Stopping Palliative Chemo - Follow up care

Hi Doris26 

I'm sorry to read that your husband is struggling with the chemo and it's natural to wonder what will happen if he decides to stop treatment.

Although I'm not a member of this group, I 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 husband's diagnosis and treatment 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

Hi Doris26 

My mum had a few hospital admissions as the disease progressed and had scans and blood tests that way but as soon as active treatment stopped she was discharged from oncology right away after 15 years it was such a change .

My advice would be to chat to his oncologist and have firm plans for palliative care , what that means in real terms and how it’s followed up . My mum had a great GP but it was over to him completely and no palliative care whatsoever. 
She was maybe unfortunate and if I was doing it again I would want contact names and numbers with a full understanding of what they do or don’t do .

I wish you both the best .

Court 

Hi Doris26, 

I am sorry to read about your husband and I don’t know the answer to your question but would also be interested in knowing.

My husband has had an awful time of late on his third line of treatment of Lonsurf and Avastin, after it initially being a breeze after the other lines. However, he has never had consistent cycles due to low white blood cells which have now been remedied by injections, and he is now having an awful lot of side affects coupled with having lost half a stone in weight in two weeks. 

Consequently, my husband’s consultant will be looking at reducing the strength of the Lonsurf. I wonder if a reduction in strength is something your husband may consider? I will let you know in a few weeks what difference if any this makes.

Take care x

Thank you so much. Im sorry to hear your mum didn't receive the full care she should have. Our consultant has asked our GP to put him on the palliative register and the mcmillan nurse and district nurses come out regularly. I'm really concerned about getting regular blood tests done as he's now in hospital having transfusions for low HB as a result of the regular tests the oncologist team do. I think I'd best speak to the cmillan nurse when she's next out. Xx

Hi, thank you. I hope the reduction has a positive outcome for you both. I'll ask about a reduction when we have the next appt in November, it may be a good compromise. You too take care. Xx