Well, I posted that last post when I was in a state of fury of the endless issues I’d had in trying to get the results of my recent scan which had to be moved up because I was dealing with some physical issues…
- August 11, 2020 at 10:40 pm
Anyways, because of that, I should not have been surprised to get a call a couple of hours later explaining that despite 1.5 years of no treatment and all good news I have some new lesions. This time, I seem to have developed multiple lesions in the lining of my stomach. I don’t have the full report yet so I don’t know how many and I will be asking them to do a biopsy to confirm that it’s melanoma (if anyone has had this before and had it not be melanoma PLEASE chime in!!). But, in an effort to be fully prepared, what treatment should I consider next? I’ve done brain surgery, brain radiation, Nivo as a single agent, then Ipi/ Nivo (only managed to do 3/4 treatments because my AST/ALT flew up to 1600/2300) and also had radiation to the lungs once we saw Ipi/Nivo was working. So my question is…do I retry Nivo (I can’t imagine they’ll let me retry Ipi)? Do I try the BRAF inhibitors (I’ll admit that those terrify me because of how the melanoma can mutate but I am BRAF+)? Do I try a Phase 3 trial? What about TILS or intralesionals?
All thoughts, advice and encouragement are appreciated. I have a beautiful 2.5 year old girl and my mind and heart are already racing with anxiety. I hate this damn disease.
Thank you in advance for your help. It is so, so, so appreciated.
BubblesParticipantSo sorry you are facing this, Amanda!!! BUT – you do have options. Here are my thoughts:
- August 12, 2020 at 12:39 am
1. A biopsy is essential. I don’t know how these “lesions” were described, but that doesn’t really matter – as you can’t know what anything is unless a biopsy has been done. Lesions may be in the stomach for many reasons. They could be melanoma or some benign condition caused by something unrelated. And yes, it could even be a different cancer. I was diagnosed with ex-goblet cell adenocarcinoma of the appendix, found on what was to be my “last” follow-up scans for melanoma. However, that was/is an extremely rare cancer and not at all normal in a melanoma patient!!!! But, my point is – you don’t know – til you KNOW!!!
Should this turn out to be melanoma…..
2. BRAF inibitors – I’m not sure what you mean by “melanoma can mutate”. If you mean develop resistance to targeted therapy – then yes, that can happen. But, there are those who are well maintained on them for years, Dick K of this forum is one. Further, the BRAF/MEK inhibitor combos can work wonders in getting rid of melanoma in BRAF positive patients and allow them to then follow it with immunotherapy – like another course of nivo alone (if your docs don’t want you to repeat ipi) – or another systemic treatment – after the tumor burden is diminished.
3. I am a big fan of intralsional therapy. There are zillions of articles about them on my blog. They work best when combined with a systemic therapy like anti-PD-1. You do have to have an injectable lesion. I don’t know if docs would be willing (or able) to inject a lesion in the stomach.
4. Trials – It is probably too soon to make any serious decision about that jus now. However, it is pretty easy to start looking at those options if you are inclined. Here is what comes up when you put in Stage IV melanoma, recruiting, and USA: https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Stage+IV+Melanoma&term=&cntry=US&state=&city=&dist= That search currently lists 105 trials. It is a lot to plow through. Some are easily discarded given your status. However, it might be worth a look to have some options to speak to your doc about in case it is melanoma. Trials are not for the faint of heart. Here is a post I wrote about them, if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/01/clinical-trials-lies-damn-lies-and.html
5. Breathe!!! Not easy in melanoma land, especially with a little one. But, it ain’t over yet. Figure out what these lesions are. Talk to your doc about your options. Then, if you want it – there are plenty of us here willing to help plow through trial treatments, etc. Edster is bound to have some excellent vids!
Again, sorry you are facing all this. Hang tough. Ask more questions as you have the need. I will be keeping you in my thoughts and wish you my best whatever you find or decide. Celeste
Mark_DCParticipantHi Amanda, am sorry for the bad news, I thought you were in the clear so I was very sad to read this. Glad that Celeste wrote in with great advice while I was reading as I did not know what to say.
- August 12, 2020 at 12:57 am
I think Celeste has given excellent advice. Its hard to make decisions without seeing the scan report – the report may contain indications of what they think it is or recommendations. For me they sometimes see things they are not sure about and recommend further observation. So you would need to see the report. But, as Celeste mentioned, it may not be clear what it is, it could be something else so you woujld need a biopsy. You are BRAF+ and I am not and I think that does give you extra options, I dont think it mutates just often the treatment wears off (but not always). I like intralesionals too as they worked for me (so far) – my case was low tumour burden but it might work in other cases as well. For me it was intralesional PLUS immunotherapy, I think the intralesional made the tumour hot so the immunotherapy knew what to attack.
Like Celeste my approach is to breathe. I do my scans about 5 days before my appointment to make sure there is enough time for the scan to be read (typically this only takes a few hours but sometimes this is delayed) or to allow for a re-take if the scan was not done properly (this has happened to me). Once I do the scan then i try my best to forget about it, i dont look up the results online, i wait until the appointment for my doctor to give his assessment and to bring out the report. Typically i only lose sleep the night before the appointment; i am generally anxious around the time of the scan (once i tripped over and managed to tear my suit trousers, for my most recent one i had a painful bike accident in the rain) – the time is almost always jinxed but i usually can sleep. If the scan results are bad then with my previous oncologist i would ask questions but then email more detailed questions if i had missed anything. Or have them ready for my next appointment (which used to be every 2-3 weeks).
I would guess the doctor will have a plan like putting you back on immunotherapy and then considering the other options. But much depends on the scan results and also on a biopsy too, may not make any decisions until then. I think Celeste puts it really well, i hope the scan report is better than you think,
Good luck and best wishes Mark
- August 12, 2020 at 1:00 am
First, I’m so sorry your scans were showing lesions, I know you have a little one and so sorry you. I’m so glad Bubbles answered, I was thinking about this but knew she would have thorough information. I agree, biopsy is the first step and then plan of action if confirmed. Just wanted to say we are thinking about you and hope you don’t have to battle the beast again, but if you do, I would definitely think about BRAF inhibitors. There have been durable responses and it can reduce tumor burden depending on the situation, which might be valuable when considering clinical trials down the road.
I was trying to find the link that Ed usually supplies from Dr. Hamid’s synopsis on novel treatments when there is progression on prior treatments since there are various combinations they are trying. https://www.youtube.com/watch?v=fbSHUEbhTho&feature=youtu.be
So many hugs Amanda.
gopher38ParticipantThanks to Celeste for those suggestions/comments. Amanda, get a biopsy. This is not going to be melanoma. Warren
- August 12, 2020 at 3:24 am
- August 12, 2020 at 5:58 pm
I am recently new to this forum. such great people. I was diagnosed in late February after being misdiagnosed 4 times. I am currently going to MDA for treatment. I am waiting for a biopsy before moviing to the next phase here. My tumor was originally in the parotid gland. No Primary. Returned 2 weeks post surgery and radiation to my neck. 6 nodal tumors. I was put on NIVO. Just completed my third month scans and the tumors in my neck are down to 1 but have a tumor develop in my liver. Thus why I am requiring a biopsy. I believe like Bubbles and everyone else has stated above, wait for the results and the see what the oncologist has to say. You got this girl.
Prayers Your way,
MelMelParticipantSorry to hear your unfortunate update but I would like to offer support. I have a friend who went through a similar diagnosis. After being NED for about a year, and while still on Opdivo, last summer she developed a 1″ tumor in her omentum (layer of fat which holds the abdominal organs in place). Following a biopsy, it was determined to be melanoma. She had the tumor removed at MD Anderson and stored for possible TIL treatment, should she need it in the future. So far, she is doing o.k. and she has continued her regular Opdivo infusions. Her CT scans just moved from 3 month intervals to 6 months.
- August 13, 2020 at 12:18 am
My friend went through hell and back with her five year melanoma battle and the last surgery was a walk in the park compared to everything else she had undergone in the previous four years.
I would definitely request a biopsy as a first step so you have a clear idea and know exactly what you are dealing with.
Best wishes and try to stay strong and remain positive.
sing123ParticipantOh Amanda, I am so sorry to hear that we are both back seeking treatment. After my initial feeling of being overwhelmed, I try to remind myself that we have different and better options than even just a few decades ago. And maybe the ones we’ve had have bought us time. And that we can keep going like this until something works for good. I’m sorry that the combo didn’t work for you. It is what I am about to start. Best to you. Keep us posted.
- August 13, 2020 at 6:27 pm
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