New lesions…need advice on next steps!

So sorry you are facing this, Amanda!!! BUT – you do have options. Here are my thoughts:

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

Hi Amanda,

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.

Thanks to Celeste for those suggestions/comments. Amanda, get a biopsy. This is not going to be melanoma. Warren

Miss Amanda,
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,
Trent

Sorry 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.
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.
Melanie

Oh 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.