immunology treatment side effects

Hi Jooles! Welcome!

Unlike chemo, the immunotherapy side effects usually take a while to appear as your body gradually responds as it circulates and accumulates in your system. 
My partner is also on ipi/nivo and we were told it usually takes at least 2 cycles (3-6weeks) for side effects to kick in. He's almost half-way through the 12 week program (first infusion was 20th March with a 1 week delay for some SRS) and hasn't had any major side effects apart from fatigue which is treated with an afternoon nap. His liver enzymes were slightly elevated in his last bloods but not enough for them to treat or delay treatment. Overall feeling fairly normal. 

However I have read on here that some people experience side effects after 1 or 2 cycles so I guess it's quite variable. ?maybe depending on age or any other baseline health issues. 

What stage/type is your melanoma? Hopefully you continue to feel well and dodge any of these side effects so they can complete your treatment!

Hi Jooles, 

I’m 7months into my immunotherapy journey and I’m Stage 4 palliative. Unfortunately for me I have had major side effects but on the plus side the treatment is working on my cancer.

After my second round of the double dose I had an allergic reaction which in turn resulted in me contracting autoimmune hepatitis. This put a stop to treatment until my liver healed. This took three months but during this time the immunotherapy was still working within my body. 

At the end of March I was introduced back into treatment and have had two single rounds of Nivo but I have now got Colitis which has put a stop to my treatment again   I’m currently on steroids and loving food again. 

My oncology team have been amazing and have said that everybody reacts differently and have said that the immunotherapy is definitely working, unfortunately I’m just reacting to everything as my body wants rid of the cancer.

Even though I have had these side effects my journey has been a positive one because of all the support & care I have received from my oncology team but most importantly my family.

Every journey is different and I wish you all the best with yours ️

Kate xxx

Hi,

I'm about 75% of the way through a two-year course of treatment.

Long story cut short: drugs have zapped my liver/lung metastases and they are no longer evident on CT scans.  The side effects have been easily tolerable - slight fatigue for the first few treatments (not now however) and my skin is drier than it was pre-treatment. The only significant issue is that my immune system has destroyed my adrenal glands, so I'm on life-long low-dose steroids to replace the cortisol my body no longer produces (a serious condition, however treatable with two small tablets per day).

I consider myself lucky in that the treatment seems to be working, and I've avoided some of the debilitating side-effects that are mentioned on this site.  Unlike chemo, immunotherapy is very body-specific, and therefore it's difficult to predict how your body will react.

Good luck with the treatment - may it be effective and your side-effects be minimal!

Hi Emo thank you so much for sharing this information with me. It’s great to hear that the treatment is working. You have given me hope. Wishing you all the best

Thank you for sharing your story. I wish you lots of luck Kate x

Thank you for sharing 

Hi Scouse mouse/Kate,

I too have suffered from colitis since having immunotherapy. Did you oncology team manage your colitis so that you could restart treatment?