Husband about to start immunotherapy - side effects experience please

Hi and welcome to the Group. 

I'm also Stage 4, but thankfully in remission following immunotherapy treatment. 

You're quite right that the list of side effects is daunting, however please be assured that not everyone suffers from them.

Personally I had very few day to day issues (I did have adrenal gland failure but that is sorted out by a couple of small tablets each day).

My advice - start the combination therapy and see how things go. Be vigilant for side effects, but don't be fearful of them.

All the best and good luck for the future. 

Thank you for your response, I really appreciate getting some positive feedback.

It’s good to hear a success story and to know not everyone reacts badly to the treatment, it’s difficult to think positively at times.

fingers crossed you remain in remission, thanks again.

Hi SMWB,

I am also stage 4 with tumours in my lung, both adrenal glands and small bowel. My first immunotherapy was mid March - I’m on Pembrolizumab -  in a 3-weekly cycle.

My most noticeable side effect is the fatigue plus some mild itching. The fatigue was there to start with, probably the only symptom I had that anything was wrong. It’s definitely more pronounced in treatment week along with feeling like I’m about to come down with flu. Managing my energy levels by having a daily quiet/rest time helps. I try not to sleep during the day as this affects my nighttime sleeping but a sit or lie down (in the sun if possible) not doing anything seems to recharge the batteries well. I’ve had to accept that there’s things I can’t do as well as I used to however I have not stopped being active. The skin itchiness is manageable with regular moisturiser - one without fragrance is best - and having cooler showers so my skin doesn’t get so dry. 

Eating well and cutting out sugar and alcohol has helped with the fatigue and increased my feeling of general well-being, plus supports my sense of agency -that I’m not just a helpless cog in the medical machine.

I totally empathise with your feeling of being ill prepared. A few years ago my husband had prostate cancer. As someone who has been on both sides, I’d say please take care of yourself too - being the other half of a diagnosis like this can be as stressful as being the patient.

Lastly, I would echo Emo, be vigilant on the side effects as your treatment team need to know if anything changes, but try not to get too stressed about side effects as they may not happen.

All the best and good luck for the treatment.

Really Immunotherapy is magic…. It combines with you own immune system to kill the cancer… the really positive idea is to avoid processed food….anything with more than six ingredients listed is processed… if you possibly can fresh vegetables, grains, nuts, avoid diary… it’s the M.Jagger diet and he is doing ok …

processed meats… crisps… a big no thank you ….

i am thru a year of Prembrolizumab… and it’s working yippie…

If you possibly can, keep fit … and do things you love …. X