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Kaytruda

Hi All,

I wonder if any of you might know anyone with MS ( any type although mine is secondary progressive ) who is on the cancer drug Kaytruda. It’s an autoimmune drug that destroys the skin of the tumour so that the body can then fight the actual tumour. It has had amazing results, so I’m keeping all extremities well and truly crossed as I’ve had 2 courses of chemo and a six week course of Radio therapy and an operation, none of which got rid of my tumours, so this is my last option!

It seems there was nobody on the trials for the drug that had MS. I’m getting a whole host of symptoms as side effects that are, to me MS symptoms, although my oncologist says they are not…I nearly said I’ve had this wretched disease since I was fourteen, I think I know the symptoms! However I quickly came to the conclusion that you don’t argue with a guy who has your life in his hands!!!

My oncologist thinks I maybe the first person( with MS) in this country to have it but it’s been more widely used in America, I would simply like to know if someone else with MS is having it and are they having such extreme side effects. The infusion is given every three weeks but the side effects are putting me to bed for a couple of weeks between each infusion.

I don’t usually post on Everyday Living but on this occasion I think I might get a wider audience. Thanks for reading.

Take Care everyone,

Nina x

Hi Nina,

I too have SPMS but am only taking 60mg total, per day of oral Baclofen (my only chemical cosh!) My mode of transportation is a scooter. Can transfer… just.

Please enlighten me as to what this Kaytruda cancer drug that gives you amazing results actually does?

Don’t care for feeling s***** with strange side affects if I can help it!

Thanks,

Hi Nina,

I’m so sad to read you’re post today and that you’re going through such a difficult time I wish I could offer you some helpful advice, or information but unfortunately I’m unable to do so as this is something I know nothing about, sorry.

I do hope that one of our other members on here can help you.

Sending you warm thoughts and prayers, and plenty of virtual hugs.

Take Care.

Twinkle Toes xxx

I did pop "Kaytruda " in the search facility at the American MSS, but sadly came up with nothing. Needless to say, I hope your role as bold pioneer is rewarded with some amazing results.

Fingers firmly crossed.

https://www.nationalmssociety.org/

1 Like

Hi Nina I am so sorry to hear that you are having such an unpleasant time. I do hope that you also get amazing results. I will certainly keep my fingers crossed for you. Thinking of you and sending hugs and prayers. Sue xx

Hi Nina,i know nothing about it,but i am hoping you get what you want from it,sending you love and best wishes ((((hugs)))) J x

Thank you Whammel,

Both my son and my husband have searched the Internet for anything regarding MS and Kaytruda, my son is a psychologist so has access to medical information from the world over, he found nothing! My husband did eventually find an American forum but it was people asking about having Kaytruda when they have MS. I begin to wonder if I’m the only person in the world with MS being given Kaytruda! My worry is that I don’t feel my oncologist knows enough about MS from odd comments he’s made. It’s certainly making my MS react. I obviously hope it will work because I’m all out of options but I suppose as I’m “going”anyway it’s worth a try! I have a scan next week when from the results it will be decided by the powers that be if I am able to carry on with it at the moment the side effects are so bad I seem to be in bed from one treatment to the next so I’m starting to wonder if I wouldn’t be better to stop it and have a good quality of life? It’s a tough decision!

I have to admit I had hoped you would see my post, I’ve noted that you nearly always respond to medical questions! Thanks again and also thanks for the link.

Wishing you the very best,

Nina

Thank you TT!

I think maybe that the person who told me I was the only person with MS being given Kaytruda in the UK was certainly correct!

Thank you for your thoughts and prayers, it means a lot to me! Whammel has sent a link to the American MS society so I am going to try posting on there to see if I get any answers! Thanks again,

Take Care,

Nina x

1 Like

Thank you both, Sue and Mrs J,

lt means such a lot to me,

my very best wishes to you all,

Nina x

Sadly, I am no medical expert, but ok at looking stuff up and can see a few Kaytruda support groups on Facebook, which might be worth trying.

Also, are you still taking ldn, because according to the below post it is not compatible with Kaytruda and could be causing problems. I expect you know this already, but just in case.

"Noel Wolfe Update from Skip’s Pharmacy. I left the pharmacists a message last week, and got a voicemail from one of them this morning. This is what they said: “I would recommend that he is NOT on Low Dose Naltrexone while taking Keytruda, just because it does change the way your immune system works and we don’t want to interfere with that benefit happening or precipitate any further side effects. So, my recommendation would be to not be on Low Dose Naltrexone while taking this medication.”

Fingers crossed you will get over these miserable side effects and start to see some good results soon.

Hi Dizzy,

The drug Kaytruda is for cancer not MS. I have lung cancer as well as SPMS and this is my last treatment option but it is making my MS worse and I was trying to find someone else with MS that is also taking Kaytruda to see if their MS has been affected.

Take Care,

Nina

Hi Whammel,

You always seem to have helpful links for people!

I cant believe that you remembered I was taking LDN!

When I was first diagnosed with lung cancer I had to have three broncoscopies, the first was to determine the type of cancer but they caused a massive bleed, the second one was to take a sample of the tumour that would normally have been taken on the first one but they didn’t take sufficient hence the third one! They are so horrible and as the sedation is morphine I stopped my LDN and was advised to stop it during the treatment. I was still able to take biotin and after a few months of no LDN I realised that my bladder was fine…LDN helped my bladder and parethesia but what I hadn’t realised was that biotin had taken over controlling my bladder and my skin problems so I stopped the LDN totally and I was fine. No point in spending on medication if I don’t have too! I’m only sorry that Biotin doesn’t seem to have been such a help to you.

I don’t do Facebook but I will get my husband to check it out, we have the Kaytruda website so maybe they can help me find someone else with MS that is taking it. My fear is simply that it’s is making my MS worse and nobody seems to be able to tell me if this is permanent or not.

Once again, many thanks for your help, it’s much appreciated. I hope things aren’t too bad for you at the moment?

Take Care, my very best wishes,

Nina

Hello Nina,

Glad to hear Biotin is working so well and anything that allows you to take one less drug must be a good idea. I am actually rather pleased with Biotin myself, as the latest batch has definitely calmed down my bladder a fair bit and will be sticking with Pure Bulk in future.

I hope you get an answer to your perfectly reasonable question and the scan results next week are positive.