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- This topic has 36 replies, 10 voices, and was last updated 2 years, 6 months ago by TimCT.
- February 7, 2020 at 8:04 pm
I was just diagnosed on Monday evening with metastatic melanoma. A little of my backstory before a couple questions:
Since August/September I’ve been having non-specific symptoms on and off: fatigue, chills, body aches, dry & tired eyes. At the same time, it felt like I had pulled a muscle in my armpit. After rest, both issues subsided after a couple days. But they would come back. Then I felt a sore lymph node in my neck that had swollen up, but it went back down. Then my armpit was sore again and it occurred to me that it wasn’t a pulled muscle, but also a swollen lymph node. Again though, lymph nodes went back down, symptoms subsided.
In November I had enough of not being able to shake whatever this was so I saw my GP, who sent me for 31 separate blood tests over the course of November/December. Nothing came back as out of the ordinary except that I tested as ANA positive. The upshot of all the tests was that I was being sent to see a rheumatologist, because of the ANA positive result. The bloodwork also showed that I had an EBV infection sometime in the past, so perhaps that had been reactivated. The prescription was rest and vitamin C until the rheumatology consult.
About 3 weeks ago, my neck started to swell under my left ear, and it was quite painful. As the swelling increased I could feel the pain behind my left eye, up the back of the left side of my head, on the left side of my jaw, in my left ear. I called my GP to report my new symptoms and was told the doctor would call me back if he had any questions. A week later, his PA called to say wanted another CBC.
I had been voicing my frustration all along to my wife, who is an OR nurse. She had gotten fed up enough with my complaining to mention it to a surgeon that she works with, who asked her if she wanted him to order an ultrasound for me. She did, and the next morning I was having an ultrasound of my neck, which showed a bunch of enlarged lymph nodes. The day after that I was in his office for a fine needle aspiration, and the day after that I was at the hospital having the largest lymph node removed for biopsy. I think the surgeon was thinking this was going to be lymphoma, and we were all very surprised to hear on the following Monday (2/3) that the pathology report had come back and this was melanoma.
On Tuesday I was in an oncologist’s office who gave me the rundown on the immunotherapy meds available, response rates, side effects, etc. He also ordered a PET scan and a head MRI for Friday the 14th, and a visit to a dermatologist on the 25th.
So after a long time of seemingly doing nothing, there has been a flurry of activity over the past week and a half that has resulted in this diagnosis.
I have a couple questions. First, there is no obvious primary site. The surgeon who removed the lymph node looked me over fairly thoroughly and didn’t see anything that looked abnormal. Will a PET scan show a lesion on the skin? I had an eye exam in September as well, and they didn’t see anything of note then, either. Is the PET the be all/end all for determining all the places the cancer is?
Second, its been a long week of waiting and trying to wrap my mind around this diagnosis, and it’ll be another long week of waiting for the scans on Friday, and then however many days until they’re read and communicated back to me. Its sorta like this is the calm before the storm – is there anything I should be doing physically to prepare for treatment?
Thanks for listening, and for any help/advice!
tkossParticipantI tell everyone, ‘the country club killed me’ meaning some 50 years ago I went summers at the pool or running around bare waisted. I was diagnosed after routine exam by dermatologist who found suspect mole on my back, a place I couldn’t see. At the age of 63.
- February 7, 2020 at 11:01 pm
since diagnosis and various scans and surgeries my time line is a little messed up, but on two occasions I got a small lump in my axial(armpit, and believe me it took some time to figure out what surgeon was referring too when he said ‘axial”) OPPOSITE of where he removed 4 lymph nodes. I thought. OMG, his surgery knocked the melanoma loose and its coursing thru my body. Turns out the lumps went away and were probably just a reaction to changes in my lympathic system. To wit; I am down 4 LN’s. My thinking is they are there for a reason and if their gone something has gotta change.
as to where your initial injury was, I cannot say. but everyone , that is the pros’, agree that melanoma is related to sun exposure so I would suspect any part of you that had prolonged exposure or maybe one intense exposure. I recall a time in my late teens when I was building forms for a foundation. Your bent over at the waist for 8 hours. That day I got wicked sunburned like I had never been before;. so I wonder if that might be the exact moment the wheels of melanoma were set in motion. Its an interesting thought.
as for treatment prep, well I continued to drink and smoke cigars,. I stopped exercising because of disruptions of surgeries, and ate a lot of junk food , thinking if weight loss is a problem, then I ought to bulk up. that was a nice delusion until I started monotherapy and haven’t lost and ounce. so I am back to healthy eating and exercising.
the pro’s never told me that I needed to do anything by way or preparation.
You have found a good resource here. My docs , I think. are good, but I found someinformation is left out of discussions with them. They assume you know things you don’t and you don’t always know the questions to ask till you have left your appt. This is an ace resources to fill in gaps in your knowledge.
So sorry you’ve had to join this club.
- February 8, 2020 at 1:53 am
In 2010 I was diagnosed with an unknown primary. My culprit was a swollen lymph node in my left arm pit. LucyGoose, who’s also on this forum had an unknown primary and she had lymph nodes removed from her neck in 2019 and was treated at MD Anderson. She’s doing well. You may want to touch base with her.
A PET scan will not be able to show a lesion on the skin. The skin exam you have scheduled for the 25th will be VERY thorough to confirm that you have an unknown primary.
Less than 10% of all melanomas are unknown primaries, so they’re relatively rare. Since they are rare, you should make sure you are being seen by a melanoma specialist at a major medical establishment that has a department dedicated to melanoma.
The head MRI is not fun because in order to keep your head from moving, you have to wear this cagelike thing on your head. After they strapped that thing on my head I just kept my eyes closed until the MRI was done.
Having an unknown primary sucks because you are Stage III right out of the gate. However, having an unknown primary also means your immune system recognized the melanoma and was fighting it, hence the swollen lymph node(s). One theory behind unknown primaries is that there was a melanoma lesion on your skin that your immune system zapped, however some cells escaped into a lymph node where your immune system continued fighting.
- February 8, 2020 at 2:22 am
Sorry you are here, but glad you have reached out as this forum is filled with smart caring peeps. Linny gave you an excellent breakdown of unknown primaries in melanoma. I agree with that explanation of your probable stage and need for a melanoma expert (or at least an oncologist who sees lots of melanoma patients) as well. Stage III melanoma patients have both immunotherapy and targeted therapy options (though the ipi/nivo combo is approved for only Stage IV patients currently). Here is a link to a primer I put together of current melanoma treatments that may interest you: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
Hope this helps. Melanoma is not fun. But there is hope!!! Ask more questions as you have the need. I wish you my best. Celeste
Thanks so much guys! The oncologist offered to get me set up with Harriet Kluger with Yale. Geographically, traveling for treatment in the Yale group is much closer to home and I do believe she specializes in melanoma.
- February 8, 2020 at 4:24 pm
I’ll keep you guys up to date. Thanks for all the info!
- February 9, 2020 at 4:45 am
I’m a patient at Yale/Smilow and I can tell you that you are in good hands. My doc is Mario Sznol, but I have also met with Dr. Kruger and I can tell you that patients that I know who have her as a doc love her. Having said that, don’t be afraid to seek a second or third opinion, no matter who you see first.
As for prepping for treatment, all I can tell you is to treat it like a bad cold. Rest, fluids, and a varied diet. Also, I know that this is the scariest time for most people because there is so much that’s unknown or undecided. Once you find out for sure what you’re dealing with and come up with a treatment plan it will get better.
TsvetochkaParticipantUnknown primary here, too. I’ve been kind of surprised that they just accept that. No talk of a dermatologist anywhere at all, so far. I’ll have my first PET scan on Wednesday, and I was curious if that could find a primary, so I’m glad you asked.
- February 10, 2020 at 6:34 am
I was diagnosed in December 2010 after and enlarged lymph node was removed from my left arm pit. After my surgeon was given the results he gave me a skin exam and found nothing. On my second visit back, it was clear that he had consulted someone about my case because he took a look at my hands and finger nails and found nothing. He was just a general surgeon and referred me to Johns Hopkins in Baltimore, which then took over. I had a CT scan with contrast done at my local hospital that showed there was no suspected melanoma anywhere else in my body. At my visit to the melanoma department at Johns Hopkins I was seen by their melanoma dermatologist and a melanoma surgeon. At the visit with the dermatologist there, I was told that they were going to go over every square inch of my body and if a suspicious lesion was found, they were going to remove it. Not only did the doctor look me over, so did several of his students. Having medical students look me over seemed a bit over the top, but in retrospect, they were all looking to score points with the doctor so they were very thorough, which is a good thing with a suspected unknown primary. No suspicious lesions were found. The next step was seeing the surgeon, who told me they were going to remove the rest of the lymph nodes in my left arm pit after she gave me another skin exam.
- February 10, 2020 at 2:57 pm
Bottom line is finding what may be a primary on your skin is done visually. It’s all the more reason to be seen at a medical facility with a department and doctors dedicated to melanoma. They deal with this stuff on a daily basis and know what to look for.
- February 18, 2020 at 4:06 pm
Had my PET scan and brain MRI on Friday. The MRI wasn’t pleasant, but do-able. Sometimes the MRI was louder than the music piped into the headphones! Only about 25 minutes long, so not terrible. And on any other occasion, I would say the PET was enjoyable. I nodded off a handful of times with the warm blanket and the white noise.
I was prepared to go the weekend (and the Monday holiday) without hearing anything, but my oncologist called Friday evening, and I was totally unprepared to have that conversation. However, he led with “there’s nothing in your brain” and continued to tell me that there also wasn’t anything on any of my organs. It was only in the lymph nodes. Though, the good news was tempered with the fact that it was “quite extensive” in the lymph nodes on my left side, cervical and axillary, and two on the right side had joined the party. He said he would stage it somewhere between a 3 and a 4. He said he was also confident that we could “make it disappear with immunotherapy”. Didn’t mention a neck dissection or any other surgeries.
As serious as stage IIIABC is, I’m trying to remind myself that what he told was good news, under the circumstances. Follow up with him tomorrow morning, and then on to talk to Dr Sznol on Thursday morning. I feel sorta bad about telling him tomorrow morning that we’re going to be treated at Smilow, they’ve been so great at the Hartford group with getting me in for testing, procedures and communicating results to me quickly. Its been such a departure from the ‘treatment’ I was getting with my PCP, but it sounds like its very important to get hooked up with a melanoma specialist, and it won’t be quite the distance to drive to receive treatment, though I’d go to Siberia in the winter if it meant beating this!
- February 21, 2020 at 9:17 pm
I met with Dr Sznol on Thursday, and I was very impressed not just with him, but with the whole operation at Smilow. It’s quite a departure from the PCP that would have a PA return my call 5 days after I left a message. The team at Yale/Smilow has my vote for anyone looking into being treated in Southern New England. I had two physical exams from the fellow as well as Dr Sznol, and after that and the review of my scans, he’s decided that I’m stage 4, due to how extensive it is in the lymph nodes, and being in three different spots. Still no sign of a primary, and it doesn’t sound as though that’s particularly important at this stage of the game, though I’m still going to see a dermatologist on Tuesday. I imagine I’ll need to establish care with one going forward to keep an eye on anything suspicious looking on my body.
We discussed at length all the various treatment options available to me. Turns out I do have the BRAF mutation, so that option would be open at some point, though it sounds like while it seems to work really quickly, the response isn’t particularly durable for a lot of people. There are trials going on, but in his opinion none sounded like they would be more beneficial to me (at this point) than the vaunted standard of care, Opdivo/Yervoy 4 times, 3 weeks apart. So that was his recommendation, and that’s what I’ll be doing. Treatments start on Thursday the 27th (provided that insurance doesn’t drag their feet) so I’m pretty excited to get going and hopefully be on the road to recovery.
I spoke with my aunt, who was a member of the initial trials for Yervoy (on its own) and only had diarrhea as a side effect. She just came off Opdivo after a year, and she said it only made her tired at times. So, fingers crossed that we share enough of the same genes that the side effects will be just as mild. Fingers crossed!
Tim, it’s great that you have a plan and are getting on it so quickly! It also sounds like you are going to be able to work well with the team at Yale/Smilow … that’s so important. Good luck with the upcoming treatment, and keep us posted!
- February 22, 2020 at 9:33 pm
Went for my first treatment yesterday! Bloodwork first thing, quick exam with the doctor, then on to the infusion room. First bag was about 15 15 minutes, second bag was about 30. I was home by lunch!
- February 28, 2020 at 1:39 pm
I think I’m going to give the office a call today, though. Because of the location of some of the tumors (left side of my neck, from under my ear down to my collarbone) its been giving me headaches sometimes, and my neck itself has a tendency to ache pretty badly on the left side. I’ve been getting by with ibuprofen, but last night it hardly took the edge off the pain. I’m pretty sure I’m quite a bit more swollen in the tumor area as well, which I’m taking as a good thing, that an immune response is causing inflammation (though I didn’t think it would start to work that fast) but I still want to confirm that and see what other options I might have for pain while I’m going through this inflammation.
Still super excited. I’m hoping yesterday was the first day of the rest of my life!
Just a couple updates.
- March 3, 2020 at 3:46 pm
The headache was making it hard to concentrate on anything at all and I had to go home from work on Friday. I called the office and they said it may very well be an immune response that fast and to let them know if the pain got worse. It didn’t, so I didn’t. By Saturday afternoon the pain had gone away, so I thought I was good. However, sometime between Saturday afternoon and Sunday morning I developed a low grade fever, 99.6. Felt generally crappy on Sunday, and I was awake in the night feeling pretty feverish. Tylenol at 2am, though I didn’t take my temperature. Better by Monday morning, no fever, but I called out anyway. I was shot from being awake more or less all night and laid low all day. Slept through the night last night, and here I am at work.
I’m wondering if the inflammation and fever had anything at all to do with the immunotherapy, or if I just had a bug? My 5 year old daughter was under the weather on Saturday, so it could very well be that. Or maybe not.
That’s been the hardest part so far, not really knowing what’s going on inside my body, with the ipi/nivo, or with the cancer. It’s hard to not imagine the cancer multiplying and spreading and wrapping itself slowly around my throat, and I just want the meds to start beating it back. The headaches were killers but I really want to believe that it was a positive side effect. I guess there isn’t much else to do but wait. next infusion on the 19th…
Second treatment of ipi/nivo went off without a hitch yesterday. Labs came back with slightly elevated ALT and AST (about twice the normal limit), though its my understanding that they don’t get worried until you get closer to 10x the normal limit. Still, they want me to go for labs in a week to keep an eye on it.
- March 20, 2020 at 1:44 pm
It was extremely spooky at Yale New Haven hospital yesterday. I was greeted at the door right off the parking garage (which is a separate for only cancer patients) by two people in masks and a Yale cop – they’re enforcing the no visitor policy, and wouldn’t let me through the door until they confirmed that I had an appointment. I heard that they had staff at the main entrance in full hazmat garb. I had the waiting room at the blood draw station to myself and was whisked right in half an hour before my appointment. Though, business as usual once I was in.
Over the past few weeks the giant mass in my neck has shrunk noticeably and I haven’t had any of the associated headaches in about 2 weeks. Dr Sznol agreed that everything seemed smaller, though with how tough it is to measure, he’s left with palpating as much as he can to literally get a feel for my disease. For the swelling in my armpit, for example, he remarked that it certainly didn’t feel like 3cm, as was his estimation 3 weeks prior. So all good news so far!
This morning I could tell that the mass in my neck has become inflamed, which I’m taking as a good thing. No pain this time around though, assuming because it’s considerably smaller than it was for my first treatment. Tired this morning and achy, but nothing I can’t handle. However, my shoulder hurts. Just one of them. Hurts as in it woke me up at 4am this morning, and I couldn’t find a comfortable position to lay in. I suppose I could have layed on it wrong, but its a little suspicious that it pops up the day after treatment. Though I would have assumed that if this is a side effect, I’d feel it in both my shoulders? At any rate, I’ll take all of this and much more if it means that my tumors continue to shrink. Thanks for listening everyone, I’ll keep on providing as much info as I can, if it will help someone further on down the road.
- April 20, 2020 at 3:05 pm
Third infusion down, one to go. Despite the general craziness at the hospital, it went off without a hitch as normal. However, they were in the process of moving – the melanoma department is on the 8th floor of Yale/Smilow, and they were packing up the whole department to make more room for covid beds. I’ll have my 4th treatment at one of their other locations. Probably better all around for everyone – immune compromised patients won’t have to go into the hospital proper, and they’ve expanded their capacity to treat those dealing with covid.
I’ve reached the “are the meds doing anything?” stage. After the quick result shortly after my first infusion of ipi/nivo, I haven’t had any more noticeable shrinkage, and I’ve even experienced more swelling. It seems to come and go, which I’m trying to convince myself is an immune response. Cancer wouldn’t grow and shrink and grow and shrink, right? This has to be inflammation associated with my immune system. I hope.
Of course, there are a hundred questions in my head now. My liver enzymes were slightly elevated the morning of my second infusion. Not high enough to delay the treatment, but my doctor wanted me to have labs drawn again a week later. When I did, they had come down some. Still not normal, but they had come down. And again, the morning of my third treatment, they had come down a little more. I suppose a normal person would be happy that their liver numbers were much closer to normal than they were a month ago, but now I’m associating the normal-ish liver numbers with decreased efficacy of the ipi/nivo, which I know I shouldn’t do, but its still hard to not read a thousand different things into every number trend now. Sigh.
One good thing I suppose is my LD/LDH level. First treatment was 304, it climbed to 316 at my second treatment, and is now 264 at the time of my third treatment. That’s good, right? Falling lactate dehydrogenase may mean less disease activity? I’m trying to find something to hold on to during those long nights, trying to be ‘patient’.
This amused me, which is rare when I think about this disease and its treatment: my right arm has been hurting. Started in the shoulder, and at times radiates down to my elbow, and sometimes out to my fingers. The pain gets pretty intense at times, so my doctor decided to X ray my shoulder my arm and shoulder, just to see if there was something strange going on, though he was of the opinion it was joint inflammation due to the ipi/nivo. When the X ray came back, the official impression was that my shoulder was “grossly unremarkable”. It made me chuckle to read that.
I had my last combo infusion on the 5th, and since then most of the positivity I was feeling has evaporated, unfortunately. Dr Sznol made a point of confirming that I hadn’t had any major side effects, or really any low grade ones since my first infusion. I was buoyed by the fact that my lactate dehydrogenase had fallen from 316 to 264, but at my last infusion it had gone back up to 276. My arm pain has gone away completely. I’m not particularly bothered by fatigue anymore. Right after my 4th combo infusion, one of the first offending axillary lymph nodes became very sore for 2-3 days, but that has since resolved. No idea what to make of that. Its still a swollen lymph node, its just not sore anymore.
- May 27, 2020 at 5:47 pm
The most worrisome is that the swelling in my neck, which had gone down so dramatically, has begun to swell again, and now in addition to my neck, its under my jaw and there are times that I can feel it when I swallow.
I suppose I’m thinking about all the not so great things because today is my scan day, the first since my initial MRI & PET. Today will be another brain MRI and CT scan for everything else. It will be a torturous wait to hear the results I assume – my appointment to discuss the results is June 2. Talk about a long weekend.
Time, hope the scans went OK. Try not to think about them until your doctor appointment (I try not to look at the results online ahead of time but try my best to forget until the doctor appointment – it usually hits me the day and night before when I become increasingly cranky). Its early days yet and the inflammation can be bad or good – when one of my tiny tumours disappeared years ago it swelled first which was scary but then dissolved). Dont forget you have BRAF options and other options too along the line. Good luck Mark
- May 28, 2020 at 3:37 am
Hey, Tim! I just wanted to send good thoughts for your appointment tomorrow. I hope that you will hear that the therapy is working and that you get a great plan for moving forward!
- June 2, 2020 at 2:36 am
- June 3, 2020 at 1:20 pm
Not such a great day yesterday, pretty disappointing. Sort of a mixed bag of results, and it doesn’t sound as though he was particularly happy with the quality of the cat scans and the comparison to the previous PET. The good news is that my brain is still clear, and there isn’t anything appreciable on my major organs. He said there are two very small ‘things’ in the upper lobes of my lungs, though it may just be inflammation. I guess the bad news is that the disease in my lymph nodes doesn’t seem to have been reduced in the area it started in, and it has extended now to under my jaw, I can feel it when I swallow.
We’re going to stay the course with the current treatment plan – nivo monotherapy for at least 8 more weeks, and then we’ll re-evaluate. He said that if the area under my jaw begins to impede my ability to swallow solid foods then we’d probably use radiation in that area.
Disappointed that at this point I haven’t had more of a response. He reminded me of the amount of disease I started with, so I suppose I could think of it like an ocean liner – you can’t slam on the brakes and pull a U turn, it takes a while to right things. I just hope my ocean liner isn’t the titanic.
Has anyone lacked a response on the ipi+nivo and then suddenly had one once they switched to nivo monotherapy?
In April 2018 a PET scan showed melanoma in a lymph node under my left jaw. I received radiation to it, while continuing to receive Opdivo immunotherapy. The radiation did not cause any problem. A December 2019 PET scan showed the cancer gone. I will have another PET scan on June 5.
- June 3, 2020 at 6:03 pm
In September 2015 I received radiation to melanoma in a rib. In November 2015 I began immunotherapy. Melanoma spread to several more of my bones. More is known now about melanoma treatments than was known in 2015. Immunotherapy and radiation should be concurrent or immunotherapy should begin soon after radiation.
- June 4, 2020 at 12:19 am
I kinda feel like I’m headed in that direction, it’s a foregone conclusions. Just a question of when. Part of me doesn’t quite understand why we’re not trying radiation now – I can feel it in my throat. But I understand the patience aspect, and a big part of me wants to hold on to plan A as long as medically reasonable. Just because I can feel it doesn’t mean its causing an issue yet, and I suppose there is still time for me to have a response, though I’ve sorta resigned myself to the fact that that ship has sailed for me.
- June 8, 2020 at 7:05 pm
I haven’t updated this thread in a while, there hasn’t really been much to talk about. But today is scan day, PET and brain MRI.
- July 24, 2020 at 1:08 pm
As mentioned, he wasn’t happy with the CT scan and the lack of comparison to the previous PET, so I suppose that’s why he ordered the PET this time around. The insurance company initially balked at that, but after speaking with the PA, they were convinced that it was indeed medically necessary.
Fighting the insurance battle has been a very unpleasant wrinkle – the insurance company also denied the claim for Foundation One testing for a BRAF mutation, twice, and its now been brought to the state level, with an outside agency reviewing to decide whether or not it was actually medically necessary. But I digress.
At my last appointment a month ago, we discussed a lot of things and really made no decision other than to stay the course for another month and see what the scans look like. I suppose that’s one of the many tough parts of this, all the waiting and seeing and not knowing and trying to formulate a plan for all the possible outcomes. I asked about radiation, as the mass under my jaw continues its slow march around my neck. He didn’t think radiation was the best option, after all, due to the amount of disease I have and how wide ranging it is, and would instead prefer targeted therapy if the scans show me to still be progressing. Part of his reasoning was that there are a lot of good trials available, but for many of them I have to have tried things like targeted therapy first, and have progressed while on them. He mentioned things like cell therapy, other immunotherapy meds that are being trialed, as well as the possibility of staying on nivo while I take the taf/mek combo. I did have an initial response, but I’ve still progressed, so I suppose the thought might be that if the taf/mek can knock back the tumor burden it would give the nivo more of a fighting chance? Maybe that’s just me trying to project some hope? We closed the discussion with something I keep trying to remember when I get down – its his opinion that there are so many trial options still available that our biggest problem is going to be picking the right one for me, one that won’t close any other treatment doors, as he put it.
I was excited after my last visit – a day and a half after the nivo, two spots on my neck swelled a bit and got pretty sore, which I took as an immune response. A week or so later, I spent some time in the sun and noticed some vitiligo on my arms (in places where I had a particularly bad case of poison ivy 3 years ago, but the loss of pigment is very obvious) and thought that perhaps after a delay, I was responding, though as I feel my neck swell, I think it probably developed when I had my first response in March, and this is the first time I’ve spent any appreciable time in the sun to notice the loss of pigment. The two spots that were sore don’t seem to have gotten any bigger, at least. Can your immune system chase the cancer around your body? Be actively eliminating it in one spot, while it grows in another?
So, here we go again on scan day. Hoping for the best, and trying to prepare for the worst.
ThinkingPositiveParticipantHi Tim. I read your whole story and really liked how you chronicled your experience in this thread. You gave me a real-life idea of what to expect this Tuesday and beyond. I found a lump in my left axilla last month that turned out to be metastatic melanoma. I had a primary three years ago on my nose that was removed, stage 2a.
- July 25, 2020 at 9:52 pm
I’m hoping the best for you! Be well! Cyn
- July 26, 2020 at 2:43 pm
Sorry to hear that you’ve progressed and you find yourself back here. One of the things I’m learning is that often times melanoma is something you end up living with, that unfortunately it’s never all that far away, even once you think you’ve shown it the door.
Glad to provide a bit of help. I’ve spent hours combing this site reading up on personal experiences, not to mention Celeste’s blog. I find that on those long stretches of time between doctor’s appointments and scans and infusions when you can’t stop thinking about what might or might not be happening inside your body, it helps to read about what others have gone through and are going through. Sometimes there is a thread of commonality that one can can identify with and hold on to and make getting through that moment, day, week a little easier.
Also, I’m a gearhead, so I’m a regular on a few different car boards. Lots of people do “build threads”, to document a car restoration. They start with a dilapidated hulk and show you all the steps they take to turn it into something worth driving to a car show. I suppose this is a “build thread” on myself – I’ll never be a show winner, but I’ll be very happy just to start every morning and stay on the road!
So, the sliding scale of what I consider to be ‘good news’ has been adjusted again.
- July 28, 2020 at 3:22 pm
The scans came back and still show nothing in my brain or my organs. Just in my lymph nodes. Unfortunately, overall, there is progression from my first PET in February to the one on Friday. Some areas are better, some are worse. The partial response I find very frustrating.
At any rate, I was assuming that he would recommend I start on taf/mek, which is what we discussed last time. Instead, he recommended a trial with intratumorals that should be open in a couple of weeks. Its NCT04291105, Phase 2 Trial of Voyager V1 in Combination With Cemiplimab in Cancer Patients.
I’m cheered by the fact that he doesn’t think I need the targeted therapy just yet. I spoke briefly with the research nurse, and they need to confirm my eligibility, as I’d be the first entrant without ever having taf/mek. Sounds like there is a chance this could disqualify me, actually. So we’ll see in a couple weeks. And I think I’ll start a new thread on this specific trial to see if anyone’s heard of it. Onward and upward…
So, we didn’t start on the trial immediately because it still hadn’t been reopened to enrollments because of covid, it was expected to be back online this week, and we set up an appointment to discuss today.
- August 11, 2020 at 1:17 pm
In the intervening couple weeks, the mass on my neck/under my jaw blew up and got fairly painful. Range of motion of my head had become limited, and I actually had to lift my head up a bit to open my mouth all the way. It was somewhat of a chore to swallow because of the swelling, and it hurt as well, when things moved around in there and the painful masses were impinged upon.
The last time I felt like this was after my first infusion of ipi/nivo, which preceded a dramatic shrinking of the original mass on my neck. So while I was hurting, I took this to be a good thing.
I let my doctor know, and he ordered a neck CT to make sure there wasn’t something other than what we were aware of going on in there. There wasn’t, and of course the CT showed enlargement of just about everything. I had a consult with a head & neck cancer surgeon who also looked at the CT, and put the scope down my up/down my nose to double check that there wasn’t anything going on that was unexpected, and there wasn’t. I suspect part of this had to do with making sure there wasn’t something going on that might have disqualified me from joining the trial, as well as getting established with the surgeon, I believe I’ll need to provide tissue as a requirement of the trial.
A few days after seeing the surgeon, the pain while swallowing began to subside, and I noticed that the giant mass under my jaw had begun to shrink. As of today, there is no more pain, and the mass is noticeably smaller (to me) based on range of motion of my head and jaw, as wall as palpating – its much softer and sort of more well defined. As in, instead of one giant interconnected mass, I can feel distinct spots where on mass seems to end and another begins, as though it might be starting to break up?
This might be all wishful thinking as I’m sure I’ve used up all my imaging credits for the next three months with the insurance company, and that is what will really tell the tale. But I feel better, and I guess that counts for something.
Now, I’m wondering if he’ll still want me to join the trial if it looks like I’m responding to the immunotherapy again. I didn’t have a nivo infusion last time, so maybe I’ll get one today if he thinks its worth giving it another go.
This whole being patient thing is really hard!
I almost forgot – some side effects have returned. There is a 2-4 hour window each day when I feel pretty lousy – achy and tired, I’d probably have a low grade fever if I took my temperature. Also, night sweats have returned. I’m hoping this all adds up to something good.
- August 11, 2020 at 1:48 pm
So, at the following appointment, my doctor wasn’t impressed with the side effects, and still felt that the just nivo wasn’t going to cut it. The plan was to still pursue the trial.
- August 26, 2020 at 1:23 pm
In the intervening 2 weeks, they were pushing hard to get me into it, so I could sign the papers during my visit yesterday. Also in the intervening 2 weeks, the whole left side of my neck and under my jaw blew up and became painful, almost overnight this past Friday.
So when I showed up yesterday, he was noticeably freaked out about the sudden quick progression in that area. As he described it, he immed.iately got cold feet about the trial, and that only got stronger as he palpated my neck and shoulders. He noted more fullness just about everywhere.
His demeanor changed, and while it was scary to contemplate my doctor being freaked out, this moment made me feel good about being in his care. He stopped, sat down, and got quiet for a few minutes while he thought. He told me that if I really wanted to, they could still offer the trial to me. He said that if I didn’t have the BRAF mutation, we wouldn’t even be talking about this, that I’d be signing the papers and moving forward. But the progression and its location gave him pause, and he felt that the BRAF inhibitors were a better option to get the sudden progression under control, rather than taking a chance on a trial. He thought it would probably be about 10 days before I began treatment on the trial – I’d need imaging and another biopsy – and he was worried that if in that span of time my progression continued at the current rate, I’d be in trouble and would be looking at issues with being able to breathe and swallow, instead of just discomfort. And our solution to that point would be experimental.
I took his suggestion, even though I had been optimistic about the intralesional therapy. My experience with doctors thus far in my 40 years is that many of them seem to have a playbook or script – if this, then this. This was new to me, to see a doctor be presented with new evidence, and to watch him digest that evidence, and then change his mind. Also, he wants to keep me on the nivo. He said that the vitiligo on my arms shows him that I am having an immune response, though its just not strong enough given the amount of disease I have. His thinking is that if we can knock down the tumor burden with the BRAF inhibitors, it may give the nivo some room to work, and might make my response more durable. The question is whether or not insurance will pay for the triplet, as he called it. I’m counting on Yale flexing its muscle in that area.
So, I have an infusion tomorrow, first time in 2 months, and then another one scheduled for 9/17, which is also my next follow up with Dr Sznol. The meds were ordered yesterday, so I should have them in about a week. I have to admit, I’ve been gritting my teeth through the uncomfortable symptoms of having all this swelling in my neck, thinking that I was playing the long game and I can gut it out now if it means a better result in the end, but I’m looking forward to some symptom relief from the fast acting BRAF inhibitors. I need a breather, to gather myself and move into the next phase of the fight.
Tagged: cutaneous melanoma
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