Keytruda

[Jrb12]

I hope everyone is doing well. After genome testing, it was determined that I woild be a candidate for Keytruda. I have been at this fight for 6 years, Taxotere, casodex, lupron, xgeva, Xtandi. They all worked until they didn't. I am still on lupron and xgeva. I had my first infusion of Keytruda on July 2. My question to you all is anyone on Keytruda and if you are how are you dealing with the incessant itching? I have never experienced this side affect and it is at times unbearable. Thank you.

[Tall_Allen]

What did your oncologist say? Did he prescribe topical steroids, topical benadryl, or topical anesthetics (or all 3)?

[Jrb12 in reply to Tall_Allen]

Yes a topical steroid and oral antihistamine. I was inquiring to see if I may be overlooking a remedy. Actually heading out now to get my prescripton. Thank you.

[tango65]

This links has some suggestions about dealing with this problem:

cancer.net/coping-with-canc...

[Jrb12 in reply to tango65]

Great, thank you. I am precribed Triamcinolone and will begin applying it.

[tango65 in reply to Jrb12]

Best of luck on the journey!!

[Jrb12]

Your absolutely correct. My doc when he saw the report exclaimed "Holy S..t". I'm blessed!

[Chugach]

I went through pretty much a lot of what you did before I qualified for keytruda. It’s been 6 months now on Keytruda. I’ve had some skin irritations and itching but it hasn’t been distracting a more minor reaction for me. I love this drug

[Jrb12 in reply to Chugach]

Wonderfull! Pretty sure my issue is a bit more irritating as I was on predisone for 6 months and went off cold tutkey to start Keytruda. There was only a 2 week gap. The prednisone was 10mg daily.

[Chugach in reply to Jrb12]

Keytruda took my PSA from 122 to undetectable in two doses and now all bone pain is gone and mets are healing based on scans. My PSA has been undetectable for 6 mo now - I wish you the same success

[ctarleton]

I've had Keytruda just 6 times now, once every 3 weeks, for more recent concurrent metastatic melanoma, while still on long term Xtandi for the prostate cancer. My anecdotal initial experience was a couple of small, itchy red patches on the middle arms. For me, they seem to clear-up with just some over the counter topical low-dose Hydrocortisone cream, then get a little red if I forget about them for a few days, then clear-up again with a little cream.... rinse and repeat. If it were worse, I'd certainly report it to my doctor and consider getting a prescription for something stronger and/or more itch-relieving. I've also noticed some occasional stiffness and arthritic-seeming mild pain in the joints of two fingers of my left hand. May or may not be related.

[Jrb12 in reply to ctarleton]

Yes doc prescribed a potent topical that I hope will work.

[Jrb12]

Not sure unless I read yhe report which I will and post if I can underdtand it. But meantime "Thank You Lord"!!

[Vindog29]

My husband has the MSH2 mutation only did 2 treatments of Keytruda before he had to stop because of high liver enzymes but even with just 2 doses now 2 years later his psa is still undetectable and feels great (he just left at 5am to go on a fishing boat). The doctor at MSKCC is still amazed that jusr these 2 treatments made such a significant difference. My husband does have itching but we thought was separate issue I doubt years later would cause it but who knows. My husband was stage 4 chemo,zytiga didn't work, Keytruda was miracle and a true blessing I hope the same for you and the itching subsides and disappears. Good luck.

[Jrb12 in reply to Vindog29]

Wonderful for hubby and you! There is hope sprinkled with lots of prayer.

[TheTopBanana]

He did?? BRCA? I have to Google this.

[TheTopBanana]

Congratulations!! My father is getting his genome testing back in a couple of weeks, here’s to hoping. Wish you all the best on your journey!

[Jrb12 in reply to TheTopBanana]

Thank you. I have been asking for the testing for 2 years. When the clinical trial didn't work, the director of research listened to me. Both the diretor and my oncologist where blown away with the results.

[TheTopBanana in reply to Jrb12]

Can I ask what your markers were?

[Jrb12 in reply to TheTopBanana]

It says Gene MSH6 with data describing the mutation effect. If I post the data maybe Tall_Allen or Nalakrats can decipher.

[TheTopBanana in reply to Jrb12]

I’m new to this field since we thought my father got cured (then the cancer came back with bone mets) but I’m learning as I go along. Is there a lot of different markers? I’ve only heard of BRCA.

[Brackenridge in reply to TheTopBanana]

What type of genome testing did you all have - germline or liquid biopsy or other?

[Jrb12 in reply to Brackenridge]

105 gene liquid biopsy

[Jrb12 in reply to TheTopBanana]

Apparently, that is the reason a genome test is so important. I am not as familiar with the types like some of the other members. I insisted on the test from the info I received on this forum.

[Hotrod65]

50 infusions over 4.5 yrs of Keytruda..handling it well, itching not an issue for me.... Adrenal Insufficiency, controlled with Prednisone my only side effect.

[j-o-h-n]

As I've posted many many times, I am being treated with Keytruda for my lung melanoma and it's working. I'm also fighting those tiny little Pca bastards.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/09/2020 5:20 PM DST

[pwallace]

wow! this is an amazing thread! did you all find out about these makers from germline testing or somatic testing?

[45RPM in reply to pwallace]

Totally agree. Amazing stories, so happy for those who have benefitted.

[Jrb12 in reply to pwallace]

The lab is Tempus in Chicago.

[dasyluo]

May I ask if Keytruda is free or not in USA? I am in Canada where it is not free and very expensive about $10,000/dose that I was told.

[Jrb12 in reply to dasyluo]

It is covered by medicare part d and medicare supplemental insurance.

[Jrb12 in reply to dasyluo]

USA

[dasyluo]

Are you talking about in USA or Canada?

[GAdrummer]

My husband has been on Keytruda for one year. Last week's PET scan showed all nodes back to normal size and non-avid to the tracer. Even the lesion on his pancreas was no longer showing metabolic activity. Medical oncologist says he is the star patient and will be kept on Keytruda for another year. Side effects: skin itching controlled by hydrocortisone cream, adrenal insufficiency and hypothyroidism after six months, and iron deficiency increasing. Liquid biopsies found no BRACA problems despite his mother and grandmother dying young of breast cancer. But eventually other possible targets were found. After exhausting 10 years of trying everything approved for node only mCRPCa and nearly killing him in the process, the medical oncologist finally pulled Keytruda onto the case. We all are so glad he did. From what I've read, it works in only about 20% of the cases, which is why doctors are reluctant to try it. The adrenal insufficiency side effect is on the rare side, but not to be ignored. My husband is a rare case.