Keytruda side effects and experiences

Hi

Keytruda  is the brand name, it is more commonly discussed on here under its chemical name of pembrolizumab.  There are numerous and recent threads on here covering the side effects,  which could be useful for you.

I have no experience of this treatment but I am sure someone will be along soon to provide their experiences.

I wish the best possible outcomes for your Dad.

Kegsy x

Hi

Sorry you have had to join us though you are very welcome.

I have been on this treatment since Jan 2017 and finish December 2018 that will be the two years.

Side effects can effect every one so differently , at the start i had side effects but as time has gone on things greatly improved, for the majority of time i have felt quiet good.

Do not get me wrong my joints all hurt, i get tiered , i have itched for the past four months, ha d mouth ulcers, trouble swallowing.

Give it a chance  once your body accepts the drug things will get better i am sure.

I have had real good results from this drug and if given the choice i would stay on it.

Please ask anything if you wish to know any more.

Do not forget to ask your nurse at the chemo unit they gave me different things for my side effects.

Take Care Elliexx

"You Never Walk A Lone"

Hi Ellie I am on my fourth round of prembo the one side effect is the joint pain is the worst dose it get any less or is this it now No pain killers seem to work have told my cancer nurse any advice on how to cope with it would be much appreciated 

yours vontom123 

Hi there,

My husband had his first treatment last week and is also very tired, sleepy almost all day and has zero appetite.

I have read several items on this site which indicate it will get batter, just have to let the treatment and the body settle in!

I'm hoping my husband will start to feel the benefits of the treatment as it's horrible watching him almost waste away before my eyes, and I feel so helpless.

Try to keep positive, I'm sure this is a great treatment, just have to give it time x    

Hi, I just started on Pembro 3 weeks ago, the first treatment had me feeling sick for about 4 days and the second which i had 3 days ago has me in agony with hip, knee and ankle pain which don't respond much to painkillers. I also don't have much of an appetite and have lost about 5 kilos in weight which isn't a bad thing for me as i am overweight anyway. I don't feel sick this time but have had a dodgy tummy since Monday !! One can only hope that the joint pain lessens with time. I have not been tired at all in fact i am having trouble sleeping at the moment but this may be due to the hot weather we are having. Hope all the nasty side effects go away for all that are on this treatment. Lynn 2.

Hi Lynn

Glad you have started your treatment, though sorry you have a few side effects.

At the start i had trouble sleeping but not now even with the hot weather.

Its a side effect, after a time hopefully these side effects will disappear, for the last three infusions i have had no side effects at all.

Had a few at start but they have now gone, though i have to say the joint trouble lingers on.

Take Care Ellie xx

"You Never Walk A  Lone"

Hi Kelc

I am now 71 yrs old.

I was diagnosed with stage 4 Melanoma, spread to my lungs, in July 2016 and was put on a trial of pembroluzimub/Keytruda & epacadostad.

I finished the trial in August 2018, with a 60% reduction in the 2 lung spots. I am now waiting for follow-up treatment, depending on the ongoing effect of pembro. (next scan 18 October 2018).

I only had a disturbing itch on my skin, as side-effect. Nothing else. It seems as if I was very lucky with early diagnosis, effective & very expensice medicine on trial, and few side effects.

At this stage I am nervously looking for follow-up statistics on the longer term healing effects of pembro, which is very slim, due to the newness of the medicine. But it seems to be the best cure for cancer, in general, depending very much on how your body reacts to it. While melanoma is the most dangerous cancer, I am very happy with the extended life it gives me.

Trust your Dad will react good on any treatment he gets.

Godd bless you & your family.

Hi kelci.  I read your notes. My hubby stage 4 lung cancer. Had chemo. Now on pembrolizumab.  Encouraged by your notes.  He was diagnosed in Apr 17 . Started immunotherapy Nov 17. Here's hoping.  Eith everything crossed x

Hi Ellie

Hope you don't mind me jumping into this thread, I've been on pembrolizumab since January this year and hardly had any side effects apart from a bit more tired but for the last 9 weeks I have had a lot of pain in my neck and lower scull. A bone scan ruled out any Mets in the bones but said nothing else. I hadn't really thought it may be a side effect but reading that others had joint pain I am wondering if that could be the cause at the top of my spine. I'm seeing my doc on 2nd October so will ask him. 

Vixter aka (LIVERPOOL FC NUT)

Hi Vixter

Hope you are keeping as well as one can.A side effect of the treatment is joint pain, but our minds do go into overdrive.

It can also cause more pain where the tumors may be.

I have had different pains in my back where your lungs are, i was starting to get a little worried.

On both occasions when getting my ct scans i had these pains, but on getting my results tumors are so small now and stable.

Hope this helps Vixter.

Ask anything you may wish to find out.

Take Care Ellie xx

"You Never Walk A Lone"