My Brother has been told his treatment is being stopped because after four cycles of combined and six singular cycles of treatment the drugs are atttacking his liver too much. The last last two cycles were interrupted by high liver counts which resulted in Steroids having to be taken. The immunotherapy worked very well on his multiple tumours on skin , pancreas, adrenal gland, liver ,etc shrinking them all. Once it had kicked in he went from being very unwell to being pretty " normal " with a few bumps in the road along the way. His doctor now says we just have to see what happens because they don't know themselves how things will go.The immunotherapy will still be in his system but as this will wear off , what are the chances of it growing again ? Is there things i need to look out for. He has blood tests and a scan scheduled to keep an eye on him. Any advice or info on what lies ahead is greatly appreciated having learned previously that Google is not your friend in these situations.Trying not to worry about the No treatment scenario.
Hello , I’m sorry to hear your brother has had to stop treatment because of the side effect on his liver. Reading here and in your profile I get the impression that the Immunotherapy worked very well though. I found that encouraging as your brother had all 4 ipilumamab doses and prior to the introduction of Nivo that was all some people had, and for that was all she needed to become clear. I have met other patients who had the single treatment ipilumamab and although not clear remain stable and it gave me some hope when I was starting my treatment (I am currently on my 34th dose on Pembrolizumab and have no measurable disease).
There have also been patients on here who have stopped treatment and then gone quiet, and those who’s other halves have moved over to the supporting someone with incurable cancer group, to get the support of others who are going through a deterioration of their loved ones and wanting to make the best of the time they have left together.
I suppose in one way or another whatever stage us patients are at, we and our close family and friends have to cope with uncertainty. The blood tests and scans give us hope until they tell us otherwise, for me the scans have picked up a change before I have felt any different, although like your brother I think I felt ill before my diagnosis and felt better quiet quickly when treatment started. I can’t help with what to look out for as my spread was to my ovary and I imagine each place it gets into is unique. I have however put a link in to the support and information pages on Mac,Ilan about end of life as I thought that might be what you were edging towards asking. I have also put the link in for two discussion groups for relatives, you might not be ready for the second group though.
https://community.macmillan.org.uk/cancer_experiences/being_a_relative_/discussions
https://community.macmillan.org.uk/cancer_experiences/nearing_the_end/discussions
I have also put in a link to talking about cancer, as it’s a hard thing to get right, (my cousin passed away in May after a diagnosis of advanced bowel cancer and I had to be guided by her as to how serious she felt her situation was and if she wanted to talk about it or if she wanted a distraction) I hope you don’t mind me including this.
I’m hoping others will join in here to help you with their personal experience and you could give any more thoughts that might helps us with what info your looking for. As you said the drs don’t know what will happen yet, and it’s hard to get your head around that sometimes. We just all hope for the best and sometimes plan for the worst.
Best wishes
Take care KT
Hi bowman
I had Ipi on its own before the combination was available I had the recommended dose, which was 4 doses at three-week internals. It worked for me, within 6 months I was NED (no evidence of disease). It did take 6 months for my tumours to shrink until they were undetectable.
I have been NED for three and a half years how. There are some people who had just Ipi who have been NED for over ten years.
First I had three-monthly scans, then six-monthly scans and now I am n yearly scans.
I hope your brother continues to respond, as I did.
All the best
Thanks KT and Moira for taking the time to reply to my post. Although i have been very wary of posting about my brother's Melanoma for fearing i would make people just diagnosed worry more , i have spent a lot of time on here trying to get answers to all the questions melanoma brings. Its people like yourselves and Latchbrook who make things a little less scary and worrying so keep up the good work.
as for my Brother, i was going with the usual half glass full attitude of prepare for the worst and hope for the best.So in preparing for the worst and remembering how fast things went downhill after his mole was removed i was hoping for info on what may happen if the Nodular Melanoma kicks in again. , My brother has very poor eyesight and hearing and kinda lives in his own wee world so i need to keep a careful eye on what going on. If we are in unchartered water as the doctors say ,i'll just need to crack on and deal with it. Thanks for the links KT . Very useful .
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