- February 1, 2019 at 10:19 pm
Can anyone share the experiences with combo yervoy + Keytruda ? My mom is starting her first infusion next week. I am really scared and making false wishes that I can escape this but the truth is I have to walk this path with mom to her recovery. She is so healthy I am afraid this will put her down. Please share experiences.
- February 1, 2019 at 11:50 pm
Hello my dear,
I am sorry that you and your mom have to go through this. My mom is stage IV and we have been trying several therapies till now. I know “trying” is absolutely scary when you are uncertain about what is going to happen.
However, with time I realized that majority of side effects can be reversed, even the ones that hit strong. Also, the fact that your mom is healthy and feeling really well will give her a better shot at fighting side effects, if any.
You are walking this path with your mom, just keep waking, try to enjoy when you can, have fun with her right now and hang out while you are both present and healthy.
I hope you find peace of mind and calmness soon
My prayers goes to you and your mom, wishing you all the best in the upcoming session and onwards.
- February 2, 2019 at 5:58 pm
Hey there, my husband is also doing the Keytruda + Yervoy combo — regular dose Keytruda, reduced-dose Yervoy. We are trying this because a) he has been pretty sick for about a year, so we want the boost from Yervoy but also want to try to reduce severe side effects for his sake and b) reduced-dose Yervoy is much cheaper (we're privately paying for the Yervoy only).
He tried Opdivo + Yervoy last April (Yervoy at regular dose) but his disease progressed way too quickly so he was switched to BRAF inhibitors a week later. At that time Opdivo + Yervoy was covered for him by the province. Now only Keytruda is covered for him. There is no official protocol here in BC for him to be on Keytruda + Yervoy now, but our oncologist is supporting our decision to privately pay for the lower-dose Yervoy since the early studies that exist suggest that Keytruda + Yervoy leads to more and longer-lasting responses than Keytruda alone.
He's been on Keytruda since November but we only got him started on Yervoy this past week. So far, so good. The only side effects he has experienced are an itchy rash since starting Keytruda (easily controlled with prescription creams), and a moderate increase in nausea and vomiting since the Yervoy infusion earlier in the week. He has experienced moderate fatigue September or so, so we're not attributing that to the drugs but rather to the disease and probably all the pain medication he's on.
We're tentatively hopeful so far. The Keytruda seems to be working on its own. He hasn't had a follow-up PET scan yet since he started the drugs (coming in the next 2 weeks) but he certainly hasn't gotten worse since November, and we think he's improving — he started Keytruda needing to use a wheelchair most of the time, and now he gets around with a cane. He's also feeling well enough to cook dinner and do dishes most nights! He even walks our dog around the block. His blood work has been stable most of this time.
He had an MRI recently which showed a small, new 3mm mass, but it's not clear whether that popped up before he started Keytruda or not (because his last MRI was in August 2018 which was before the BRAF inhibitors stopped working). Since everything else seems to be getting better, for now we're trying to stay optimistic and hope that the new mass came up before he started Keytruda and that now hopefully Keytruda (and Yervoy) are shrinking it again.
LilaraParticipantHi, I just read your post . I hope you are doing well. My mom is also the same situation as you. We are in Ontario and my mom progress on Keytruda . My oncologist wants to start me her on ipi only . I have suggested ipi/nivo combo but she is saying too much side effect . So I told her about Keytruda and low does of ipi after all the research and she said they do not cover it . So I would like to know the cost for low does of ipi if we want to pay it privately .
- November 26, 2020 at 3:30 am
Please let me know and also how it worked for you.
- February 4, 2019 at 5:00 pm
I had yervoy/opdivo, 5 treatments. I had seven side effects starting the second week after the first combo with the rash. I was very excited to see it because I knew then my immune system was having a reaqction. My side effects were not devestating, I still worked full time missing maybe 1 day a week during the combos but as the worse side effects let off it was life as normal. Total 57 treatments and had scans last week and now 18 months NED.
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