- May 23, 2021 at 12:42 pm
I’ve googled way too much and can’t tell you exactly where I read it. I think I’m letting my nerves get the best of me as I found out I have lesions on my liver and spleen. Possibly going from stage 3 to 4 after 5 years of NED. That’s why I’m bringing the question here because I know you all have lots of good information to share, particularly you and Celeste. I know a lot of things on the internet are not from reliable sources but I keep going back to it (I know, I need to stop lol).
- May 23, 2021 at 1:03 pm
There is some research (old and new-ish) that addresses immunotherapy and liver mets. Here is one report with a link to an older post within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/03/clinical-condition-of-melanoma-peeps.html
- I have known folks with liver mets who do very well!
- Some folks with liver mets have added radiation of the liver lesion to their immunotherapy and do well.
- In the 2019 report – I think the key point is something we’ve long known – immunotherapy works best with the lowest tumor burden. In my humble opinion, the data in this report is muddled with that. Unfortunately, most folks who discover they have a liver met do so at the same time that they discover they have a large tumor burden in the liver and elsewhere. So, I think that affects this data.
- Finally, despite the fact that melanoma in the liver and everywhere else sucks great big stinky green wizard balls – it is still a beatable scenario!!!!!!!!!!!!!!!!!!!
Hang in there. Hope that helps. c
- May 23, 2021 at 1:06 pm
Also fudging up the 2019 report data is that fact that n = only 57 melanoma peeps were given the ipi/nivo combo. 303 were given anti-PD-1 as a single agent and we KNOW that the combo is more effective than anti-PD-1 alone!!! You really have to read the fine print with this stuff.
- May 23, 2021 at 8:50 pm
I am sorry for your bad news (although you still need to do the biopsies to confirm, so there still is a chance – although for me years ago my biopsies turned out bad 👎)
It’s great that you have Ed and Celeste replying to you, our best experts
I would not google too much but just read what they have written. And make sure your oncologist is a melanoma specialist – in which case the advice they give should be similar to what Ed, Celeste and others suggest.
For you the good news is that you have not tried any treatments – only interferon which Celeste hates and is not any good, that was the old standard of care and probably it was no good. So you have immunotherapy to try, targeted therapy if you have BRAF, TVEC + immunotherapy which really helped me, and then there are new studies like the LAG-3 stuff just coming out. So you have loads of options plus radiation + immunotherapy. Then TILs etc etc. Many many more than six years ago. And my guess is that you have a low tumour burden if you have caught it early.
So I would make sure you are in a good facility, have a melanoma specialist, agree on a course of treatment, maybe take it to a second opinion too (may give you new ideas or reasure you that the plan makes sense; hearing it a second time for me was much easier to understand).
Am sorry you have had terrible luck; while the bulletin board has become quieter in recent months, there are many useful older posts and the treatment options are far far more than six years ago. It means that the survival statistics are much better too than reported.
I really wish you well, and I know many here more expert than me will try to help you through this
- May 24, 2021 at 1:48 am
Thank you for your support. The lesions (liver and spleen) were seen on an abdominal ultrasound which was done because of abdominal pain and nausea. I also had an elevated white count, platelet and LDH. Luckily the symptoms are subsiding. Liver function tests are normal. Saw my Oncologist, who is a melanoma specialist and recommended a pet/ct scan which is scheduled for tomorrow. He thinks it is likely I have a reoccurrence but of course can’t be certain without further testing. I’m holding on to hope at this point.
You’ve all been so helpful with sharing your knowledge and personal history. I can’t thank you enough.
- May 24, 2021 at 7:50 pm
i am no expert…Ed and Bubbles and all of the others here really know their stuff. I just wanted to let you know that over 5 years ago, I had melanoma all over…liver, spleen, bones, lungs, etc. My oncologist put me on Tafinlar and Mekenist (BRAF +) and those tumors just melted away! It was amazing!
God bless you and I wish you much success with whatever treatment you choose!
- May 24, 2021 at 9:10 pm
I was diagnosed March 1 2020 after 5 misdiagnoses. I had a lump pop up on my neck, and during surgery at MDA, it was determined I had melanoma of the Parotid gland. No skin cancer ever. So I am a Non Primary, and non V600. Anyway, fast forward to today one year later, I have had surgery, and 2 weeks after 30 grey of radiation, It was determined melanoma had spread to 5 nodes of my neck. Started NIVO immunotherapy and after 3 months, scans showed 5 nodes in my neck were clean but I gained 5 Non Active nodes in my lungs, and a 5CM Active tumor in my liver. Started IPI/NIVO and after the third infusion, developed colitis, dermatitis , arthritis, hypothyroidism and other things. Scans were ran in November of 2020 and I was told I had Stable disease. The 3 infusions basically almost killed me, but I was determined to finish the fourth dose, so in mid January of this year I did. WHEW. So I was rescanned a couple days ago and the oncologist explained, the following:
Neck is clear, Brain is clear, Liver tumor is completely clear ( Prays GOD ) but the nodes in my lungs have grown too 6MM. The doctor was highly surprised but confused about my lungs. Tests were ran and it was determined I have severe inflammation from arthritis, DUH, I can’t even dress myself due to the pain.
So in my case my liver tumor completely went away. Keep positive and fight the good fight
Love and Angel Hugs,
- May 25, 2021 at 9:39 am
I was DX’d in May of 2016, stage 1b. By Dec. of 2017 a PET scan showed mets (about 10) in my liver. I was put on Opdivo only (due to pre-existing colitis) in January of 2018. I did 2 infusions a month for 3 months before my next PET. In April of 2018 I had the PET which showed all mets in the liver were gone! So, the Opdivo not only worked, it worked with amazing speed! I finished about 2 1/2 years of Opdivo only (with one occurrence of a met in my small bowel, which was removed surgically, during the treatment). I have been done with treatment since May of 2020 and have had clear PETs ever since.
So there is hope that these immunotherapies will work on the liver. Remember, we are all different and respond differently to treatment. Just because you read it on the internet, doesn’t mean that will be your outcome. Stay positive and keep on fighting!
Best of luck.
- May 25, 2021 at 4:35 pm
I am not nearly as educated as the many experts on this forum (they are total rockstars) but I still want to share my story with you, even though it is not exactly a testimonial or proof that immunotherapy does work for liver mets. I was diagnosed in April 2020 with supposed mets on my liver and bones. My oncologist started me on Opdivo only to start because he believed in my case it was a good beginning point. Fortunately for me, a liver MRI and a subsequent biopsy determined my liver “met” was actually benign (praise). I am, however, sharing because my oncologist was confident enough in the immunotherapy path to treat me with the thought I did have a liver met. I see where others have more evidence to support this so I hope this helps to substantiate this somehow.
Best wishes and positive thoughts your PET scan will yield good results! Take care!
- May 25, 2021 at 9:40 pm
I had 12 tumors in my liver and after three combo infusions, they nearly disappeared. I also had inch-long tumors in both lungs which are now gone. I am pretty sure this is a high-tumor burden. I agree with what Bubbles said: ” In my humble opinion, the data in this report is muddled with that.” My latest scans in April showed nothing visible.
I only got through three infusions before my ALT went up to 748. Finally, after 6 months of high-dose steroids and MMF/ Cellphet, the doctor allowed me to start the single infusions of Opdivo. I have just completed 12 infusions as of yesterday. In fact, yesterday was my first double dosage of 480mg. My ALT is 27 and I have not felt any side effects yet but am aware they may come anytime.
- May 25, 2021 at 10:29 pm
Thank you for sharing. Reading these posts are the only thing keeping me going at this point. The ultrasound report showed multiple liver and spleen lesions. Waiting for the pet scan result to confirm metastasis and see if any lesions anywhere else. I’m terrified of how many other places it could possibly be but reading stories like yours is keeping my hope alive. Congratulations on your success. That’s amazing.
A giant thank you to everyone who has responded! It truly means the world to me. For those of you who were symptomatic (abdominal pain, nausea, loss of appetite etc) before starting immunotherapy, did you find improvement of the symptoms after starting the immunotherapy?
- May 25, 2021 at 10:39 pm
Most definitely! I was deathly ill for 5 months prior to my diagnosis. Severe nausea, migranes and I actually felt like I did not care about anything just was in a daze and could nap in and out of consciousness 24/7. I had no desire nor felt the need to eat nor drink. I was actually afraid to and due to severe nausea, it just took all the energy out of me. My family insisted I start Gerson Diet even though I had no diagnosis. The change was immediate and immunotherapy just helped. My liver tumors as well as lung and interthorasic lymph nodes all reduced by 50% within 2 months and another 33%within the next 2 months. I never once felt any nauseousness while on immunotherapy while I had other symptoms.
- May 26, 2021 at 4:10 pm
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