Hello. I started treatment in Nov 2019 for Stage IV melanoma. I completed 4 cycles of opdivo/yervoy and was switched to monotherapy after that. I was only able to undergo one infusion of monotherapy because I started having major adverse reactions (hypothyroidism, hepatitis, ketoacidosis – now type 1 diabetic, major vision issues). I haven’t had any treatment since April 2020, but all my tumors have shown to continually shrink.
- September 9, 2021 at 3:05 pm
I had scans this last weekend and my oncologist told me yesterday that they see a new mass in a lymph node in my lung. He said he isn’t sure what it is, but it wasn’t previously present and they’re going to do a PET scan to see if there’s active disease. If so, they’ll move forward with a biopsy. My chart shows: left hilar metastatic lymphadenopathy. Does anyone have any insight on what this could possibly be? My melanoma has shrunk since my last scans – so I’m afraid it’s not melanoma because I’ve been responding to treatment all along – why would I develop a new tumor? Or is it possible that new melanoma tumors grow, even after responding well to immunotherapy in the past?
Just wondering if anyone has experience or knowledge regarding such a thing… Thank you.
- October 5, 2021 at 4:04 am
I have been off Keydruda over 16 months , but my last scan showed lymph node up in chest so I have had a pet scan.
Unfortunately it turns out active plus other areas as well. I am devastated as I completed 2 years of treatment no issues.
My experience was my upper chest felt sore to touch and felt off plus voice was going. I am now starting keydruda again and praying it works as braf negative.
Wishing you all the best and hope not mel xx
- October 5, 2021 at 9:13 am
Sorry you are dealing with this, Jennifer. There are many reasons for nodules to appear in lungs. However, melanoma sucks great big green hairy stinky wizard balls and is known for not playing fair. That’s the reason the word “cure” is practically unused for melanoma patients with researchers and oncologists preferring “NED” instead. I am glad you have a PET scheduled and plans for a biopsy if needed. Being proactive is the best step for all of us. Will be keeping fingers and toes crossed that this is nothing more than a red herring. Hang tough and let us know how things go.
I wish you my best. Celeste
Thank you both for your replies. The node lit up on the PET scan and I had a biopsy last week that confirmed it is melanoma. They are starting me on yervoy/opdivo again this weekend. Same drugs as last time, just switching dosing in hopes that I won’t experience such adverse side effects as I did last time. Fingers crossed because I’m in a new job! Luckily MD Anderson allows for immunotherapy treatments on the weekend!
- October 5, 2021 at 9:28 am
Wishing everyone the best and prayers to you all.
Hi Jennifer and Scooby (welcome back!)
- October 5, 2021 at 10:38 pm
I hope you will both be OK. I hope restarting treatment will work again as it did in the past – and that for you Jennifer the side effects will be less (although sometimes these signal that they are working) and that you can stay with the treatment.
I find this a terrible twilight disease – as Celeste mentions our doctors hesitate to talk of a “cure” as they know it can recur. Although for some of us it may never come back. or come back and then we get rid of it again and we keep going. Its something (a fear) that is always in the back of my mind, clouds my life but also makes me very happy to be alive too.
anyway i really hope the best for both of you
KAFParticipantI’m back on the boards again because I too had a lymphnode light up after being NED for 2 years after 2 years of Opdivo. My oncologist put me on Opdivo 1x/month with double the dose I had before. Keeping my fingers crossed that our side affects don’t come back. Keep us updated!
- November 19, 2021 at 12:00 am
soonerjenn14ParticipantHi Jennifer (I’m a Jennifer too!),
- November 20, 2021 at 10:54 am
So sorry to hear about this – I, unfortunately, know how awful this feels. I was told I was NED in June of this year after I had surgery to remove my primary tumor and a lymphadenectomy. Had my first 3 month check-up in September and they found 8 mets in my brain. So I’m back at it as well! I almost wish I’d never had a taste of NED…I was back at work and trying to find some type of new normal and now…well, here I go again with even worse circumstances.
Good luck with your treatment and I hope your side effects are minimal. Melanoma sucks but we are fighters!
Sorry to hear about your recurrences Soonerjen14 and KAF.
- November 22, 2021 at 9:28 am
I’m headed in for scans and my third treatment this round on Sunday. I’m nervous about this recurrence. I’ve lost quite a bit a weight (down 20 lbs since they discovered this – and this did not happen with my last treatment). I also can actually feel pain in my left lung/hilar area where the metastasis is located. I’ve also been experiencing pain in my left breast for a few weeks now. I’ve kept my doc aware, but he didn’t seem majorly concerned. I guess there’s nothing we can do until scans, anyhow.
Everyone.. keep fighting the good fight!
- November 22, 2021 at 10:17 pm
I lost about 25lbs too while on treatment – but that was because of loss of appetite and taste. I think I only wanted to eat spicy foods or ice cream. I was worried it meant something was spreading but I think it was just a side effect of treatment. After coming off treatment then I regained (sadly) much of the weight loss. But I think I lost about 8lbs.
I hope your scans and treatment go well this weekend. I have switched my scans to Saturday and this helps a lot – I feel worn out after them (takes 3-4 hours in total) so it kind of ruins Saturday but I guess better than having to go in to work after scans or being expected to continue work (I dont tell too many people I am in for scans) straight after scans. Good luck on Sunday
best wishes Mark
SdmotorcopParticipantI’ve been on targeted therapy since June (Braf/Mek) and have lost about 25 pounds. My oncologist told me to eat more ice cream.. I told my wife the Doctor told me I HAD to eat ice cream. She looked at me, rolled her eyes and walked away laughing.. I would much rather follow my doctors orders.. my alternative is green stuff (brussel sprouts)… yuck
- November 23, 2021 at 6:30 am
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