Anyone having treatment at the moment with Pembrolizumab
Hi Hooky56
I haven't had Pembrolizumab but there are lots of people in the group who are on it or who have finished their course of treatment.
As none of them have come forward, I'm going to tag Mendoe and Paull into my reply to you in the hope that they'll see this message and pop on to share their experiences with you. Mendoe posted 3 months ago that they had just started treatment while Paull had posted that his wife was about to start.
I can see from your profile that you start treatment on Monday so I'm wishing you all the best.
Hi,my wife’s treatment has been Nivolumab and Ipilimumab so maybe different.I wish you all the best and take each day as it comes
I can't seem to see how to find the original post. So:
I have now received four Pembro with no serious side effects. My advice would be to hydrate well before each infusion. Tell your CNS about any side effects. So far I am effected by fatigue, lethargy and muscle weakness, each of which seems to be fairly common. As I am 75 this is not a big deal but for anyone in employment it could be.
Hi,she’s had her four double dose immunotherapy treatments and was about to start single dose but had to defer due to upset tummy and go back on steroids.During all this they found 3 spots of melanoma on her brain so she’s since had surgery to remove the larger one and was due to start targeted radiotherapy on the other 2 but her last MRI showed the surgery site clear and the 2 other spots had gone! so finally some positive news that the treatment may be working.Had a CT on Monday so waiting anxiously to see whether the other melanomas in her body are being affected.
Hi Paull
That's great to hear that both the surgery site and the two other spots have gone after immunotherapy. I'll keep everything crossed for the results of the CT scan
Hi Mendoe
Thanks very much for popping on to share your experiences with Hooky56 .
If you want to find previous posts, the easiest way is to click on your username, then select 'activity' and then scroll right to the bottom of the page which makes the website bring up all posts where you've commented.
I'm glad to hear you're not suffering from any serious side effects
Hi Hooky56 and welcome. I finished my year of three weekly Pembro last August and really only experienced joint pains, constipation and tiredness so got off lightly I think.
I made sure I was well hydrated before my blood tests and then again for my Pembro infusion. I know some people on here have had more serious side effects but fingers crossed for you to continue your year with no problems hon xx
Hi Paull!
This is great news about your wife! If the brain ones have responded to treatment, there’s a good chance the rest of the body would have too.
My partner also developed brain mets while he was waiting for a lymph node dissection on his groin (we waited 8 months - that’s another story!). He also got bad stomach issues after the 3rd ipi/nivo so back on the steroids & cancelled the 4th. But our doctor did say people who get tummy trouble often respond best to treatment.
Recent scans show brain mets have all reduced in size >50% & lymph node in his groin > 60%. Tolerating the single dose Nivo absolutely fine. Hopefully your wife will feel better on this too.
Let us know how the scan results are. Staying positive for you!!!
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