immunotherapy damaging kidneys

[SharonTan]

hi My mother has been having successful treatment for stage 3 lung cancer, but the immunotherapy has negatively affected her kidneys, so she is having steroids and they have said they cannot continue to offer the immunotherapy. We are awaiting a scan appointment & they may then discuss radiotherapy, wondered if anyone has had a similar experience? As my Mum is 80 I know she would not take chemo, but wondered what the side affects may be like if she is offered radiotherapy? Love to hear from you!

[Elt79]

So sorry immunotherapy has had this side effect for your mum. I had immunotherapy but didn’t have such severe side effects - the immunotherapy did shrink my tumour to the extent I was offered radiotherapy as well. I was fortunate that the radiotherapy which I had further shrunk my tumour - I had 5 days and my main side effect was tiredness for some weeks after. I hope your mum is able to go ahead and that it helps her x

[SharonTan in reply to Elt79]

Thank you & thanks for responding. I hope you are doing ok x

[Cosmic54]

sorry to hear about your mum … I had radiotherapy to shrink the stage 4 tumour which made me throw up and had bad heartburn after a break I started immunotherapy which has been great, side effects are tiredness constipation I now have 3 more sessions left ending in January that would be 35 sessions . Radiotherapy was painless which I had weekly for 12 weeks but the side effects were very uncomfortable compared to immunotherapy.. I so hope your mum gets sorted .

[SharonTan in reply to Cosmic54]

Thanks so much for responding, it’s so appreciated & I hope you are doing ok x

[Gentlelady]

Hi, I had the same my kidneys only work at 25% due ti immunotherapy. I had steroids which didn't improve them , however after after 8 months I was tested (via blood) for exon markers and found to have them. I started with Afatinib via tablet which is much kidner than chemo which had kept my cancer with no progression for 12 months. I hope this helps xxx

[SharonTan]

thank you so much for your response it’s much appreciated & I hope you are doing ok xx

[Alisondee]

I had to stop immunotherapy as it affected by bowel, I had colitis

[SharonTan in reply to Alisondee]

Sorry to hear that

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello SharonTan,

I am sorry to hear that your mother can no longer have immunotherapy treatment. As you can see from other responses there can be other options available including radiotherapy. Below I have added our booklet on radiotherapy which has great information on what you can expect from treatment and side effects that are likely.

roycastle.org/app/uploads/2...

I hope some of this is helpful, but if there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

Wishing you all the best

Roy Castle Support Team

[SharonTan in reply to RoyCastleHelpline]

thank you!

[toffeepudding]

My husband had immunotherapy for mesothelioma. It is certainly keeping this incurable cancer at bay but knocked out the insulin producing cells in his pancreas so he now has Type 1 diabetes and will be insulin dependant for the rest of his life. However, he is continuing with the immunotherapy and fingers crossed he doesn't suffer from further adverse reactions. Immunotherapy certainly comes with issues. I have read research that states that 46% suffer an adverse reaction of Grade 3 (severe) or above. I do think that the consent process could be more transparent about the risks which it certainly wasn't in my husband's case. Even with the diabetes he would have gone ahead given the poor prognosis for mesothelioma, but he would have liked the opportunity to have made more of an informed decision.

[SharonTan in reply to toffeepudding]

Thanks for replying appreciated

[Ceibach]

Hi my husband seems to have been given lots of treatments....stage 4 nscl.diagnosed jan22 ...First triple chemo Feb 22 x4....immunotherapy for 10 months plus a blind trial.....the results were very rare and promising...he had upperleft lobe removed by open surgery as the VATs didn't go to plan......He completedc25 fractions of radiotherapy 8th September this year.....the side effects of radiotherapy have knocked him around but are improving daily.....He has full contrast scan on Thursday........results at end of month.....Don't give up ...I can not believe that he is still with me and we enjoy more days weekends away.....everyday is a bonus ....sending cyber hug. .....and hope you have happy days too .........

[SharonTan in reply to Ceibach]

Thank you! So pleased for you & your husband x