Immunotherapy treatment

Hi Tran,

Sorry to read your post, sounds like your Mum is in real trouble here. My guess here is that immunotherapy has created a demand for protein that hasn't been answered and the cancer has created a similar demand for calories.

When I went onto immunotherapy (Keytruda) the oncologist told me I would need to eat plenty of protein because I needed to make extra white blood cells to fight off the cancer. That's what immunotherapy does - it uses the immune system to switch on the white blood cells against cancer. People with cancer need to eat a bit more anyway because weight loss is a common symptom.

The Dietary Reference Intake says how much protein is needed normally, but when I looked up the Protein Intake Calculator on bodybuilding.com I found their answer was twice what the DRI said. You should be able to calculate if your Mum's getting enough, but it sounds very much like she isn't. Bottom line: your Mum needs to pig out on high protein foods. Protein supplements for sports are the way to go, otherwise the sheer volume of food will overwhelm appetite.

Hope this is helpful and good luck to your Mum.
kind regards
Steve

Hi Steve, thank you for your reply, it’s getting increasingly difficult to encourage her to eat and drink properly, we all live together and I work from home so fortunately I cook and can keep an eye on her, but she scarcely eats, feels nauseous at times but won’t take the anti sickness tablets, is in pain but doesn’t like taking pain killers, even simple paracetamol.  I’ve been shopping this morning and got some snacks she likes, nuts crisps etc on the basis that something is better than nothing, she has never liked milky drinks, the hospital gave her some drinks to try that add calories but she not over keen as they’re too sweet, even watered down, I’ve also asked her about what favourite dishes and foods so that I can make them for her, but I do know that she also rebels against pressure to do/eat something, even if it’s the best thing for her.  Honestly it’s like she’s fading away in front of me, because in real terms she is.

so sorry for your stressful time looking after your beloved mother.  Do you have a physio because my husband has a physio and has heelped alot to encourage exercise and helps with psychological feelings and appetite wishing it works out well with love and dhugs to you E x

Hi Steve my Husband has been diagnosed with Nsclc in both lungs he is about to start chemotherapy and immunotherapy with keytrude in about 3 weeks Any advice would be greatly appreciated how long is it since you were diagnosed and how are you doing now

Hi SuperLeeds,

I'm happy to report good news on Keytruda. Bottom line: it saved my life.

I went private so my therapy ran for longer than the NHS 2 years, but with hindsight the extra doses didn't shrink the tumour any further (its hard for scans to tell the difference between scar and tumour.) Cancer cells mutate to outwit immunotherapy, so unless they all get zapped early at stage 1 or 2 there's a danger of stray cancer cells having the time needed to mutate: that's what happened to me but by then my new tumour was judged stage 1 and I got a lobectomy 5 years after my first diagnosis. I'm currently 2 years cancer-free.

It's hard to tell if immunotherapy "trains" the immune system permanently. I am aware of continued side effects, though, so I assume that I'm still getting the good effects too. As for dealing with side effects everyone gets different ones in different amounts - its a random lucky dip. Merck's website lists a scary amount of them but that's just to cover themselves from getting sued. If you do get any remember that you shouldn't treat the symptom; instead you should figure out what is triggering your immune system and remove that instead.

kind regards
Steve

Hi, thank you for your kind words, mum had the 1st immunotherapy and was very poorly about 10 days after, she’s just come out of hospital ( yesterday) after being in 11 days, they got her to a level where she could have the second immunotherapy which was administered on Monday but she’s not great again, hardly eating or drinking, let’s see what the next few weeks bring, she had physio at hospital but there’s nothing been put in place for home.