I arrived “here” as a 2017 stage 3B. Did “probably Optivo” in a blind clinical trial through 6/18. Clear scans until mid-Feb. (very minimal side effects, and the yervoy only arm was collapsed during the study) hence the “optivo arm” surmise. Doc shares it.)
- March 28, 2020 at 12:38 pm
Regular quarterly CT revealed a mass in the spleen area. You can’t biopsy that without big risk (“it’s just a bag of blood vessels”) so I had a PET CT
The PET CT revealed additional “very concerning areas” in the neck (small, non-palpable) and stomach fundous area. The plan was to biopsy the neck and get an endoscopy. The neck would be first, but not uncomplicated as it would require some isotope tracing, assembling a surgical team to work with radiation, etc.
On Friday before last, that was the plan. On Wednesday, my surgeon reversed course and closed his office. I was told all surgeries were cancelled – which we have all heard.
I called several endocrinologists and none are taking new patients, I assume the “no surgery” thing is also the case with endoscopy.
The day after the surgeon cancelled it finally clicked in my mind, “this stomach thing, if real, its gonna be inoperable and I’m done”.
Eventually I was able to reach my oncologist in the trial. I stated flatly “I can’t get the biopsies, the stomach would be inoperable, I need to be unblinded and put on the combo immediately”.
To my dismay, joy, surprise and lack of surprise the MD quickly agreed and said he would submit an emergency unblinding request to BMS.
In a way, when biopsy became unavailable, it has only accelerated the timetable to get to re-treatment. We are going on the “best evidence available” now which is only the PET CT.
The decision to “risk uneeded treatment” if the biopsies came back negative is easy in my mind. I am awaiting the unblinding decision this weekend. I’ll finally learn by BRAF status too.
So, I feel I am on the right course, and perversely this may work in my favor.
I’m just putting this out there to see if others with my bad timing are getting biopsies done. For our beloved expert panel; “do you have any other insights given this – hopefully fairly singular – set of facts?”
Thank you, be safe.
tkossParticipantpre-covid i a had a biopsy on mole and pathology report said everything but yank this thing out. Derm dithered and then decided , again pre-covid, it needed to be more thoroughly excised.
- March 28, 2020 at 1:12 pm
20 minutes before excision he called and said the State Medical Board based on Governor’s ruling. decided this procedure was non-essential.
waiting to see what how that will affect my infusions next week. i would not be surprised for insurer to work that into a reason to stop infusions.
Hey 3 -50,
- March 28, 2020 at 1:48 pm
Sorry for the melanoma crazy. Especially since it must be mixed with COVID crazy!!!!
1. Yes, I think the evidence provided in your scan is sufficient to seek treatment under these circumstances.
2. You might see if you could access a blood draw to evaluate ctDNA – for further edification and as a way to measure response to upcoming therapy. I wish these were more widely utilized for all of us and have been yelling about this for YEARS!! Here are a zillion reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=ctDNA&max-results=20&by-date=true
3. Starting ipi/nivo is a reasonable therapy for anyone who progresses on anti-PD–1 (or ipi for that matter) administered as a single agent. Reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=ipi%2Fnivo+after+failing+anti-PD-1
4. And finally this is what I would most likely want to do first – just how my brain thinks about these things – is this: IF you are BRAF positive, I would strongly consider doing targeted therapy as my next first step. Reasons? If what is showing up on your scans is melanoma and you are BRAF positive – then targeted therapy would work very rapidly. A very good thing in melanoma world and would show a reduction in lesion size very rapidly on repeat scanning. This would give you a definitive answer as to what you are dealing with AND get rid of the melanoma. THEN you could decide if you want to remain on targeted therapy as maintenance or switch to immunotherapy once the lesions have been diminished. (While targeted therapy works very quickly for BRAF positive folks, for most, the tumor can learn to work around it in about 9 months – though there are those who have been successfully maintained for years.)
Hang tough. Wishing you my best. Celeste
Thank you for the very timely rundown.
- March 28, 2020 at 5:27 pm
I had really only “a brief urgent phone conference” with my MD 2 days after the cancelled surgery plans. He did mention BRAF, but there really wasn’t even the time or opportunity to explore this discussion. I may have inadvertently misdirected the conversation away.
I have some understanding from this forum and your blog of the BRAF issue and may have been blinded by “durational relief bias”, i.e. “I can’t be on that non-durational leg already.”
I believe I get your point – I had the mindset of the immunotherepy patient where everything is kinda iffy. A more certain, even non-durational approach simply makes more sense, the diagnostic benefits being a nice side bonus – I mean I guess at some time in the future I can get an endoscopy done. And likewise, the combo.
Thank you for your concurrence on the validity of acting now. I hope to learn more shortly about what they actually keep in a rattie file, and compare that against what ctDNA might tell.
I am replying to my own comment to update for those looking at a similar situation. I did not have my BRAF status despite being in a clinical trial. They are getting it now, but that will involve now (3 years later) going back to the original sample. So there may be a lesson there – I signed off on being blind anyway, but you probably want this done at stage 3 not 4.
- April 9, 2020 at 11:36 pm
I went straight to the combo instead of targeted therapy. Was it a matter of efficacy after unpreparedness? I’ll never know. The companion understanding is that the advancement of tumor is not such that I “needed” to go right into targeted therapy. If available, it is still in the bag. Now we will see if it is available – possibly via biopsy if the sample doesn’t suffice. Which is where I came in, unable to biopsy. The next station is the 12 week phase one completion scan, so hopefully the BRAF status will be resolved in that time. And hoping that the stomach doesn’t bleed in the meantime. I suspect these are close calls even with all this great info and help.
Sorry you are having to wait for BRAF testing. This is why I always YELL and YELL about getting that testing done from the get-go. It is really unconscionable that post 2011 and the advent of BRAF inhibitors that it not be done upon diagnosis with melanoma, whether the patient asks for it or not. It still sounds as though you have a good plan in place. Wishing you well. c
- April 10, 2020 at 1:02 am
gopher38ParticipantI think we were in the same clinical trial, but I started a little after you, so the vervoy only arm had already been stopped. I had to be unblinded also, and was opdivo only. They also did the BRAF test, which started a fight with my insurance, which took 5 months to resolve. I see in your profile that you’ve got a slightly distrustful attitude towards insurance companies also. I’ve been fighting appeals with them for probably 8 months of the ~ 2 years since my Dx. Hope you were opdivo only and BRAF positive, and neither corona nor big-insurance gets in the way of you getting treatment.
- March 28, 2020 at 1:55 pm
Thank you for touching base w/ your input. True, can’t skip over the part where I might have been yervoy asymptomatic and already on the combo.
- March 28, 2020 at 6:05 pm
If someone saved me personally a quarter mill in drug costs by being a lab rat, I would show some appreciation! LOL
(I assume this happens, not sure how they break it down.)
Good luck in all the battles!
- You must be logged in to reply to this topic.