Keytruda
 

It looks like I was approved for Keytruda, starting in the next two weeks. Tucatanib is not going to work out for me, b/c I was just on Tykerb, and because it seems that they are not offering compassionate use.

I hear such terrible things about Keytruda's--and all immunotherapies'---side effects, that I'm very apprehensive about it. The father of a friend of mine was on it for melanoma and he says that it gave him Parkinson's, and I know autoimmune diseases are associated with the drug.

Kadcyla did not work for me; i had to have platelet infusions, and i was so tired i could barely teach. so, i don't know if i would get Keytruda alone. i have brain and lung mets, so i'm not sure if they would put me back on perception.

Anyway, my question is, does anyone here have experience with Keytruda? Especially positive ones? Is there anything I should do, in terms of maintaining my overall health while on it? Seeking information, advice, wisdom, support, as usual, from my wonderful friends here. Love and light to you all!

Re: Keytruda
 

Katherine

Kaytruda stimulates the T cells of the immune system by blocking the PD-1 ligand. Yes you can have severe immune side effects but these are rare. The usual side effects are fatigue, anemia, possible sodium loss and increased blood sugar. You will be closely monitored by the doctor. Try not to read the package inserts. They are informational but more important they are used legally to protect the drug company from lawsuits. Good luck with the Keytruda.

Paul

Re: Keytruda
 

Katherine,


I have no Keytruda experience, but agree with Paul that you may not experience the scariest side effects. I am glad you have something to throw at the beast! Please let us know how it goes for you.



In your corner,
Laurel

Re: Keytruda
 

I have a close guy friend who has lung cancer and has been on this for several months, maybe 6 and is in remission and doing well. He is going to Taiwan tomorrow, in between his cycles, so just saying he is not having much in the side effect department.

(Forgive me if I already asked...did you consider Nerantinib with xeloda? Both oral, and nerantinib crosses BBB).

Re: Keytruda
 

I was on Keytruda along with TDM1 for 18 months. Very easy drugs, tolerated it much better then Herceptin and perjeta. Was able to travel to Italy, Paris and Croatia while
on it. Very doable, I had no issues till it stopped working. Next week I'll be starting the HER2CLIMB, praying its as easy. Good luck to you and please keep us up dated

Re: Keytruda
 

So, I start Keytruda on Wednesday. Scared but hopeful. It's amazing, isn't it? -- how quickly this routine becomes familiar: first, the disappointment and fear, when the latest scan shows progression; then, the feeling of confusion and panic, when you don't know what next step to take, (esp. for those of us who have long since left the "SOP" protocols), then, the hope and optimism of starting a new treatment-- maybe this will be the one! -- followed by... Well, so it goes. And for some of us, there are miracle drugs, NED achievable. But really, I just want another 3 months of relative stability, followed by more scans, followed by another 3 months. My expectations are smaller, but there must always be hope.

So many of you brave women living within these parameters. I am so sad that we are here, but I am also grateful, and I am in awe of your strength, your passion, and your determination. We are all stronger for sharing our stories.

Thank you for sharing yours!

Re: Keytruda
 

Katherine;

My best to you on the Keytruda. I hope it gives you NED for a long time. There are so many new drugs coming according to my onc that we can go years and years. The shared stories here do give me hope and optimism and without that I would be lost. God bless and we'll be waiting to hear how you are.

Cathy

Re: Keytruda
 

Katharine,


Good luck with the Keytruda! BTW, I loved your most recent post. It was so beautifully expressed! You captured the roller coaster that is this battle. Hoping Keytruda gets you to a nice long dance with NED!

Re: Keytruda
 

Good luck with the Keytruda and I agree with Laurel ... your post was so profound. Reassuring news from Cathya's onc too ... lots of new drugs and years to try them all ... keep them coming!


I hope the Keytruda will bring you back to NED for a long, long while!


Carol Ann

Re: Keytruda
 

Katherine, thank you for your post - it rings so true! Having some kind of treatment plan is so important. Good luck with the Keytruda!
Best wishes..... Pam

Re: Keytruda
 

Thanks to you all! Got Keytruda today, which seemed fine. But my oxygen levels, when I walked down the hall, and started coughing, was 88, so they ordered home oxygen. Yipes. The nasal cannula and green tank on wheels is not a good look for me! Please, keytruda, work fast.

Re: Keytruda
 

Hope it works fast and you can ditch the oxygen!


Carol Ann

Re: Keytruda
 

Katharine,

What you may be experiencing is a reaction to the Keytruda that is causing mucositis, the swelling of your mucous membrane. This happened to me with my first infusion of AC. I felt breathless, and stuffy. It was weird. I couldn't cry and have a right old pity party for myself because crying REALLY made me feel like I was drowning! I limited my activity to lessen the shortness of breath and it resolved after a few days.

My Onc told me later that I should have called and they would have treated it (I do not recall with what or the intervention). It resolved after a day or two. I do recall her saying that I would not experience it with my subsequent infusions and she was correct. I hope that will be the case with you.


Laurel

Re: Keytruda
 

Katherine,
How are you doing today?

Re: Keytruda
 

I am hanging in there. First Keytruda treatment was uneventful, though my cough/shortness of breath has gotten so bad that they put me on home oxygen. It helped me get a good night sleep last night, but it's just one more thing to have to deal with. And it's such a good look for the woman on the go!

How about you, Flori? What's the news? Hope your spirits are up. I struggle -- it's hard, and there's always a next thing to quickly assess, then fight to get -- clinical trial or cyberknife, or new treatment-- and the uncertainty hanging over it all. (Or maybe it's the certainty that looms.) This site has helped me so much, and continues to help me. I feel as though there are so many strong, courageous women here, and some who aren't here any longer, but were here, and were inspirational, and I do feel privileged and grateful to know you all, even a tiny amount.