Side effects

[Red58]

Has anyone had side effects with immunotherapy

[Tike3]

Hi Red

How are you?

When I was first diagnosed I had immunotherapy but it wasn't effective, so was started on a course of chemo, 4 in all.

Only managed the first two, because the immunotherapy I had the September before gave me ulcerative colitis. Apparently it's a rare side effect, believe me it was horrendous. I ended up in Christie's, severely dehydrated and on drips and medication, I was hallucinationing too! But I'm fine now and hoping to have my last 2 chemotherapy sessions. I was told that because I have IBS and diverticulitis I was at risk of this happening, I must stress to you it's very rare. Don't want you worrying.

[Red58 in reply to Tike3]

Thanks tike I was on immunotherapy and chemo they stop both for 4wks due to kidney prob they put me on steroids for four weeks which was horrendous side effects one consultant say kidney issue due chemo other consultant say immuno cause it. They resume immunotherapy on Thursday I feel not to good very tierd n nausea didn’t have before. But could be steriods still in my system finish them 2 wks ago x

[Tike3 in reply to Red58]

All the side effects there must be when you think how many different chemotherapy and immunotherapy drugs there are. We're taking risks really but we have to don't we. As for steroids I feel really ill like you, they've dropped me gradually from 12 a day to 3, because they have to lower the dose for chemotherapy starting. I just sleep all day at the minute.

Hope all ok with immunotherapy on Thursday, how many sessions do you have?

Be nice to keep in touch.

[Red58 in reply to Tike3]

I have been on chemo and immunotherapy for a year after month steriods they stop chemo I got immuno on Thursday feel horrible if bloods in 3 wks show kidney creating has gon up they also stop immuno yes Pam I’m same stage as you x

[Tike3 in reply to Red58]

Hi Red

Hope you'll feel ok after chemo and immunotherapy, think I was mostly tired and of course the sickness which they give anti sickness for. Hope next sessions go ahead and kidneys are stable. It's so frustrating when something delays treatment like my colitis delaying my chemotherapy. Hopefully have last two in a couple of weeks.

Best wishes

Pam

[Tike3]

I'm Pam by the way not Tike3! Got a few depressing messages so changed my forum name. We've chatted a lot Margaret xx

[Red58 in reply to Tike3]

Hi Pam how are you x

[Tike3 in reply to Red58]

I'm ok thanks, good day's and bad. This struggling to walk gets me down. Consultant thinks it's the vertebrae causing spinal compression, don't know if they'll do anything about it but I can't go on like this.

Do you have same stage as me Red, Stage 4 NSCLC. It upsets me they couldn't take it out. I don't look at life expectancy or Google.

Good luck on Thursday, how do you feel after.

Keep in touch Red

Love and best wishes

[Red58 in reply to Tike3]

Don’t know what I’m doing seem be post to myself

[Elt79]

I had immunotherapy for 2 years - was fortunate to have minimal side effects. Mainly some fatigue and skin irritation/itching, which continues although I finished in November 2020. Best of luck with treatment x

[Manninmaid]

I had really bad skin irritation when I first started on immunotherapy and no topical treatment helped. However a course of oral steroids sorted it and although I get very tired I haven’t had any further problems since. Hope all goes well when you resume your immunotherapy. x

[foodbankcupar]

Yes I had side effects.Bronchitis three times a year. Phlebitis and Ballunitis .

Some bronchitis attacks were quite severe.

Consultant said I was susceptible to chest infections because of lung cancer.

Regards

Kevin

[JanetteR57]

I've often clinicians at conferences talk about side effects of immunotherapy but also their comments are that it's a sign that the immune system is mounting a response so a sign to be taken that it's doing its job. everyone's immune system is different anyway and why some people have allergies and others don't but it's really hard to predict who may have side effects and who won't.... this latest publication by Roy Castle lung cancer foundation may help answer some of your questions.. good luck. roycastle.org/app/uploads/2...

[Red58 in reply to JanetteR57]

Thankyou janette

[MacColl]

It was the first treatment I had (Pembrolizumab) but the second dose caused hepatitis liver problems and it was discontinued halfway through the second dose …shame as I began feeling much better after the first dose. I also had pneumonia two weeks after the hepatitis.I was given 3 months rest, but developed a brain tumour in that time which had caused a seizure. Changed consultant, and he gave me some chemotherapy then had me go to a specialised unit for a one off stereotactic radiotherapy treatment (2020) which worked well for now, and then a second small one in 2021 which was also treat at the same place which seems to have gone on the last scan and they repeated the scan to check at regular intervals. Just due another brain scan in a few weeks. Fingers crossed that remains stable.

Memory etc seems to still be very good with just a tiny bit of recall & headache now (mainly when tired) and then which resolves itself after a few hours.

After the first immunotherapy problem, my consultant decided to try a slightly diferent ‘milder’ one: Atezolizumab …..just had the second dose last Thursday and so far nothing worse than sleeping a lot and a few aches. Will report back on any changes.

Everyone can have a different experience with all treatment including immunotherapy, but it seems to be well monitored for side effects etc and any problems dealt with quickly. Mine is administered by infusions at home every 3 weeks …some have differing strengths and timing.

Currently in hospital again though since Friday with two small blood clots needing Heparin injections to deal with them. One small one on my heart, the other in a lung. Seems it’s a complication of the radiotherapy I had 🙄

Got my fingers crossed that the Atezolizumab continues to be trouble free for me and has a positive effect on the cancer!🤞should know more soon.

[Red58 in reply to MacColl]

Good luck let us know how you get on❤️

[Cockailschemocancer]

Hi Red, after any treatment, if something doesn't feel right, you should call your team immediately. I had 8 rounds of immunotherapy and unfortunately also got colitis, which is horrendous. This lasted quite some time and I can never have that treatment again, but like someone else said, it can boost your own immunity, so I just have to hope that is what is happening now as I haven't had treatment for around 18 months now and still stable, which is the best thing I could hope for - so hope it all goes well for you xx