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Panatumumad

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

Anyone else on Panatumumad!? I've done FOLFOX and FOLFIRI, I was responsive to botH and NED for a bit but cancer returned. Scan after 4 treatments shows nothing new growing and what was there Is shrinking. This route was chosen after my tumor was genetically sequenced and the results, several years later, were sent to a company who anaylzes those results and recommends individualized treatment. A lot has changed since my diagnosis in 2014!

abita's picture
abita
Posts: 778
Joined: Dec 2017

I think that is like the drug I am on, erbutix. I am on erbutix and irinotecan. 

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

I looked it up on WebMD. Definitely some similarities. Both have frightening side effects. I definitely have rash. The rest were side effects that I always have with chemo: nausea, Fatigue. I hope you are doing well with your treatment.

abita's picture
abita
Posts: 778
Joined: Dec 2017

I get the rash, and the oncology dermatologist gave me medicine for it. But I mostly just take a hot shower when it gets bad and that soothes it. The nail bed infections get me. It is funny when I am out and forget and bump my toe as I scream out a cuss word without even thinking. I have the fatigue, and yeah, it is rough BUT, after folfox, seems much easier. My liver mets  shrunk to cells that can't be seen on ct faat. But the lung mets are tougher. They are just staying about the same five or take

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

What did the oncology dermatologist prescribe for you? I am on an oral antibiotic and they also gave me topical hydrocortisone. I stopped using the hydra Cortizone because it just made it worse. I use a topical anti-inflammatory design for rosacea. It helps a lot I also use Neutrogena T gel because my scalp itches. The rest of my body is really dry so I use a lot of moisturized. My oncologist has suggested a dermatology referral, but I'm hesitant because I don't know what more they can tell me that I'm already doing. Thanks

abita's picture
abita
Posts: 778
Joined: Dec 2017

Is it an oncology specialist dermatolgist? He gave me alcometsone for face and when I get them inside my nose (those nose ones really hurt). for the other places triamcinolone acetonide and silvadine. I can't say if they work because haven't used yet. Because of my cats, I only use the medicinal creams if it hurts bad and hot shower doesn't help. I splurge and use creme de la mer on my face, and I think that helps. My face ones don't hurt that much, but they do bleed, which caused funny looks from delivery people before contactless delivery when I would open the door before checking to see if there were a lot of dried blood on my face :) I got a body cream in my fabfitfun order that is the best I have tried so far for my dry skin. Like I put it on my arms and belly dry skin, and days later, still smooth and silky. It is Grown Alchemist. To be fair, my rash isn't as bad as some I have seen, so I consider myself lucky. I had an oral antibiotic when I first started this drug, got off it for a cream drug trial, and didn't start it again because it was causing my teeth to have a gray hue, that went away when I stopped taking it. Oh, he gave me a foam to wash my scalp with to stop the itching. 

Now, you will probably get something that is suitable for you as we are all different, but I listed all of these to let you see why you should take him up on that dermatology referral. :) 

At MSK, they really are about managing your symptoms. I had my first mouth sore and let it get to the point where I couldn't even open my mouth to take a sip of coffee without crying from the pain. My oncologist quickly sent me a prescription and told me to never let anything get so bad, they want me to feel as good as I can so I have the best quality of life I can. Oh, and the dermatogist even told me the medicine to put on the nail bed infections.

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

Thanks for the info. It's nice to know that there are other things to try in case my rash gets worse or what I'm doing stops working. Stay well!. I think I will take my doctor up on her dermatology referral, putting off for a few weeks because I want to limit my going out of the house while all the virus craziness is around.

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