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Keytruda side effects

Little Annie
Posts: 28
Joined: Jul 2018

Hi,

have any of you fine ladies been on Keytruda and could you please speak on side effects.

thanks

Little Annie

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

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.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

I have been offered keytruda/lenvima for an option for my 3rd recurrence of UPSC. It is very new and was approved in Sept. 2019 in the US, Canada, and Australia. However, the clinical trials are ongoing so no one is sure of the results. I have some other options but this one seems the best unless I op for surgery which is questionable. So hope we get more who have or are on these. I followed der Maus and we emailed about Keytruda.  Thanks cmb for posting those as well.

Little Annie
Posts: 28
Joined: Jul 2018

I am also on 3rd recurrence of UPSC.   Have looked at many trials but the immune checkpoint inhibitor sound like the best choice.

Armywife's picture
Armywife
Posts: 450
Joined: Feb 2018

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's picture
Tamlen
Posts: 281
Joined: Jan 2018

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

LisaPizza's picture
LisaPizza
Posts: 331
Joined: Feb 2018

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

Little Annie
Posts: 28
Joined: Jul 2018

Just talked with my oncologist and he is all in favor in starting the Keytruda and Lenvima.......so as soon as Avastin washes out of my system, I plan to start this.    I am very concerned about side effects and will keep you all informed of my experience.  

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

LA, I go in Tuesday to try and decide treatment choice. My children, some medical friends and I have researched for a month all the options. My UPSC keeps recurring on the V cuff and can have no more radiation.  I am leaning toward the K-L as well. Keeping my fingers crossed for both of us. DF

BluebirdOne
Posts: 366
Joined: Jul 2018

Let us know how your visit went. 

xxoo

Denise

Fridays Child
Posts: 196
Joined: Jul 2019

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!

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

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
Posts: 366
Joined: Jul 2018

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

Denise

 

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

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
Posts: 196
Joined: Jul 2019

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.

barnyardgal
Posts: 268
Joined: Oct 2017

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
Posts: 1091
Joined: Jun 2016

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.

barnyardgal
Posts: 268
Joined: Oct 2017

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.

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