Keytruda side effects

I haven't taken Keytruda, but derMaus wrote about her side effects from Keytruda at https://csn.cancer.org/node/318102 Gardena also shared some information about her experience with it at https://csn.cancer.org/node/318543

As you may know, derMaus is sadly no longer with us, but Gardena still checks in periodically. You may want to private message her if she doesn't spot this question. You can also try searching for the term "immunotherapy" to see if other posts pop up.

When I was diagnosed in April of 2017, I spoke with a young friend who is a PhD geneticist.  She is the one who told me to ask for genetic testing to see if I had the markers for Lynch syndrome.  She said that if I did (MSI-H), I'd be eligible for Keytruda and that it was so amazing it had been fast-tracked to approval because the results were so good.  I have no personal experience with it because I haven't yet had a recurrence, but it is definitely reassuring to know that it's there.  

Tamlen said:

Approved for non-MSI-H too

Just for reference of others' reading this who may not be aware, Keytruda has been shown helpful for non MSI-high now, too.

In combination with lenvatinib (Lenvima), but at least that one is a pill.

This is interesting to me since I was evaluated last summer for a clinical trial of they Keytruda/Lenvima combination.  My lung met had become "not concerning" and wasn't large enough any more so I was disqualified - and then almost immediately they called to tell me the combination had been approved.  My oncologist felt like we needed to save that for later, but I'm watching.  I have a friend on Keytruda for a different cancer now, so it'll be interesting to see how she does.

Best of luck to those of you taking it!

I have not had keytruda but I was in a clinical trial for a different immunotherapy drug. In some cases, the immune system can begin to attack your own body, which happened to me. I don't believe it happens very often, and mine was a trial without published results whereas keytruda is an approved medication with published results.

BluebirdOne said:

jan9wils

Glad to hear from you again. Hope your recovery from surgery has been uneventful. Let us know what your next steps might be,

Denise

 

Thank you for your thoughts! I'm doing well after my surgery but still on restriction for another few weeks. Trying not to lift things over 10 llbs is hard. i began taking letrozole three weeks ago and so far am not having the same side effects I had three years ago, so that's good. I'm not sure what I want to do for treatment. My ONC recommended another PET scan in March and then we can explore options once we have the results. So that is my plan for now. I think I want to try metformin.

Fridays Child said:

Glad to hear you're doing well

It is hard to follow the restrictions but better than starting over.  Interesting to note that you aren't having the same side effects with the letrozole this time. Along with some other side effects, after I'd been on that for about 6-7 months my hair started coming out.  They switched me to Megace (not because of the hair) and it's at least slowed down.  At some point they may want to put me on letrozole and everolimus so I'm interested to know that the side effects may be different (or absent) if I take it again.

I've been on letrozole (I was 3a, grade 2 endo) about 1 1/2 years now with no issues. The dr did put me on vitamin d, calcium, and super b complex. 

MAbound said:

Folate

I'm in the midst of making documents to synthesize what I've learned about supplements from various sources. Your note about taking a b complex supplement with this treatment made me curious as to why and since I was working on folic acid/folate anyway I found this as to why you may have gotten this recommendation.

https://www.ncbi.nlm.nih.gov/pubmed/15094213. Folate apparently helps to sensitize tumor cells to immunotherapy. 

I also came across this: https://www.hsph.harvard.edu/nutritionsource/folic-acid/  Scroll down and click on the button that says "cancer".

I get that we might need to take folate during chemo because it targets active tumor cells, but do any doctors tell you to stop taking it after chemo is done? I wonder how many people continue to just keep taking it unwittingly and if it might have an impact on recurrence? I only took B12 during treatment because I was concerned about the mega doses of B6 and Folate in such complexes which have upper tolerable limits whereas B12 does not.

Ill have to check with her. I thought it was in response to my concern about thinning hair while using letrozole. I thought biotin was answer but she said it was more complicated than that and said to take super b. Though maybe I missed something. My hair is nice and full anyway☺

One other thing she mentioned is if I take a multi vitamin, to only take one without synthetic vitamin a, as that could be a cancer risk. So I take a whole foods vitamin.