Hopefully some of our members who have had this as part of their treatment will share their experiences with you soon Carol, but you also can find out more about immunotherapy just here.
I hope this helps but if you'd like to speak with one of our cancer nurses they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m
i have just currently finished my cycle of immunotherapy anc it has not been pleasant for me (sorry )
I have had terrible side effects
Pain , diarrhoea, insomnia, sore skin , sore blistered mouth . It turned out I needed a dose reduction which helped reduce side effects but didn't stop them
everyone is different abd I know others having treatment at the sane clinic sailed through
I'm just unlucky I guess but I am currently working through my last lot of symptoms as has my last cycle
Hi Michelle, thank you for replying to my post, my husband has had diarrhoea, headaches and a pain in his side, where the liver is situated. He will have his 3rd session of Immunotherapy in January plus a CT scan to see if the treatment has been successful so far. They did say to contact them if there are any side effects, including diarrhoea, but he's reluctant to do so in case they stop the treatment. His treatment may be ongoing for 2 years. He has lung cancer which developed due to a melanoma skin cancer which metastised and spread and he is now stage 4 with the cancer. So the treatment is important to him, he also gets tired a lot with low energy levels. Keep me posted about your experiences and how you are coping emotionally with this. My husband gets very low in mood at times and always expects the worst outcome, ie., with the pain in his side, he's convinced the cancer is attacking his liver etc....
i can understand his reasons to not want treatment to stop but the side effects can take a toll
Yes I understand low moods I have felt very low and sorry for myself at times then I get angry and have more fighting spirit
Definitely a rollercoaster just make sure you take care of you too as I know that not intentional us patients can be nit so nice to our other halves and can forgot how you may be feeling too
The side effects are not pleasant but I've found they can be reduced. The trick is not to just accept them.
Diarrhoea: experiment with changing your diet. Take one food/drink item out for a couple of days or so and note any changes. Then move on to another item. Keep going until you settle on food your gut copes best with. Increase liquid intake to offset what you're passing out. (While I'm on diet, increase your protein intake, you'll need to be making white blood cells a-plenty.)
Itchy skin: exfoliate. Moisturising helps a bit but I use a non-scratch washing up scrubber when I'm in the shower. That made a huge difference for me. Not such a problem in very hot weather when I'm self-moisturising.
Painful joints: glucosamine sulphate 1400mg, one a day (from Boots). That helped a bit, but not a lot. Ibuprofen helps too, it's anti-inflammatory (do not take on an empty stomach) I take 200mg before bed to help me sleep.
Fatigue: exercise. Bit of a Catch-22 this, how to raise energy when you're too wiped out to do anything. Start off slow and easy, don't rush but persist in gradually increasing the workload. Any type of exercise seems to work fine, aerobic or anaerobic. Also helps boost the effectiveness of the immune system response.
I was diagnosed stage 4 lung cancer, big primary tumour in the lung and a secondary tumour in the brain. Had brain surgery and was put on Pembrolizumab. Still alive, not planning on going anytime soon.
Thank you Steve, I will certainly try those suggestions out. Have you had any weakness, as a side-effect, as my husband has been feeling really weak, which is presenting as a new symptom, the diarrhoea has stopped for now but he now finds himself constipated. And his feet can be very painful at times and difficult to walk on.
"Weakness" as a side effect, that's a difficult one but the short answer is "yes". My preferred exercise is weight training, so I know exactly how strong I am and after 40+ years training I know how strong I would be right now if it weren't for the cancer.
What I do know it that after a long lay-off from chest work (bad bursitis in the shoulder, for which I blame immunotherapy) what is now my base level of chest muscle strength is way below what it should be or even normal. Also, while my legs are not far below best levels of strength they haven't had a lay off and they certainly haven't made the kind of gains I would have otherwise expected. I'm still making gains but they are small and coming VERY slow. From an exercise point of view it feels like I'm suddenly 25 years older.
Thank you for your question. My husband is being treated for Stage 4 bladder cancer that has metastasized to the lungs and lymph nodes. It's been very difficult to find out how immunotherapy affects individuals so i hope sharing might help. He's receiving pembrolizumab and is tolerating it very well on the whole, but his mental state at time has been difficult to deal with - obsessive thoughts in the main. Initially, some constipation (Laxido) difficulty sleeping, pain, achey hips that moved to the thighs and caused mobility problems. Occasional itchy skin (E45 works) and fatigue are the main symptoms associated with the pembro, but, he is having problems with his balance. He also had 'heavy feet' and was seriously anxious about falling over so wouldn't go out alone. He has had kidney stents inserted: the medics suggest that most of hs symptoms are to do with the stents or with his psychological state (he's seen a lovely psychiatrist who was very reassuring and said his fears were perfectly normal).
Anyway, hang on in there. After a year's treatment, his tumour is half the size it was and is officially 'asleep', and the metastases have been resolved. This is a brilliant response and the change in him physically and mentally is worth it. He's not quite fully restored (stents still a pain) but is living a good life again.
I'm aware that not everyone has such a dramatic response but hope the medics learn and improve the medicine for everyone.
A brief update to encourage others (I hope): after treatment for 18 months or so, my husband, who was given three months to live with metastatic bladder cancer, has been told he is now cancer-free. This is totally unexpected, and only happens in a small percentage of cases, but it's a rare good news story. So hugely grateful fo rthe NHS and the cancer research that has made this possible.
