peoples thoughts on post op immunotherapy treatment

Hi Richard001 and a very warm welcome to the Macmillan Community but sorry to hear about your journey to date. 

I know from experience having been on my cancer journey for over 25 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..

     Kidney cancer

…….. support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

Do get back to me if you need further help navigating the community and all the best regardless the direction you take. 

Hello Richard001,

I know from experience how difficult these decisions can be.

I was diagnosed with lung cancer in 2014 and had surgery to remove my right lung. Immunotherapy was not available then, but after surgery I was offered chemotherapy which was said to add about 5% to 5 year survival chances at the time of around 60% if I recall correctly. Chemo came with its own risks similar to immunotherapy.

I was 56 at the time, had lost a few friends to the same disease and my father-in-law just before my diagnosis and I took the view that if I didn't take the opportunity and the cancer recurred in a year or two I would be devastated. I also considered that, should side effects be so bad as treatment progressed, I could stop at any time I chose. However I made it through to celebrate 11.5 years survival so far.

I don't know the expected survival rate for your cancer is to weigh against the potential benefit of immunotherapy and this will obviousy be relevant in your decision. Whatever it is I wish you all the best for a successful long lasting outcome.

Derek.

Hi Richard 

Hope you are well?

I am in the exact position as yourself 

Kidney removal, same drug,same decision by next week 

I have some underlining health  issues already

I have asked a lot of close people to me and of course the doctors and nurses and all have said go for the course but like you I am so confused by the side effects and benefits 

Is it worth it?

I feel like hiding under a stone and not coming out

Crazy, confused, unsure and in a terrible phase in  my life, I am 63 old male, married with children 

I sometimes wish I could just disappear to an island somewhere and forget about it 

Sorry to be down on your reply 

Hi Yin, thanks for sharing your situation, like you day its so difficult to make a decision which will potentially give you other additional problems.

I hope you can arrive at a decision and be happy with it.

Richard 

Thank you

And I hope you make the right choice

Good luck Sir

Hi, just wanted to say, in regards to immunotherapy. I’m 73yrs old and when it was said to me about immunotherapy I was petrified. My Daughter and I went to an appointment in regards to it and there was a whole load of things that might happen to you with including death. We sat there and then we both started laughing. Hey ho what the hell!!

however having been through so much before this and realising how unpredictable life is we thought, bring it on. You always are told the worst outcome.  I would like to encourage you. I’ve just finished 15months of immunotherapy and fortunate or not, I’m fine. I have had a rash but it is fading now I’ve stopped. I did have a bit of nausea but it was dealt with. Fatigue is always an issue but in the big picture it’s nothing.
I would say to anyone offered it, you must obviously make your own decision but I’m okay. I also have a friend who accepted it and although her cancer is now controlled, not cured, she’s doing really well. Hope this helps.

Ho Pandora, thank you so much for your feed back. It sounds like you have had such more of a journey/ battle with cancer where as mine is possibly still to come. 

I am a Christian and have a strong belief and I think I'm going to decline the immunotherapy at this stage and put my health in God's hands. 

Hope you continue to have good experiences with your treatment.

Richard.

Hi, I am a practicing Christian also. I have seen many people of faith say what you have said and my experience of the outcome was not good. I j just would like to say that I believe that whatever we believe in. The something we call God also works through us and guides everything. It guides in ways we are unable to imagine. As such it works through Docters and good nurses, scientists and the man and women next door, the shopkeepers down the road. What is much more than just us recides within and without. It’s creative and beautiful and intelligent. It’s only our ignorance and dim mirror images of who and what we are and what God is that’s the problem. I hope I’m not speaking out of turn. I’m sure you will go with your heart. I’ve seen the unexplained happen but I’ve also seen the other side. I wish you all good blessings.

Hi Richard 

Hope you are well?

I too today rejected pembro and have decided to wait and see approach,my reason being i have many underlying health issues ie.heart disease,kidney disease, thyroid problems and diabetes type 2 which pembro can effect all if not some organs 

My consultant said its a hard choice but if he was in my shoes he would choose wait and see

I was thinking that all along for past few weeks and also I did not want to be a burden on my family to be honest if things went wrong which is about a 30% chance  for the benefit of 10% improvement 

I hope in God's name I have made the right choice but I listened to my heart 

I can't predict the future but I only know after many discussions that this is right for me 

Wish you well and keep in touch

Regards 

Hi Yin, thanks for sharing your decision. I feel happy in my thoughts at this stage in my life and I'm puting my cancer journey in God's hands. 

Yep keep in touch and I will pray for your continuing health (together with mine)

Richard.