Liver metastatis

Hi Surfer boy 

I'm not a member of this group but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I get my first scans this week and it is that "great unknown". All I can say at this point is these figures are always "on average" and with treatment advances, likely to make that a longer time.

Can't stop hoping.

Yes probably best not to get too bogged down with the stats. Good luck with yours. The waiting and lack of control over that is a struggle at times. 

Hi,
are you a member of ocular melanoma? If not join. 
There’s a lot of us on there and there’s so much knowledge and support. 
you can ask any question and you will most likely get your answer. 
there’s people in the group that have had mets to the liver and are still going 6 years on. There’s also a group you can join if you do get mets, and apparently there’s a lot of knowledge on treatments and experiences. 
i would really advise joining. 

Hi Scilly Chick

i have had contact with them previously but opted not to join as I didn’t want to overly focus on my OM at the time and thought it might be depressing. My wife is a member and filters the news so I only get told the chirpier stuff. It kinda works for me. Thanks for advising 

Hi

My UM was treated with a radioactive plaque 8-9 years ago before metastasising to the liver. I am now on my 93rd week of Tebentafusp. This is longer than many I am told. My two mets have been stable most of the time, sometimes decreasing, but a new one was found in the latest scan. I think this was due to unexpectedly low iron levels (I'm close to vegan) and low vitamin D (complete sun protection due to depigmentation). I was taken by surprise by these deficiences as I have 35 blood tests each week before my IV but recently found they didn't include iron or vitamin D tests.

Best wishes

Aluap

Hi, sorry to hear about you mets, but glad the teb is still working. There does seem to be lots more options for treatment now. 
are you saying you think you have gained another spot in your liver from being anemic? I am too vegetarian and I am anemic, currently on iron and due to have a  replete blood test next month. I’ve never heard this can cause mets to the liver. 
i am going to ask this question in our group on ocumel, bit worried now! 

Low effects T-cells and so the treatment.

The action of Tebentafusp is to bring T-cells and gp100 on the mUM together so that the T-cells damage the cancer cells. This is weakened if the T-cells are weakened and, if this is the case, the treatment is less effective at suppressing the cancer. This is a possibility I believe. An alternate possibility is that the treatment is losing its effectiveness as the cancer builds up resistance. I keep both in mind but suspect my deficiencies contributed to my current situation. Time will tell. You can find academic papers on the internet about T-cells. Remember that scans do not pick up all mets, only the larger ones, and that the liver is an immunosuppressive zone.