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Palpable Tumor(s)

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Palpable Tumor(s)

Posted By
TimCT
3/6/2020 12:53pm
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Replies: 9

Hi All,

Anyone else here have a palpable tumor(s)? I'm stage 4, though its all in my lymph nodes - the left side of my neck, in my left armpit and two axillary nodes on my right side. Both areas on the left side have been pretty swollen since January, which led to my eventual diagnosis.

Had my first infusion of ipi/nivo on 2/27, and by Wednesday afternoon of this week, I could swear that the lump on my neck is smaller. I haven't had much in the way of side effects yet, just some fatigue and low grade fevers.

Anyone else here have disease you can feel? What has been your experience with it changing size once starting treatment? I'm trying not to obsess over it but its hard not to keep feeling it and looking for signs of a response to the meds, short of having more scans. Curious if anyone else here has dealt with this too. Thanks!

Tim

Lucas - (3/6/2020 - 3:29pm)

I had very palpable painful inguinal lymph nodes that were about the size of a baseball. I also had many cancerous lymph nodes that couldn't be felt. Two weeks after the first dose I could feel it shrinking and being less painful. By the third dose I was out of bed and back to living normal life. I had gone back to work by the 4th dose and felt great. The Inguinal nodes had disappeared and the next scan would show almost all disease had resolved. One year later scans are still good!

MelMel - (3/6/2020 - 4:08pm)

In just two months, my tumors reduced by 50%. Usually, the side effects don't become really apparent until 3 weeks following 1 st combo infusion. The tumors, including numerous lymph nodes continued to decrease another 30 % in the following two months, even though I only received two infusions and had to be taken off immunotherapy. Hope this helps.
Good luck,
Melanie

TimCT - (3/6/2020 - 5:30pm)

Great news, thanks guys! The lymph nodes on my neck started killing me the day of the infusion and I was cautiously optimistic that what I was feeling was an immune response, and even more cautiously optimistic that this mass was indeed shrinking and it wasn't a figment of my imagination. It hasn't ached since the weekend, so maybe this is all adding up to be good news!

lkb - (3/8/2020 - 11:15pm)

In January 2019. I had two palpable lesions on my scalp, one palpable lump in a lymph node on my neck, and one deeper, not-palpable lump near the other in my neck. About four months after I started the trial of intralesional shots of IL-12 plus electroporation + pembro infusions, the two (smaller) scalp lesions resolved. About 10 months in, the deeper lump in my neck resolved. I still have the one palpable lump. It has shrunk but little; however, the metabolic activity is jaggedly decreasing, I was touching it several times a day at one point, and that increased my anxiety. My therapist suggested I touch once a day at the same time and then leave it alone. It's a good plan; I don't always stick to it, but I feel for it less often and am less anxious. Good wishes to you!

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

TimCT - (3/9/2020 - 9:36am)

I try to (not) do that too! When I first felt it getting smaller I would touch it 3 times an hour to try and detect any movement. Is it still getting smaller? Wait, is it getting bigger again? I'm confident now that it is indeed getting smaller (less noticeable to other people, I can't feel it when I swallow anymore, and it seems more 'well defined' as though there is less matting between the nodes) so I've backed off feeling up my own neck so much.

jennifer83 - (3/9/2020 - 8:22am)

Hi Tim - Yes! I had MANY palpable tumors. I'm also stage 4 with mets in liver and lungs, but I had plenty of lumps and bumps all over my body. I did notice them shrinking very soon after I started ipi/nivo. I had a huge one on my neck that was completely gone before I had my third infusion. Scans show that all my tumors are shrinking! Wishing you the best!

Jennifer

Primary 1B in 2014 - WLE and SNB negative.
Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

TimCT - (3/9/2020 - 9:38am)

Great news Jennifer! I hope we're in the same boat with shrinking tumors!

snoe - (4/4/2020 - 1:32pm)

I too am stage 4 with palpable tumors — one on my chest and one on my back. Both began shrinking within a week of my first ipi/nivo treatment. It’s quite dramatic.

I consulted a radiation doctor for tumors in my brain, and he said the shrinkage in palpable tumors is a) a good thing because it means tumors are shrinking (duh) and b) nice because it provides a concrete sign of the drugs’ effectiveness between scans. So maybe look at it that way?

TimCT - (4/6/2020 - 12:20pm)

Thanks snoe! I had (what felt like) one large mass, and after the first treatment the whole thing started to shrink, which made me very happy. About a week after my second treatment, a couple areas of the smaller mass started to swell, which was dismaying to me. In the weeks since, they've stopped swelling, and I think I can feel the area being more 'well defined', as in, the disease had caused the nodes to mat together and become this large mass, and now that the disease seems to be receding, I can start to feel individual swollen lymph nodes again - I've taken this to mean that the swelling is another immune response and the disease is leaving the tissue surrounding the lymph nodes and I'm headed in the right direction!