immunotherapy treatment story: My daughter has stage 4 malignant melanoma, metastatic, (from unknown origin, probably gynaecological) with main large tumours on ovaries and others on breast and neck, small lesion on kidney. Only properly diagnosed in July 24. Treatment so far of one dose of Nivolumab, then two of new combined drug infusion Nivo/ipi She was told nothing immediately life threatening, was not curable but very treatable, may get some side effects with double doses. Plan was for 24 sessions, monthly, 3 month scans. She developed thyroid problems, now treated with thyroxin and is fine on it. Kidney problems caused cancelling of December session. Scan in December, just had brief meeting January with oncologist. He said tumours still showing growth, but no new lesions anywhere, however as they show growth he's stopping treatment and scans etc., sorry, but palliative care only. (she is 46, divorced mother of 3 young children, otherwise healthy) Total shock, meeting was only 5 minutes, didn't offer ANY other alternative, and had previously said he didn't believe in pseudo progression with immunotherapy. Major points: EVERY single scientific paper and medical paper/report says it is very important for doctors to register two things with immunotherapy: it frequently shows tumour progression before growth stops then shrinks, AND it takes up to 6 sessions before scans show stop and/or shrink results. It should be noted by oncologists that stopping too soon is completely wrong with immunotherapy. Her doctor actually says he doesn't believe in pseudo progression (there are no papers saying it's not relevant, only proven facts that it is!) and having got over the shock of being dismissed so abruptly, she is now demanding a new doctor to at the very least go over the facts that she has no new growths, and has only had 2 treatments! She is also, apart from the discomfort of abdominal tumours pressing on bladder and bowel (which is also why he never offered to operate) feeling well in herself - another frequently-noted sign the immunotherapy is very likely working. She has in effect been told to go home, and just wait till it all gets big enough and she dies We are now looking to get an urgent private consultation, to go over scans, treatment etc., so she can make a proper informed decision to demand another consultant - her local hospital is a major teaching one, with excellent facilities. This one doctor is the only complaint she has, her Macmillan nurses are very good. Anyone else been through anything similar, with being told to stop even though treatment hasn't had long enough to work?
Hi PamelaR and a very warm welcome to the group which I hope you'll find is both an informative and supportive place to be.
I haven't had the same experience as your daughter but there are some Stage 4 people in the group and, if any of them have had a similar experience, I'm sure they'll pop on soon.
While you're waiting for replies, it would be great if you could put something about your daughter's 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.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
