My Melanoma Story

(This story is being posted Nov. 2023 in parallel in a private Facebook group for melanoma patients.)

I recently rejoined Facebook in part so I could find a support group for melanoma. My melanoma journey so far has been one of the most daunting and totally unexpected chapters of my 69 year old life. I have not shared this story yet in the FB group for stage 4 melanoma patients for 3 reasons: (1) I've been extremely busy having and managing treatments and all things related or connected, (2) SO many of you in the group have been enduring much worse problems than me, so I have felt a bit of what some might call "survivor's guilt", and (3) it's such a lengthy story that I fear I will have difficulty having the right balance between valuable detail vs conciseness. I do feel I should share pretty much the whole thing even though most of you all don't do that here, as I can never know which items might be in some way helpful to someone. I know the guilt is fake and the other things can be overcome, so though I've been dreading this moment, I'm going to press forward NOW (Oct 26, 2023) to get this done and out there. At the very least, the trick I found to eliminate my immunotherapy side effects should be helpful to many!

CANCER BACKGROUND

This story and the extreme torture I endured in the early weeks did not begin with any awareness of the word "melanoma". I only knew it was a variety of skin cancer, but cancer itself did not seem to be a part of the torture. I HAVE had several carcinomas in the recent past. A squamous cell on one leg in 2019 and 5 basals in 2021-22. Once I got on Medicare in summer 2021, a dermatologist shocked me by reporting that 3 on my lower back were basal cells, yet they'd been there for 15 years and only itched sometimes. (At 69, I've played sand volleyball since my 40s, intentionally getting sunshine all along in what I thought was a balanced way.) He did cut off (Feb. 2022) a small slow-growing tumor on my chest that was more recent, and directed me to Mohs surgery for a faster-growing problem on my lip. I had beat the 2019 squamous via very good natural means which had saved my life from something not cancer-related 15 years earlier. (I also had been very opposed to chemo and radiation for decades.) Back then (2019) I had no money and no insurance, so with trepidation I started a Gofundme through which friends and others kindly helped me to finance the initial phases of the natural custom protocol. It covered most of the low 4-digit expenses and took about 3 months til the tumor marvelously fell off. Back to 2022. Even after I "let" the dermatologist into the picture via my new Medicare plan, I was still hesitant to go as far and fast as he wanted. But the lip tumor was getting out of hand, so in Feb. 2022, I submitted to the Mohs surgery. It worked, but it still has discomfort every day and it will take years for it to feel comfortable and normal again. (I should have checked it sooner.) They needed 2 cutting sessions, which is about average. (You can research Mohs surgery if interested.) So having seen some squamous and basal cell carcinomas, I arrogantly thought I had "seen it all".

JAUNDICE

Faces: Yellow vs pink.
(It's not a lighting factor;
I'm actually quite yellow!)

The real journey of torture began about Nov. 15, 2022 about 2 years after retirement. I woke up and was suddenly afflicted with severe ITCHING which rapidly migrated to each limb and extremity. It required my stiff brush scrubbing rapidly and deeply to resolve the itch. I'd be intense at one spot and it would usually spread to an adjacent part. When done with that part or parts, another area would start itching, grabbing my attention. I'm glad that it didn't attack all of me simultaneously. The itching spells would be maybe 20 minutes roughly 3 times throughout the morning, sometimes into the afternoon. (This by itself was not "torture".) On Nov. 17, I did visit my Medicare PCP. She said I had JAUNDICE. I'd heard of it but knew nothing really. Said my skin was yellowish as well as the whites of my eyes. I couldn't easily sense the color tone myself, but at Thanksgiving dinner (Nov 24) with extended family, THEY could see it easily. In this picture, you can easily see the color contrast. (The picture has NOT been doctored.) BTW, I'm not a photogenic guy, and during this sick time I was even more unphotogenic. I wouldn't have shared it except for the possible value in seeing the degree of jaundice.

Jaundice is not a condition; it's a set of symptoms reflective of some causing condition. The liver is failing to conjugate bilirubin, which is one of the components produced by the spleen as it breaks down the red blood cells that are ready to die. Instead of the liver excreting it into the waste (making your urine yellow), the liver is wrongly dumping it into the blood and the blood dumps into the skin!! Not only was I itching but the dermis was being internally traumatized by the bilirubin. After a few days of this, my torso (and more) became so raw simply from the bilirubin, that I couldn't tolerate lying down! This means that for the most part I couldn't SLEEP! Once the dermis was heavily toxified, I think I was getting part of ONE hour of sleep once or twice each night! I'd try a few minutes for rest but would have to get up to relieve the pain. I could stand, walk, and I could sit at my desk, but between hurting a lot of the time and not much sleep for weeks, it was a living TORTURE that I would not wish on my worst enemy! An invisible torture no one could see if they looked at me (other than the mild yellow tones). I could drive, work at my desk, watch TV, but all with a gnawing sleep-deprivation. And of course, there were the itching spells generally in the morning and afternoon. (I know the liver's functions are on daily "cycles", so this made a bit of sense.) I asked the doc for something to knock me out. But she couldn't give me anything that would do more than make me groggy the whole 23 hours I'd be awake each day! So I dropped THAT drug as fast as possible!

PESKY SKIN TUMOR

There was actually another slower crisis going on at the same time. I remember thinking "I wish I could have finished one crisis before beginning another." Sometime in the Spring, a tiny bump had started growing on my right shoulder 1-2 inches to the right of my spine and almost 2 inches down from the top. The dermatologist had left my insurance plan and I wasn't eager to find another. (Though he was very competent, I was actually kind of glad he was gone as I felt he was a bit too pushy for me.) I knew some of my own non-invasive tricks from the 2019 days that might help, so I did NOT seek a new dermatologist. It wasn't painful at that time, but by the time it got to be a cone 1/2" high and 1/2" across, I was trying a natural "oxygenation" technique that has helped some people's tumors. It did seem to reduce it down to 1/8 in. high, but didn't shrink the diameter. I think it was August when in a scheduled checkup with my PCP, she said "what about this tumor on your shoulder?" I said I'm making slow progress with self treatment and I'd like to continue that for awhile. She said "I don't think you should wait. See a dermatologist." I replied okay but wish to wait till Oct. 1 when I would be on a new plan. I wanted to keep the same derma after the switch. She explicitly said I shouldn't wait even if an insurance change might force another derma change Oct 1. I wish I had listened to her. I ended up not changing plans till 1-1-2023. I think it was early Nov. I started looking for other derms on my old plan. But most were booked up till APRIL (2023)! This is because the large derma practice that left the plan had a LOT of patients who since May 2022 had clogged all of the local competition. I did find a derma new to the network and I got a exam and biopsy date of 12-21-2022. I had to get this new tumor and the older ones biopsied, even though the new derma was rather far away. Here's the shoulder tumor several days before the jaundice started: https://www.facebook.com/photo?fbid=246788548384789&set=a.246791621717815 A closer look: https://www.facebook.com/photo?fbid=246788551718122&set=a.246791621717815

When my PCP diagnosed the jaundice on Nov. 17, the shoulder had been bothering me enough that I asked her, "Can you prescribe something for the pain?" She examined it and believed it was now infected. She gave a topical antibiotic ointment; after a few days it worked and reduced the resting pain. (It was just low enough to receive some pressure from the bedsheets.) But for the jaundice, "I'm ordering blood work now." Sometimes the medical world moves speedily as molasses. A WEEK later the bloodwork was back. Some problems were ruled out; an ultrasound was ordered. Another long week of waiting for the ultrasound report while torture continued daily. Good news from the new derma. I had asked to be put on waiting list of cancellations. Sometime before Mon Dec 12, I got the call; I could be biopsied on Tuesday Dec 13! On Dec 12, the ultrasound results came to my PCP. My PCP begged me to go into hospital immediately! Liver was enlarged and at home I could go into a liver coma at any moment and DIE! (Liver coma requires an immediate ICU.) I said, "NO! I've been tortured for WEEKS now and haven't died. I MUST have these overdue biopsies tomorrow morning! THEN, I'll gladly submit to the hospital tomorrow afternoon." I got the biopsies done okay Tues. morning, but due to bed shortage, the large hospital couldn't take me until FRIDAY evening, Dec. 16! (I'm including precise dates because the timing of all this is sometimes significant.) URGENT HOSPITAL Once I got in there, things started happening quickly. CT scan showed that a MASS had grabbed and was crushing my common bile duct! THAT was what was causing all liver fluids to BACK UP into my liver, including the bilirubin! The bile duct is normally 3mm across. Above the mass, it was bulging to 20mm!!! Bilirubin level is normally 0.0-1.5 mg/dL. The PCP's Nov. draw showed 9.8! (And the lab repeated the analysis to be sure.) No WONDER my skin was being fried! And by Sat. Dec. 17, it was 28.3! Here's a good diagram of the whole biliary tree: https://www.facebook.com/photo?fbid=247276768335967&set=a.246791621717815 You can see the branches of the common bile duct weaving up into the liver. The liver produces bile and other things and funnels it all together through these branches to go out through the common bile duct into either the gallbladder or the intestine. The mass had formed right on the common bile duct, squeezing it shut. I didn't make it home till Jan. 6, and as of Oct. 2023, I can't remember "bilirubin" pain associated with laying down in the hospital, but there must have been. For sure, there was much nighttime sleeplessness and boredom there in the hospital. At least at home prior to the hospital, I had been able to fight boredom by doing stuff at my desk and computers 23 hours a day even though I felt like a groggy zombie. I was keeping a blog to a few friends. On Dec. 25 (9th day in hospital) I noted in my blog, "No solid night's sleep here so far; always something to distract, blood draw, vitals, etc. even at night. I think it was the 3rd night here that I had at least SOME meaningful sleep." PAINFUL MRI They needed a sharper view than the CT, therefore an MRI of the abdomen was scheduled for ASAP on Dec 18. OH, it was horrible! I'm not claustrophobic and I had had an MRI in 2020 for something else. But I knew I had to hold perfectly still for a long long time! Yet the itching spells WOULD and did come! It was agony, but by the grace of God, I managed to hold still enough that they got a good set of images. The agony of not doing ANY of my massive scratching was so bad that after they loosed my "graveclothes", I gave a short warning then SCREAMED for what seemed like 3 minutes! (If you were to speak to me by phone, I could repeat briefly the hyperventilating screams I gave, as well as the "it's not your fault" I gave to the technicians even in the middle of my screaming!) This 30 sec clip of Homer Simpson screaming non-stop is something like it. https://www.youtube.com/watch?v=41uWqck2YkI Thankfully I recovered from that trauma before they wheeled me back to my room. Eventually I had a doctor visit. Numerous doctors individually came in over the course of my stay, but sometimes there were 2 or 3 at a time, and a few times the whole team of about 5 came in. Whoever came this time told me that surgery will be an option, but before that, they need to do an endoscopic procedure to install a STENT in the bile duct to prop it open so that the liver can start draining again. RELIEF On Dec. 20, they did 2 procedures under 1 anesthetization, upper EUS (upper endoscopic ultrasonography) and ERCP (endoscopic retrograde cholangiopancreatography), the latter of which is a procedure to diagnose and treat problems in the liver, gallbladder, bile ducts and pancreas. I had never heard of these, but it turns out that problems at the bile duct are WAY more common than most of us realize. I was knocked out and (they told me) they flipped me over on my stomach for it. In the 1st procedure the endoscopist took biopsies of the mass and of an enlarged lymph node in the liver region. I think she cut a very tiny hole in the stomach wall (from the inside) so as to approach the tumor from outside the bile duct. In the 2nd procedure, she used a duodenoscope to go down past the stomach into the duodenum and up INTO the bile duct and all the way to the liver. She had to push harder to squeeze past the mass that was crushing the duct. Both by sight (camera) and whatever other tools they have, she was able to confirm the MRI's assessment that the mass was 1.9 x 1.7 x 1.5 cm. That's less than an inch long. It may be small, but enough to cause all my great agonies. She installed a 3.5 inch STENT right at the mass, thereby allowing my bulging liver to start draining. Within 2 days, my bilirubin levels were rapidly falling. I tracked the bilirubin with every daily blood draw and noticed my itching and skin pain were gradually decreasing. Ah, what a relief! By Jan. 1, it was down to 5, which while way above normal was low enough for me to sleep and the toxin-traumatized skin to start to heal. What a journey of torture this has been, which I'll NEVER forget! As I was journaling this on Dec 26, I broke down into tears of joyful relief. I didn't think it was even possible to lose that much sleep and still survive. WHAT THEY FOUND But what was this mass?? Was it cancerous? Was the lymph node malignant? Preliminary cytology on the mass (done while I was still under) was "suspicious for adenocarcinoma" and the lymph node was benign-suspicious but lymph nodes often have false negatives. One thing was clear; the jaundice was never about the liver's failure to conjugate bilirubin; it was strictly this monster crushing my bile duct to death! We ended up waiting 3 long days for the lab. In the meantime, the team of doctors were franticly (my impression) making plans for possible scenarios. While that was going on, a new surprise player jumped out onto the stage. Thurs. Dec. 22, I made voice and email contact with the new dermatologist's office. THEIR biopsies were back! 3 out of the 5 were basal cells (as expected) and one was a simple wart. But the shoulder tumor turned out to be MELANOMA! I still didn't know that melanoma could be a lot worse than other skin cancers. The derma said that they couldn't excise it themselves but would refer out to a specialist when I was ready. But even then, this was news I had to get to my doctor team, which is surprisingly hard to do even though we're in the same building (the hospital). Was this shoulder tumor in any way connected to the bile duct mass? I begged the doctors to have a surgeon cut off the shoulder tumor WHILE we were waiting for the internal biopsies. It was hurting a lot and interfering with sleep. I figured I could get a head start on that while in the hospital. They considered that and even found a surgeon covered by my insurance and I met him. But he said it would be a lengthy recovery and require skin grafting from a limb. We were still thinking about that when the endoscopy biopsies came back. The lymph node was fully benign. But the mass was MELANOMA! They were able to conclude that both of these tumors are really all ONE problem; it started on the shoulder and then spread to the bile duct. Therefore, this is considered stage 4. Wow, I didn't know you could jump up to 4 without going through 2 and 3. And of course I was totally startled that it wasn't 2 separate crises. This news together with the weeks of torture from the jaundice was enough to make me learn my lesson. Do NOT let a small (but growing) unknown lesion go unchecked. SEE A DERMATOLOGIST! Now that I was on Medicare, I had no more excuses. I think it was the whole team of 5 docs that broke the news to me about this double melanoma news. They had seriously been looking at surgery, which I had hoped for. However, it wasn't until March 2023 that I was educated as to how repulsively severe the surgery would be. (I'll tell you that later.) And I insisted that whatever they did, I strongly wanted to keep my fully functional gallbladder, which they said would have to be cut out. But in my case they wanted to postpone surgery because the tumor at the bile duct was not bile duct cancer, but was melanoma that had SPREAD TO the bile duct. This very experienced team had NEVER seen melanoma at the bile duct before! But they did research and found that it HAS happened before elsewhere, albeit rarely. The so-called good news was that IMMUNOTHERAPY has a high success rate at reducing or even eliminating melanoma. So they wanted me to try that before resorting to the radical surgery. The liver surgeon also said the tumor at it's current "large" size was "inoperable" and he wanted to at least shrink it some. (I didn't then understand why 2 cm was considered "large".) I found out later that bile duct cancer responds poorly to immunotherapy in comparison to melanoma which responds well. (Heck, I'd never even heard of bile duct cancer.) ABO REACTION, HOME FROM HOSPITAL After I moved home, I eventually spent hours learning how to read the MRI images. (It's not easy, even for oncologists; they usually simply read the radiologist's report.) Here's the best image for observing the mass. The radiologist even drew an arrow to point it out. https://www.facebook.com/photo?fbid=247032268360417&set=a.246791621717815 Let me orient you a bit. MRI images are a "slice" through the body; this view is a "coronal" view, that is, from the front. Liver is dark but liquids are bright white. You can see some of the branches of the tree inside the liver, all white. Those branches converge at the lower right into the bile duct (bright white with fluid) and it is BULGING (20mm)! It's supposed to be 3mm. The very dark blotch to the lower right of it is the mass. IT is why all the fluids were backing up into the liver causing me so much torture! Incidentally, you can see my slightly bulging grey gallbladder in good shape there. Excision of the shoulder tumor was taken off the table, at least while in the hospital. They would have sent me home except that one of the docs, their infection specialist, said I had an infection, probably staph and they wanted to stop that before I left. Had days of IV antibiotics, which did partially work, but gradually caused an agonizing skin reaction. (Here's my hand on Dec. 30:) https://www.facebook.com/photo?fbid=246788678384776&set=a.246791621717815 My brother and I jointly elected to abort the last infusion ("discharge against medical advice") because of my horrible skin reaction and because my white blood cell count was already dropping rapidly. I was very glad to get back home Fri. Jan. 6 to my own tiny apartment, start eating more decent food AND resume taking food supplements that had earlier been tailor-dosed for me. The hospital docs forbade taking supplements while in the hospital, which is probably partly why my immunity had gone down to a scary 38%. At home, bilirubin was now down below 5.1 and still falling rapidly. I had less itching and my whole dermis was less raw so that I COULD lie down and sleep better. But by now, the shoulder tumor had been growing and causing more frequent "knife pains" during the night, as well as the day. DEATH SENTENCE AND WEIGHT LOSS Mon. Jan. 9, we rapidly proceeded to go forward as fast as possible with outpatient visits and difficult decision-making. My brother who lives 30 miles away was a great Godsend to me for whom I can't be thankful enough, transporting me often, encouraging and advising along the way for months. He had lost his 1st wife to fast-acting ovarian cancer in 2002, and I learned things about his efforts to care for her that made me cry to realize how grateful to him she must have been. He was amazing. And now he was getting to partially care for me albeit not in the same home. We went immediately that day (Jan. 9) to my PCP who had learned what she could from the hospital. By then I had lost weight going from 183 down to 153. More importantly, I had gotten so weakened in the hospital it was helpful to hold onto someone's arm to walk any length. The few times I had earlier heeded my brother's advice and walked down the hospital hallway alone, I definitely felt like holding the railing much of the time. (Just so you know context, in early Nov. I was still in my passionate 20+ year habit of sand volleyball at least once a week. Early in the hospital when the doc asked my age and I said 69, I added "I'm not a 69 year old male; I'm a 69 year old volleyball player!" He smiled saying, "I like your attitude!") By mid-May 2023, I would lose more weight going down to 142 lbs. I was very emaciated and skin everywhere was wrinkled and scary looking! Decades ago I was comfortable and steady at 143 and 6'3"; I've always been skinny and never athletic till age 41 when I embraced volleyball. But at age 67 I had reached 185 for the first time and was very happy to finally have a more normal weight. (That weight gain happened in less than a year for reasons still not fully clear.) But NOW (come mid-May) the 142 lbs was inside a dermis that had been stretched to 185, therefore I was a very ugly "bag" of skin and bones. Much of the loss was muscle, therefore the overall weakness. But back to Jan. 9 and the PCP. She calmly told us that if I didn't embrace immunotherapy, I would have less than a year to live and they would do everything they could to make my last year of life as comfortable as possible. (She told me months later that she had had melanoma patients who died even WITH immunotherapy!) I was taken aback and politely retorted "No way - I'm going to fight this and not give up." In my blog I wrote: "If you are one who prays, these weeks ahead are when I need God to hear your prayers. I'll now be very consumed for days/weeks with dealing with all of this. But I will affirm I do NOT want this to be terminal. I'm asking any praying people to ask God to guide me to overcoming this!" I later added: "I do not accept this death sentence. Between the prayers of some of you and others, and some excellent cancer fighting NATURAL tools I have access to, I am determined (by God's grace) to eliminated these melanomas throughout my body! The one on the shoulder causes the most frequent discomfort, but ALL must go! THANK YOU for whatever way(s) you may be able to be supportive of me in this goal! I want to gain my weight back, gain my strength back, and resume playing volleyball for years to come! I can't guarantee anything. God is my refuge. But I am going to do MY parts to "FIGHT LIKE HEAVEN" to overcome! It's already a lot of hard work, but pray I will persevere!" ENERGY MEDICINE AND DIET I knew of the power of the natural modality I was connected to that had strengthened many patients' immune systems to successfully fight off various cancers, and I was scheduled for a full energy medicine exam that same day (Jan. 9). But I would try to stay open to immunotherapy as the oncologist had told me in the hospital that immuno has much better results than chemo these days. A big problem with the "natural resources" of energy medicine is that it's all out of pocket and I am very below the poverty line. But I WAS able to buy everything I needed. The 55-point testing showed I needed heavy support of kidneys, liver (of course), thymus, small intestine, colon (probiotics after the antibiotics had killed much of my microbiome), spleen and a few other things. A lot of people walk out of such an awesome exam with many times more supplements than I, but I had been following this modality for 15 years and therefore many of my systems had been in very good health for a long time. (The volleyball greatly helps, too.) Months later, parathyroid would be a regular item needing support. I was reminded that I must immediately start refraining from sugars, as we've known already that while sugar doesn't cause cancer, if the cancer is there, it FEEDS it. (If you have any doubts about this, study how PET scans work. They are based on this concept.) So I started reading labels and banning many foods from the pantry, not that I was a heavy sugar user, but SO many processed foods needlessly add sugar, HFCS, etc. Some of the needed supplements were powders (vs capsules) that I could add to a smoothie, and a good protein powder was encouraged. Included (in the smoothie) were berries, alternating between 1 cup of strawberries and blueberries. Also 1 banana. While berries have some sugar, they are also CANCER FIGHTERS as well as being lower glycemic than many other fruits. We eventually found a good non-toxic low glycemic sweetener. (So many out there are toxic.) My brother lent me a spare blender till I could get one of my own. (I hadn't had one in decades.) FIRST ONCOLOGY VISIT Jan. 13 we visited my new oncologist I had met in the hospital. We had lots of questions about the MRI, the tumor and what the options were. The personnel were very nice, and after the doc visit, the nurse sat us down, giving me printouts from www.chemocare.com. The 2 printouts were all the details about Ipilimumab and Nivolumab. I cringed with nervousness about all this as for years I had considered chemo, radiation, etc. to be more deadly than the cancers. But now I was under a terminal threat MYSELF. I would study the details at home, but wouldn't make a decision just yet. The oncologist agreed that we must get the shoulder tumor cut out ASAP by a dermatologist, as the pain from it was frequent and often agonizing. Here is the shoulder tumor Jan. 8: https://www.facebook.com/photo?fbid=246788785051432&set=a.246791621717815 Here it is Jan. 13: https://www.facebook.com/photo?fbid=246788795051431&set=a.246791621717815 DERMATOLOGIST SHOCK Jan. 17, I finally got to see my old dermatologist! (And "old" also means he's kind of old himself, probably in his 60s. Very experienced and had also taught at Cornell.) Remember that on Jan. 1, I had switched to a different Medicare Advantage plan. The dermatologist was still under this one! Though (as I said earlier) I "sort of" didn't like him, he was only 3 miles away and VERY experienced! Over the next several months I grew to like, even love him. He examined the tumor. I think by this time it may have been 1 inch across. I showed him the biopsy report. But he stared and stared at the tumor! "That doesn't look like a melanoma!" He happened to have 3 young doctors in their residencies working with him. He called all 3 of them in. "Guys, does this look to you like a melanoma or a basal cell carcinoma??" All 4 of them said "basal cell"! But they agreed to trust the earlier biopsy, and schedule one of them to tackle this advanced tumor for Jan. 24. From the 17th onward, it was a challenge to get the derma and the onco to confer, but they DID confer at least once and agreed this external tumor needs to go now, to get me past the frequent "ice pick" pains that were increasing in frequency and intensity. A few days before Jan. 24, the pain was increasing enough, such that I started the pain meds early (acetaminophen and ibuprofen, "extra strength"). For the first time, I learned extensively about OTC pain med management. (I was blessed with family and friends with much more experience than I in this.) I was on 2 doses per day of each. (Max doses per day is 3 for each, and you stagger the 2 drugs.) I had never had this much painkiller and was very hesitant, but really needed it. AND it did allow me a few hours of good sleep. Starting the afternoon after the surgery, I went to the maximum of 3 doses per day for both, and kept careful logs of what I took. Though the tumor was gone, the surgery itself was now the source of great pain. SKIN SURGERIES The morning of the surgery, after days of little bathing due to bandages, I removed them and carefully showered the sites on the back. Though I had not sweat much for a long time (this was winter and I was easily chilled due to emaciation), it was good to feel clean all over, even though the tumor hurt a lot. I tried to measure it and I estimated it to now have reached 1 1/4 inches across. The surgery event itself was very traumatic. Their exam "chairs" double as a bench to lie down on, but this was not very good for being on my stomach and able to breathe easily. Neck was a bit sore, but you'll shortly see why I soon forgot all that! The tumor was round, but he shouldn't merely cut the disc out; he needed to carve away some margin plus a much larger "football" shaped region so the skin either side of the tumor can be sewed back together and hold. (He didn't want to do any grafting.) He drew it out on my skin with a purple ink pen as well as other markings. Here's his drawing: https://www.facebook.com/photo?fbid=246788788384765&set=a.246791621717815 Notice that the football is drawn vertically. However, he made a last minute decision to do it horizontally instead. His reason was that whichever way he did it, I'd have to be very careful in the weeks ahead not to stretch or reach in certain directions to avoid pulling the huge wound back open. He realized it would be much easier for me to restrict up and down motions rather than left and right. But before the surgery was the lidocaine! I wasn't prepared for this. I'd had several lidocaines before. While it's not pleasant, it's certainly not a screaming event. This one was! The lidocaine had to have epinephrine added because the area was so LARGE! The screaming wasn't fully continuous like the "Homer" scream, but cyclicle. The PA who did it would warn me before each injection. The needle would go in and in a second the fire would hit, AND screaming at the top of my lungs! He'd apologize and I'd yell "it's not your fault" while still screaming. Then it'd be over for a few long seconds while he reloaded the "gun" (the hypo). Then another slow screaming session during the slow injection. This continued repeatedly for what my brother said was 30 minutes! I asked "why can't I be anesthetized?" He said insurance wouldn't cover it. Once it was finally over, I was able to relax and begin feeling no pain. The young resident and I, as well as my brother who was watching, were able to converse throughout the whole actual surgery. (This young doc was a super nice guy, open to alternative ideas, and very knowledgeable; I'm sad he has "graduated".) He didn't redraw the football horizontally as he could infer it from the vertical drawing. Also, he determined he wouldn't have to cut the football "ends" after all. He simply sliced each of them horizontally, then overlapped the upper and lower areas and sutured it. So all 3 segments look like one long zipper. Here's the site during the 1st bandage change, Jan. 27 (3 days later). Includes Vaseline which they always coat the area with. https://www.facebook.com/photo?fbid=246788885051422&set=a.246791621717815 If you wish, here is the excised tumor (plus margin) sitting on the table, day of surgery: https://www.facebook.com/photo/?fbid=247740101622967&set=a.246791621717815 And if you can stomach it, here's the cavity from which it came: https://www.facebook.com/photo/?fbid=247740104956300&set=a.246791621717815 Remember, that thanks to the lidocaine, I felt no pain during his cutting. But at one point, I felt liquid drops hitting my right jaw. Some veins were cut and one squirted a bit up to my jaw. The dark spots are where he cauterized those veins. No meaningful blood loss. Shoulder sutures 1 week after surgery. Supervising doctor says it looks fantastic. I believe part of the reason was I was taking a high quantity of nucleotide supplements which are used for rebuilding injured tissues. https://www.facebook.com/photo?fbid=246788888384755&set=a.246791621717815 The tumor and it's margin were sent off to THIS dermatologist's lab, and so another wait began. For the next two weeks, the pain was very great, and I was on the full dosage of 6 per day for both painkillers. We WERE eventually able to make arrangements for me to be transported to the dermatologist for those bandage changes every 2-3 days, without my brother trekking into town and without ME trying to drive. Due to my very weakened state, I wasn't even planning to drive for awhile. Eventually the biopsy came back. It DID confirm what the Dec. 13 derma's biopsy had found--melanoma. However, by sending the whole tumor in including some margin, they were able to report that the margins were CLEAR! (They "got it all".) Yay! By Mar. 6, the shoulder site was healed enough that we could tackle the 3 small basal cell carcinomas that had been on my back for over a decade. Another several weeks of frequent trips for bandage changing. These all healed up well and may not even have scars eventually. The doc did a great job. No ephinephrine needed, so the lidocaine screaming was only a few wincings in advance. When all the bandages finally came off weeks later, it was a great relief to be free of sponge bathing and always take a REAL shower. ANALYSE IMMUNOTHERAPY During the immediate days after the surgery, we worked on the oncologist's request to get a PET scan scheduled, in order to see where else the melanoma had spread besides the bile duct. I also dived into those ipi/nivo handouts. The data currently at ChemoCare.com has been drastically reduced since they made printouts, but here are the links to those two drugs: https://chemocare.com/druginfo/ipilimumab https://chemocare.com/druginfo/Nivolumab As I studied the printouts, I cringed in increasing horror at the possible side effects. I'm a single guy living alone in a small seniors apartment with the nearest family 30 miles away. Some of those things were positively terrifying. With some of them, I might not even be able to get to my phone to call for help! Perhaps the most scary thing to me was the possibility that serious effects could occur MONTHS after the last dosage! All of it together made my refrain to be "I do NOT want to do this!" The longer I was on my custom-tested natural regimen (and safe foods), the better I was feeling. We all agreed to see how the Feb. 8 PET scan would go. Remember that the MRI had been on Dec. 18. seven weeks earlier and the PET was over a month after starting my custom nutritional protocol for re-strengthening of all weakened organs, which included the thymus, a key immunity organ. PET AND RELUCTANCE When the PET scan came back, it showed the tumor was about the same size (it had not grown) and there were NO other tumors (high hypermetabolisms) in the body (it had not spread)! There were some minor issues, but no new metasteses! I was on cloud nine! I felt very encouraged about the energy medicine's targeted nutrition I'd been doing. Because of this and because of my terror over experiencing and managing ALONE the likely side effects of ipi and nivo, I was strongly leaning against immunotherapy. Plus I learned that I'd need this thing called a "port" installed; another whole surgery with it's own risks! (I had a midline in the hospital for awhile; I couldn't imagine having a fragile tool hanging out of my flesh for many months! But I didn't have all the info about that yet.) I met twice more with the oncologist in Feb. We got him to clarify the plan for the whole project. In the hospital, the liver surgeon on the team had said "This is inoperable as it is now". They wanted me to do 4 rounds of those 2 drugs, a double infusion every 3 weeks, totaling 3 months. Then the tumor will hopefully not spread and will shrink so that it's "operable". He said that the drugs allegedly "won't involve great discomfort and disruption of my current life". After my study of the information, I was not convinced. Having come to this super-reluctance, I told him of this. He became humble and sympathetic. "I don't blame you for your hesitancy at all; these are very difficult things. But sadly this is the best we have; the state of the art in medicine." I expressed great confidence in the power of God's herbs to heal our bodies, and that I'm on a very intense and targeted program. He admitted he knows nothing about using nutrients. Seeing as we were not enthusiastic about the port and any immuno drugs, he made an appointment for me to see the surgeon who had said "inoperable" to explain to me in greater detail all of the options. While I didn't want immunotherapy OR surgery, I figured it couldn't hurt to listen. It turns out that the surgeon couldn't be seen until shortly after my 3-month stent replacement, which had immediately been scheduled for Mar. 21 right after the Dec. 20 initial placement in the hospital. Most biliary stents have to be replaced every 3 months. TUMOR GREW The Mar. 21 stent replacement went very well, but was EXTREMELY disappointing! The endoscopist was able to estimate that the mass had grown longer by over 30 percent! Though I had been feeling relatively good, my weight was continuing to slowly drop; was at about 153. By late April, it would go down to 142. WHY had the tumor grown? Was it all AFTER the Feb. 8 PET showed no growth?? All my organs were getting stronger again, yet the tumor had grown. During the next 2 days while waiting to see the surgeon, I reflected on all I was doing to strengthen every organ. I remembered that while I can now intelligently give each organ what it needs to get well, it takes TIME for the healing and rebuilding. And apparently, my improving immune system components were not improving as fast as the tumor was able to grow. Therefore with big disappointment, I realized I'd probably have to fearfully jump into the lake of immunotherapy and side effects. Mar. 23, we met with the surgeon, and several things came out of it. First, he was shocked that I hadn't started therapy yet. He couldn't have known that we were fiercely dealing with the primary tumor, which was totally consuming. But I also hadn't started because of the potential horrors of immunotherapy side effects. But I admitted I was reconsidering because of the 30% growth just discovered. He pointed out that a mistake we made was trusting the PET scan for size information. He said that PET scans, especially for bile ducts, are the worst for blurriness, CT scans are a bit better, then MRIs, then endoscopies are the best where the scopist can actually see with a camera and physically make measurements right at the site. SO, the tumor MAY have been larger by the Feb. 8 PET scan, even though it had not spread anywhere else. There had been a point where we (me and my family) thought the tumor may be 3 inches long. But from the MRI it was seen to be less than 1. So if it's under an inch long, why would he say it's "inoperable"? He explained that it WAS operable but unwise as immuno could totally melt the thing making surgery unnecessary. But if immuno only shrunk it, then surgery could have greater ability to be sure all cancer was removed. In some cases, cancer in the bile duct has spread so far south that part of the pancreas had to be removed during the surgery. The surgeon gave me the name of the surgery to look up. It is "roux-en-y hepaticojejunostomy". Your internet search will find it; it is a RADICAL surgery, albeit life-saving for those that really need it. The surgeon had wanted me to have the best chance for getting all of the cancerous tumor out. BEGIN IMMUNOTHERAPY So we immediately got the oncologist to arrange for IV port installation, which occurred Mar. 31. Though new to me, the installation went well, and I reported for the 1st infusion Apr 4. During this time since the surgeon consultation, the onco office preventively prescribed anti-nausea and anti-diarrhea meds. Apparently those effects are common and worth preparing for in advance. The infusion process was very interesting. The worse part was the 1-second puncture of the needle into my chest. Though very short, it was very severe. I was told I could use lidocaine cream to ease the pain. The nurse said some do it and some don't bother as it's so brief. When my PCP reported the best co-pay price she could get for me, I said "not gonna waste my money for 1 mere second". But I found myself living out that 1 second many times in advance! So I gave in and sprang for the tube for initial use with my 2nd infusion in 3 weeks. After the 1st one, I asked the nurse how SHE felt the side effects would be. I was surprised. She calmly said that I might not have any or if I did, they'd probably be mild. Well, THAT was certainly comforting, but it didn't erase the horrors that chemocare.com had written up on their pages. While encouraged by the nurse, I braced myself for anything. I WAS definitely keeping up my energy medicine nutritional support. One delightful part of the infusion appointments at 10am was that we were provided a free delivered lunch from the cafeteria! The menu had choices and I WAS able to avoid high sugar items. It was very nice to be able to eat a nice lunch while the IV was dripping. MY SIDE EFFECTS By the 2nd day after the 1st infusion, I started having two bad effects; constipation and chronic fatigue. (I had neither diarrhea nor nausea.) I worked with my onco's nurse to address the constipation with mixed and changing results. I had a prescription but also tried milk of magnesia. Over the next couple of weeks, the bowels were barely tolerable but not ideal. I never felt fully "empty" like you should feel after a proper evacuation. And the fatigue was weird. The feeling itself was not odd. But after you rest awhile, you're supposed to feel reenergized. But I was often just as wiped out as when I laid down! I said, "This must be what those with CFS go through." It was hard to get things done around my apartment. The onco nurse sadly reported that they have nothing to help the fatigue. I did have some severe insomnia spells early on but I'm not sure if that's connected with the immuno. So for 3 weeks, I endured these side effects. I was grateful I didn't yet have any of the more severe ones. But even just these two were troublesome. Then because of a startling discovery, the side effects STOPPED! No drugs, no MoM and no more discernable side effects! And the thing we did (with no involvement of my onco guy) was so simple, so cheap and so effective that I'm scared to tell for fear I won't be believed. I will tell, but I have to report what led up to it. But I can testify that other than a few spells of NON-chronic fatigue, I've felt no side effects from end of April through October! My energy medicine lady and I had suspected that once each infusion would happen, my body's needs could radically change. So instead of re-checks every month, we'd do it after every 3-week infusion. We did it on Apr 7 and we were VERY surprised that hardly anything changed! So in the following months we went back to monthly, disregarding the infusion schedule. But there WAS one change we made BEFORE the 1st infusion, based not on testing but on principle. There's an amazing product in their tool kit that I've used many times over the decade since it was released. It's something that everyone would benefit from most all the time. My testing this year had showed that it was one of the possible items to support one of my organs. However, we intended to STOP it before the infusions. It's called Medi-Clay-FX and you can see it on Amazon: https://www.amazon.com/Premier-Research-Medi-Clay-FX-Plant-Source-Detoxification/dp/B08SH6GJ4Y This product is simply Calcium Bentonite Clay (calcium aluminosilicate) from the purest mine-source on earth. It comes in a capsule but you don't swallow it. You open the capsule and dump the powder into water and drink it. If you drink WITH your meal, it pulls many toxins out of your food! If you drink between meals, it slowly pulls some toxins from tissues. It pulls by safely binding to 98% of the kinds toxins that can pollute our food and bodies. Apart from a very tiny amount of good calcium that it donates, it is totally inert nutritionally. After a year of occasional use in OTC fashion, I was able to call a radio show hosted by the scientist/CEO of the company that packages it. In 5 minutes he gave me a fascinating response to my multi-faceted question. I have a recording of it on a PRIVATE link which you can listen to here: https://www.tomsgoodfiles.com/boh23.php#calciumbentoniteclay-hl Again, this is not publicly available so please keep this to yourselves. But I do urge you to listen to it, and my further report will presume that you have listened. CLAY CONTROVERSY Me and all 3 of my natural practitioner friends (one of them being my local prac) had agreed I must stop Medi-Clay while I'm on immunotherapy because we believed that this great product might PULL OUT of my body the toxic immuno chemicals intended to kill the cancer, and we didn't want to chance that. We didn't know whether the ipi and nivo drugs would be in one of the categories of toxins that the Clay would absorb. None of the practitioners in this modality would tend to know that as that is not within the scope of what they normally do. The clay is generally great and recommended because of all the toxins that get into our foods these days. Hold all these thoughts, please. One of the things that's true about all cancers is that they love an acid environment and hate an alkaline one. So anything you can consume to shift your body's true pH upward is generally good. It can be difficult, especially when chemo/immunotherapy is in use. This goal does not fall within the scope of the amazing testing of this modality. I've tried lemon water. I was already trying to minimize meat, especially red meat. Neither those nor one of the supplements already in my script (which normally helps raise the pH) was enough to shift my urine pH even up to the bare minimum of 6.4. I had it above 6.4 a few rare times but never for long. So I was talking with one of those 2 non-Florida practitioner friends about this. All 3 of these folks are very experienced as well as well trained. This fellow wanted me to consider adding Medi-Chlorella-FX, which in this case would be for the parathyroid gland. My parathyroid hadn't shown up as weak, but he explained a way for a deeper test, which I would pass on to my local lady to do the testing. But he gave me a stern warning... If there are ANY heavy metals in my body (which there are--I still have some mercury fillings), I have to use Medi-Clay with it as the Chlorella pulls those metals out of the tissues (including from the teeth) and would allow them to resettle anywhere in the body, including in the BRAIN! (Yikes! Don't want THAT!) The Medi-Clay BINDS to such released heavy metals and escorts it safely out of the body via the stool. "But I can't take the Medi-Clay without a risk of it stealing the immunotherapy!" I exclaimed. We toyed with the idea of taking the two items just during the last week before a new infusion, thinking that most of the drugs might be out of my system by then anyway so there'd be little to lose. I might have a week of better pH, then 2 weeks not, so that each next infusion would operate unimpaired for its better 2 weeks. I was nervous about this as the tumor was still growing and I greatly didn't want to hinder the immuno. Yet a high pH has been shown to shrink tumors. Again, we were only toying with the idea. I realized I had more research I could do. I remembered that I had access to some information from the CSO (chief science officer) of the company who owned the mining rights to the clay. I had actually chatted with him by phone for bit in 2016. (A super nice guy.) I went back and reviewed all the material I had received in the past, which was largely meant for doctors. Much was hard to understand as I'm neither a doctor nor a chemist. But I picked up some evidence that seemed to say that this clay would NOT interfere with any IV drug administration. THIS is what I needed to nail down. I did try to call the man, but could only leave a voicemail. I decided to immediately initiate an email to him with my concerns. We wrote a bit back and forth as his comments were a little unclear to me. But we finally nailed it down and it was awesome news! Here was my question: "I am going through immunotherapy for Stage 4 Melanoma. I am desperate to learn whether or not PRL's Medi-Clay-FX will pull THOSE toxic chemicals out, thereby neutralizing their cancer-killing effect. I can't find the answer anywhere. Could YOU please tell me the answer?? QRA practitioners that I know do not know the answer. And I cannot reach anyone at PRL to answer this. PLEASE PLEASE PLEASE, let me know the answer to this. I strongly believe you DO know the answer. If you need to know the particular drugs (which I suspect you don't need to but I'll tell you anyway), they are Ipilimumab and Nivolumab." His response: "Medi-Clay does not enter the bloodstream and stays only in the gastrointestinal tract. It cannot have any effect on the efficacy of chemotherapy since it is usually given IV. The clay does not interfere even with oral pharmaceuticals if there is a 2 hour dose delay between the pharmaceutical dose and the clay. "If the chemotherapy is metabolized by the liver and enters the gastrointestinal tract via the bile duct; then the clay will bind the drug metabolites and inflammatory proteins, and will not allow these metabolites to be reabsorbed farther down the GIT resulting in the adverse effects of chemotherapy; including diarrhea." "...We have not received any reports of Medi-Clay interfering with immunotherapy. Once again the clay is only present in the gastrointestinal tract. Good luck, RC, DVM, MS Chief Science Officer" I had to read it slowly several times. The 1st paragraph answers our question; the clay does NOT interfere in any way with immuno because immuno is in the blood and the clay stays in the intestine!!! Yay! I can take all the clay I want! But the unexpected shock of the 3rd paragraph was indescribable. In case it's not clear, let me paraphrase it in my own words using much I've gained about health over the years, including my crash learning about the biliary tree during this cancer chapter of my life! They inject toxic substances into our blood, chemotherapy or immunotherapy. The drugs circulate throughout the body with the intent of them doing "their things" at the site of the tumors. Of the more than 500 vital functions that the liver does, one item is to detoxify harmful substances, to the extent that it can. As the drugs go through the liver, the liver purifies it (metabolizes it) as best it can. They call the results (obviously) metabolites. These chemicals may be less toxic than the chemo, but might still be toxic in ways different from the initial chemo. The liver would "like" to dump them directly out of the body, but the only way it can get rid of them is through it's only output mechanism, the biliary tree. (Yes, I know some things go out to the kidneys or back into the blood.) It goes from the common bile duct into the small intestine. Sadly here is where all foods AND drugs are ABSORBED. So these metabolites now get absorbed back into your blood and go everywhere causing our SIDE EFFECTS! But if we properly take the Medi-Clay, those toxic metabolites will be BOUND and REMOVED without being reabsorbed! Isn't this amazingly simple?? We've never known of a way to prevent toxins in the intestine from being absorbed till now. Even now it's not perfect. As the scientist on the radio said, it does not absorb dioxins and some other categories. But it's really great with the toxins it DOES pull out. The scientist had not been talking about chemo specifically, but ALL toxins. This is why the practitioners in this network have had no knowledge of this novel use with side effects. SIDE EFFECTS GONE In an earlier email, the CSO said "Take 2 capsules of Medi-Clay 4 times a day (every 6 hours) and drink as much water as possible." (The water you mix it in counts as part of it.) My energetic testing showed the clay was needed for one organ at 6 per day, but I simply made it 8 for the sake of the metabolites. I'd wash each meal's supplements down with the pleasant tasting clay-water, then the 4th dose close to bedtime. Sometimes, I'd forget the 4th dose, generally with no ill effect. However, there WERE a couple of times I suddenly had a somewhat difficult stool in the morning. When I checked, it turned out I had totally forgotten supper AND bedtime doses of ALL supplements! I do generally try to take all 4 doses. I've gotten pretty good at opening those capsules neatly without spilling any. As I have the smoothie for breakfast, I empty the 1st clay caps of the day into my blender. At each onco visit, he runs down his quick-list of common side effects, and I HAPPILY (almost with glee) am shaking my head NO! Sometimes he adds "how are your bowel movements". "At least once daily, usually well-formed and soft". Once daily is a good sign to him. I've told this side effect info to both my PCP and onco guy, as well as others who might be interested. They were cautiously listening but open enough to want a copy of that email, ha ha! I just had an infusion today (as I compose this) and re-shared the concept with the nurse who had earlier encouraged me that side effects might be minimal. I said I was writing out my whole story and she said she might like to read it. CONTINUING INFUSIONS The ipi and nivo have been WORKING! And I think they may have been working a bit better as my body hasn't been having to use any energy to endure side effects. I faithfully take the supplements custom-tested for my current chemistry, as well as the daily cancer smoothie which includes all the non-capsule items on my script. Of course I continue watching the diet carefully, especially with regard to most sugars. (But remember that BERRIES are anti-cancer, so that sugar source is not excluded from my diet.) I had the standard 4 infusions of both ipi and nivo every 3 weeks on Apr 4, Apr 25, May 16, and Jun 6. Then 4 weeks later, Jun 27, it's nivo only, and every 4 weeks thru Mar of 2024 when the onco doc will reevaluate. The day before each infusion, I get blood drawn and see the doc. Most things are within normal and up to a few items slightly above. My onco guy has been very pleased with my bloodwork all along. (So am I! In the hospital there were many items WAY above or below normal. Some of them are frightening to see how defective they were.) From late Apr to mid May, I fluctuated around 142 lbs, which was frighteningly low. Up to that point, I had not been able to "make myself" eat more, though gradually I was able to increase consumption. One of my out-of-state prac friends felt that the 2 protein scoops in my smoothie was not enough; that I should have some mid morning and mid afternoon. I took his advice for a couple months. "When will I no longer need that?" I asked. "When you start gaining weight." This tiny 1 inch tumor was consuming so much food that I really couldn't gain weight. I learned that tumors have to have blood to supply nutrients to it. As the tumor gets bigger, it has to build NEW blood vessels and capillaries to support it. THAT construction project is huge and is why the tumor consumes so many calories! To be honest, while I was still fluctuating around 142, I was sometimes worried that it might fall further, which could mean the tumor was winning. While I've had no fear of the afterlife for years due to my spiritual conversion in college, I really didn't want my life to end this way with so much left undone. CORNER TURNED / RISING WEIGHT By end of May, I had gained a couple of pounds, stably. The results of my 2nd PET scan on Jun 16 were: "Improvement in the previously noted hypermetabolism involving the common bile duct" and the Max SUV was down from 7.9 to 3.2!!! Oh I was SO HAPPY about that!! A few days later when the endoscopy lady replaced the bile duct stent again, she reported "moderate stenosis of the common bile duct which appeared similar in length to prior ERCP with slightly improved stenosis". That is, though the tumor is just as long, it's not gripping as tightly! This means it's shrunk! Getting weaker! By Jul 1, my weight had risen and was fluctuating around 150 and I was thrilled about this increase (especially that it was going upward, not downward). My appetite was better and it was easier to add nutritious extra snacks without feeling stuffed. In the early Spring I had started taking 20 min. walks around our apartment tower. I picked 20 min. as a way to estimate 1 mile. The parking lot circles the building so it's easy for the residents here (all seniors) to walk laps around the building. Long before melanoma, I had measured a 1-mile path into the neighborhood, but didn't dare walk it now as I might have trouble and be too far from home. At home, I could always see grass and immediately fall down on it safely if I felt a faint coming on. So I started these walks for exercise. When I reached 150 and it didn't go back down, I happily suspected this was because the weakening tumor was no longer devouring the best of my foods, so I just might be able to CONTINUE the increase eventually getting back up to my normal weight. I felt strong enough to take on the 1-mile neighborhood circuit. The 1st time, I carried an ID with me. But I felt great and have continued the 1-mile ever since. A big advantage of the doing the circuit AWAY from home was that I could take my shirt off! The apts. have a strict rule against that. But my excellent dermatologist advised that 20 minutes a day of sun IS GOOD for us. So I embraced sun-bathing walks again! Keep in mind that for a number of years, I had worked up to several unprotected HOURS a day in the sun. 20 min. is only a fraction of that, so I'm easily safe from sunburn. START GYM I said earlier that at 67 I had finally reached a "normal" weight of 185. However, I've been disappointed that part of that was belly fat. Having been skinny my whole life, I LOVED having belly fat for a change! However, when I arrived back up to 150 in July, I realized I don't want belly fat and I was starting to get it again. I want muscle, yet I hate lifting weights. But I felt I should check into available resources. It turns out the Planet Fitness next to my PCP's office DOES now take Silver Sneakers members, whereas they didn't a year before. THEN, I asked my Advantage plan if their transportation would cover rides to the gym. They said YES! So I have NO excuses left to not work out. I'm retired (so I have time), the gym is free, and the rides are free. I picked 4 machines that I felt would help my volleyball game, figured out the machine settings and weights I could tolerate. AND I wrote it all down. I started with those 4 machines on Jul 3rd, 2 visits per week. I've gradually gotten up to doing 9 machines per visit! For 8 of them, I do 3 sets of 10 reps, adding a weight slab between sets. And I do constantly ask myself if it's time to increase the starting weight. The emaciation is gone; the frighteningly hollow armpits are filled in again, and everyone says I look much better! The immuno port's thin tube that runs from the "foam half ball" up to the collarbone is nearly invisible as my chest flesh has been thickening! VOLLEYBALL TEARS By end of July, I was mulling over my "long term" dream of playing volleyball again by my Oct birthday. If I'm feeling good enough now, why not try? Since starting the sport at age 41, I've NEVER gone 9 months without it. Maybe a bigger problem is the Afib I've been struggling to manage for 3 years. Needed to get in some cardio, so tried a bit of "run walking" in my 1-mile walk. The "run" segments were VERY short and I was a bit discouraged. But I remembered I used to do jumping jacks between games JUST to get my heart revved up a bit. Revving is what happens often in VB, so I wanted my heart to be "used to revving up". I'm 6'2 and have to go to our lobby where the ceiling is high enough AND I can grab a lounge chair if I need it. (Man, so many cautions these days.) After a couple days of 3 sets of 10 jacks, I was feeling good. Sat. Aug 5 was a huge experiment for me. Weight was up to about 158. I went with the full intent that if I couldn't tolerate more than even 1 game, I'd sit out the rest of the morning. But though I was careful and cautious, I WAS able to play the whole morning!! Admittedly, it's been crowded lately to where we have 3 teams, so we all each skip every 3rd game. I definitely take advantage of those rest times now. But to play again and do reasonably well was exhilarating, both physically and emotionally. Some elements of the game I couldn't do well yet, like jumping, but it was thrilling that my body didn't forget all those skills. I was even able to resume my reputation of being the last one to leave! Though I'm the oldest there, I do wish to get at least 4 hours in every day I play. The more I play, the more exercise I get, the healthier I'll become. And I've been playing every Saturday since!! I think I remember driving away that first Saturday, almost crying with gratitude that I could even play again and also that I didn't have to wait for my birthday! (Due to FB limitations, I have to add the remaining portions as comments.) Part 2. CONSIDER RADICAL SURGERY Let me backtrack a little. After the 1st infusion of Nivo only, Jun 27, my onco asked me to visit the liver surgeon again to visit the possibility of radiation therapy, but also revisit surgery. That happened Jul 11. Remember that the June PET and ERCP both showed "it's smaller". It boggled my mind that he wanted me to consider the jejunostomy surgery (cut out my bile duct and gallbladder and replace it with my intestine). "You gotta be kidding! Why would I do that when the tumor is shrinking now??" Though the visit was about 1/2 hour, he said in essence that surgery would be better as we don't know (1) that it won't still spread elsewhere and (2) that it won't start growing again. He reaffirmed that the smaller it is, the greater possibility that surgery can "get it all" without cutting other things out. I told him "no way" especially as we haven't seen it stop shrinking yet. He did describe radiation as a path, but strongly felt now was the best time to do surgery. He would talk with my onco, then I would talk with my onco. Onco said to see a radiation oncologist. When that finally happened, the radiation guy said that in this case radiation would cause more harm than good because of where the tumor is. Therefore I should do surgery or continue immuno. I elected to continue immuno only. I almost didn't want to waste time and space with this paragraph, but it was a hoop I had to jump through so I'm just letting you know. But there WAS one laugh that both my PCP and onco guy snickered at later. That night I told this story to one of my natural prac friends out of state. He said there's often this driving factor: "When all you have is a hammer, everything looks like a nail." HA, HA, HA! (I don't mean any disrespect to this excellent liver surgeon, but I think there's truth to this!) PET NEWS I had my next PET scan on Sep 11. Though it showed several NON-cancer areas of concern, the big item was: "the previously seen mild hypermetabolism associated with the common bile duct has resolved." HAS RESOLVED! I think that means IT'S GONE! OH JOY! I had a confirming MRI on Sep 20: "no residual common bile duct mass"! But protocol dictates we continue Nivo anyway through next March then see how everything is. One of my natural prac friends pointed out that PET scans have a low-end threshold, which means there MAY be some cells there too small in number to detect. However, when I saw my body change from not able to gain weight at all to gaining it easily, I felt that HAD to mean the tumor was gone or at least dying off enough that it could not steal my nutrients any more. The weight increase continued! From Sep 18 to Oct 26, I fluctuated between 166 and 169 lbs! I saw my PCP on Sep 20 bringing the PET report with me. She shared my glee of reading "is RESOLVED"! We discussed my weight. My story was, "When I was at 185, I could not fit into ANY of my slacks or belts. If I stay no greater than 170, will that be healthy for me?" (That is, is it okay to abort my goal of getting back to 185?) She brought up a public BMI calculator and showed that 165 is a very good weight for me. Even 155 is okay, but not 142! She and I are both very happy for me. The onco visit of Nov 13 showed 174 lbs. I have been working out rather faithfully twice each week, and strenuously, so I'd build muscle not fat. However, when I reached somewhere above 160 or so, I started developing belly fat again. That's what will ruin my fit into all the slacks I've had for years. In these past few days, I've even found that I can gain weight TOO easily! In my WHOLE life I never thought I'd have that problem! In the 80s, a roommate called me "the human garbage disposal". Well, in light of how cancer gobbles your best nutrients shriveling you up, I'm now very happy to have to "watch my weight" for the first time ever! "Thank you, God, for this problem!" But I am going to step up to maybe two walks a day (or more, or maybe running) to be rid of the belly fat. And maybe one day the workouts will eventually let me bulk up to be The Terminator, ha ha! Down the road when the onco decides I've had enough Nivo and can be declared NED, then I can get this port removed. But before then, there's the issue of the current biliary stent that was placed Jun 20. At that time, we decided that instead of a 3-month plastic stent, we'd use a 6-month removable metal stent. When I saw the onco after the Sep 11 PET, I asked him how soon can I get that taken out? He said, "Whenever you want!" Great. But I kind of dropped the ball. When I realized that no one was going to call me about an earlier removal date, I called the endoscopy office. I pointed them to the PET (which they had easy access to) and they agreed there's no reason to wait til Dec 18 to go in. But the earliest they could do it is Nov 28. Though I hate endoscopies, I'm SO looking forward to it because of what's been going on with my gallbladder. Here's the diagram again: https://www.facebook.com/photo.php?fbid=247276768335967&set=pb.100091609372587.-2207520000 Part 3. GALLBLADDER PRISON The tumor was originally engulfing the common bile duct just below where the cystic duct branches off to the gallbladder. At the March stent replacement, when she saw it had grown upward by 30%, it was then engulfing that joint as well. But in either case, the stent was much longer than the tumor, so since Dec 20, 2022 the stent has been blocking the cystic duct with the result that the liver can't deliver bile to the gallbladder and the gallbladder can't empty itself to deliver bile to the intestine. This means I functionally have no gallbladder. Aside from a couple of temporary infections, the gallbladder has been in good health these 11 months, but I can't "use" it. The purpose of the gallbladder is to store bile that's being semi-continually made in the liver until you eat something with fats in it. Then the gallbladder knows to dump it's stored load of bile into your intestine so you can fully emulsify (break down) and digest the fats. Without a GB, the liver is dribbling some bile most all the time and it's wasted. So you have a shortage of bile when you need it the most. If you can't digest the fats, it generally gets stored as fat on YOU, often at the belly. (Your liver does secrete a bit more than average bile whenever it senses you just ate fats, but not enough.) I started those anti-cancer smoothies in mid Jan 2023 for a pleasant lunch. But then I remembered all the above AND what Dr. Bob Marshall has said for years, that the highest bile flow rate is from 10am to 2pm, therefore people with no GB should eat their high fat meal at lunch. (He learned this from TCM, Traditional Chinese Medicine.) I never thought this would apply to me as I've worked to keep a healthy GB for many years. But when these factoids came back to mind, I realized I need to shift the smoothie to breakfast and shift my occasional buttered breakfast eggs to lunch! Yeah, it's culturally backwards, but I live alone so it doesn't matter. It's been working out well all this time. And by having a 32 oz smoothie preceded by 32 oz of clean water upon arising, I've gotten a good chunk of my water for the day down already. Also helps keeps the bowels moving well, usually one per day, but sometimes two or even three. I mentioned all this GB stuff in part because I do know I've lately been having fats at night. While I've learned to have popcorn with no fats, lately I've splurged and added some butter. Also some other fat-containing foods at night. (It's hard not to.) THIS may be why I'm building belly fat again. There's one more potentially significant issue concerning my gallbladder, of which mysteries remain somewhat. My former natural practitioner, now retired and out of state, had developed an amazingly effective olive oil based procedure to purge gallstones and other debris from the GB. Over time, I've learned that most of the similar procedures out there are inferior to this one. (I feel lucky.) Over 20 years ago, I used his procedure to do my own GB purge the first time. Someone said a good rule of thumb for those eating the American diet is do it every 10 years. Many GBs have been saved from the needless clutches of surgery-eager cholecystectomists. (But in an emergency, you SHOULD have it removed. Most gallstone situations are NOT emergencies.) I had been thinking about doing my 3rd purge for awhile before the jaundice hit me Nov 15, 2022. Maybe the jaundice reminded me of it and that perhaps purging again now will help the jaundice. (I didn't know about the mass yet.) I got the instructions out and bought the few items needed. Remember that my PCP ordered bloodwork, and having studied that, she ordered an ultrasound. As I didn't know that gallstones might not be connected to this crisis, I purposely did not do the purge until AFTER the ultrasound was taken. I did my purge on Dec 7-8, 2022. It went moderately well, though not as comfortably as in the past. But comfort has some variation with this procedure. I WAS in touch with my retired prac friend during this. I DID get a bunch of stones out again and this time I saved them for awhile. (Normally, people let them flush down the toilet.) Some were at least 1/2 in. long. We say "stones", but none of them is hard like a rock. I rinsed them off and saved all of the larger ones in the bottom of a 2.5 gal. paint bucket. Here's a picture of them at least a month later. Though now rather dry, they had not shriveled: https://www.facebook.com/photo/?fbid=246788555051455&set=a.246791621717815 Here's the mystery. By Nov 15, the melanoma had spread from the primary tumor (shoulder) forming a new tumor crushing the bile duct causing the jaundice. But the GB purge wasn't until Dec 7. How is this possible? The procedure enabled my GB (and connected ducts) to pass the stones out, yet the common bile duct was already closed off! How could the stones get through?? Remember that the stenosis (constriction) of the duct was so bad that the duct above the mass was bloated to 20 cm! Sounds to me like the mass was a powerful fist not letting ANY liver fluid or any THING pass through! I think I can infer an answer. Yes, the mass was crushing the duct. But the endoscopist obviously had been able to "push through" the pressure to install the stent. So I'm guessing that the pressure exerted by the liver itself must be relatively weak, so weak that it may not have taken much constricting pressure to close off the duct and gradually inflate the liver and upper duct network. However, I just learned that the GB is a kind of muscle, and when you trick it into dumping all of it's contents, it's not a trivial force. And there is a lot of olive oil involved (think slippery). So the GB force must be stronger than the liquid pressure from the liver and also stronger than the constricting force of the stenosis. Therefore each stone pushed right through the stenosis with no problem, YET the stenosis closed right back up preventing liver fluid from escaping. Remember that at this time, I had NO idea about a "mass". I had just learned rapidly all I could learn about bilirubin conjugation (a liver process), not masses or tumors. In retrospect, I am thankful that I providentially thought to do that purge when I did, because if I hadn't, those stones would still be in there, which probably would not contribute to the good health of a stagnant GB. It remains to be seen how easily my EMPTY GB will reacclimate to storing and expelling bile. I'm dreaming of celebrating with a box of Publix fried chicken AFTER 7pm, ha ha! Part 4. As I've been reading over some of the stories of you all in the Facebook Stage 4 Melanoma group, my story has raised many questions in my mind about YOUR situations, and I may end up asking YOU questions. As horrible as I've felt at many times early on and even thinking I needed to start planning for a possible soon demise, I have read some of the worse horrors of you all with great sorrow. But also there is the contrast between my worries that my own case may take most of a whole YEAR (2023) to beat, and MANY of YOUR stories of fighting this plague for YEARS. I don't want "years" for any of us! IMMUNO PLAN CLARIFIED I still have numerous questions, even about my own situation. The knowledge I've gained from my good onco guy has not been easy to pull out of him. For example, I didn't know that the standard ipi/nivo protocol for melanoma was 4 double infusions 3 weeks apart, then every 4 weeks thereafter with Nivo only, for 1 year minimum. I knew one might be lowered or discontinued at some point, but didn't know the particulars till it was time for it. And in this case, I was a bit mad over dropping the Ipi. The surgeon had just tried (politely) to push surgery on me again, and I was defending the immuno route which was already showing signs of working! I begged my onco to continue the Ipi. I told him I could see why some might stop any immuno or chemo due to patient intolerance of side effects. But I reminded him that I was now immune to those effects. He said, no, the reason to stop is that Ipilimumab has been shown to have significantly less effect after 4 infusions, so it'd be a waste to use it. But its stoppage is also part of the standard protocol. I asked, "Aren't there other immunos we can add?" (I knew of at least several.) Plus he was calling the Nivo-only path "maintenance". I don't want to "maintain" this cancer; I want to aggressively "blast it outta there"! He said there were not any other immunos that would be appropriate in my case. SIDE EFFECTS MYSTERIES AND DOCTOR VIDEOS One huge question that may take a long time to circumnavigate: How does detoxing these chemo/immuno metabolites (as I described earlier) fit in with the current model of irAE (immune-related Adverse Events) management AND causes? In late October, one of you posted several shocking videos about irAEs, shocking to me as I had NO idea that the industry has developed a very thorough approach to the complexity of immunotherapy side effects. Here are two 13 min. videos by a couple doctors (Dr. Evan Lipson, Dr. Joshua Reuss) addressing this subject of immunotherapy side effects: https://www.youtube.com/watch?v=2MAmESB4czA https://www.youtube.com/watch?v=P1b_bSnyR1M Here's a 3rd doctor, Dr. Jeffrey Weber, talking for about a half hour. Very very technical, but although much will go over the head of most of us, enough meat gets through clearly and helpfully. https://www.youtube.com/watch?v=37ze8NJGFhkj The thing they all have in common is that they're alleging that it's an excessive or misplaced action of the immune system that causes inflammation of healthy tissues, whereas I am alleging that it's the general toxicity of the IV drugs that escapes the liver's clean-up attempts and gets absorbed through the intestine. I cannot refute anything they've alleged. Yet I cannot deny that I have joyfully been WITHOUT my own two side effects from April into November thanks to this wonderful calcium bentonite clay. As I implied at the start, I've not made an effort to go back and read every post in this group. But the recent ones, those coming up in my newsfeed and talking about unpleasant side effects, have caused me great sadness saying to myself, "Oh I wish I could share my story right now and give them a bottle of Medi-Clay!" But I've been burdened down with my own struggles for months. Yet now I HAVE written most of the story including how this clay has been part of my melanoma-life. I suspect if I was to contact those doctors making the above videos and tell them of my experience, they'd probably say "you're only 1 person" and disregard me. Maybe if some of you all who are still enduring side effects were to try it and experience the relief, then I could say "there are X more patients that I know of who've also gotten relief." Maybe there are only SOME side effects that can be detoxed in this way. But even if it only partially helps someone, won't it be worth it? The price isn't bad and it's very safe to use. Let me know here or in a private message if you have questions. Just so you know, I absolutely DO NOT get anything if anyone buys the clay (in case some might think I'm into kickbacks of some kind). I just want to see needless side effect suffering STOP! I actually wish I had had MORE effects so that my report of their elimination might carry more weight. But I am VERY thrilled and grateful that I seem to be extremely on the mend, as well as free of symptoms! I'll update my own story here as my case continues. If you've read all of this, thanks for reading and I hope you were blessed! And speaking of blessing, I want to share the last video I watched, which was a 1.5 hour documentary about Dr. Jim Allison's courageous efforts and battles against the system to develop the very first immunotherapy agent, "our very own" Ipilimumab. My whole perspective of the pharmaceutical industry has been altered by this amazing story. And my heart is grateful to Dr. Allison for all the many good things that have since come because of his pioneering spirit and tenacity. I will watch it again soon. https://www.youtube.com/watch?v=WAql3rEZUWs