Adjuvant RCC Treatment

Hi Mmum,

I've having Pembrolizumab as an adjuvant treatment. I have it intraveneously every 6 weeks. The first 4 treatments all was good.

Then just before christmas i got a very itchy rash come up wrists and inner forearms. On my inner thighs towards my knees. And on my feet just below my ankle bone. I had my 5th treatment and it was getting itchier, especially at night. After visit to pharmacy i was advised to take piriton and buy some hydracortizone cream. It worked quite well but oh boy did it make me tired. I was falling asleep all over the place.

I went to pharmacy for advice just to tide me over until i had a planned phone call consultancy from my cancer team.

The call from consultant on thusday jan 12th meant her prescribing steroids and telling me it'll be ok. Well the tablets i have to take are 5mg and i have to take 10 all at once every morning for 5 days the decreasing doses every 5 days down to the last 5 days being 2 a day.

Already the itching has abated quite a lot. Such a relief.

That's the only side effect i've felt so far. And i wonder if the fact that i suffered a heavy flu at the start of december, as did my wife, that laid me so low.it allowed the side effect to take hold where it may not have without having flu. Who knows.

Hopefully this will be useful to someone put on Pembro. As there isn't much info from the nephrectomite angle.

All the best to you Mmum....Del.

Hello Mmum,

I've just joined this group so hope I  doing this right. I'm going to be receiving this adjuvant therapy you write about.

I had a radical nephrectomy 5 weeks ago and pathology confirmed it was Grade 3 clear cell renal cell carcinoma ( Leibovich score 5). As I understand it from the oncologist that score means I'm at the top end of intermediate risk of recurrence. With scores of 6 and above being at high risk and scores 1-3 being at low risk. The pathology categories define the risk of recurrence I think.

I'm due to start adjuvant therapy (Pembrolizumab) in 3 weeks. Is there anyone in this group currently receiving Pembrolizumab as an adjuvant therapy?  I would love to know more about what to expect while on Pembrolizumab. I'm trying to work out if I'll be able to continue work or will I need time off around treatment cycles. How have others managed? I would love to know how people have managed work and kidney cancer surgery and treatment.

Thank you in advance.

Living Hopefully xx

Hi living hopefully,

I've been having Pembrolizumab as an adjuvant therapy since october 22 i think. I've had 5 lots anyway. 6 weeks apart. The first one knocked me out a bit. But that may have been due too the fact that the day after my first lot we had a day on the beach on a very hot day and i think i dehydrated a bit. Because since then i've had no side effects until last month when i strted to get a rash. Very itchy. 

With a view to work. I haven't worked as my job Bricklayer/builder is a very physical one and i have still been getting worn out with physical work. I have done a lot of walking and some odd jobs around our house and garden. And just these last few weeks i've decided i'm ready to get back in saddle and start taking on work again. I'm going to do it on a self employd basis so i can choose how much i do. Though i do now feel i'm very nearly back to full health. I will have to give myself time to build up my work stamina so to speak. I had my nephrectomy 11 months ago.

The tiredness (heavy at times) that has been with me since nephrectomy seems to have left me now. So i guess my body has adjusted to the fact that i'm a kidney down.

I do feel like i've been given another chance. (God bless the NHS) And Dr Ahmed. And i'm quietly determined to enjoy things i do. And do things i enjoy. Simple things. Nothing amazing.

Don't know if this has helped at all. But it's dome me good....lol.

Good luck...Del.

Thank you Del, your reply has been really helpful.

I think this:

Deloo said:

quietly determined to enjoy things

Is such a good idea, I'm going to borrow it from you. Some days it will not be so easily done, but I'm going to keep trying.

Good luck with everything Del. Hope your remaining Pembrolizumab sessions have no side effects and go smoothly...

Living Hopefully xx

Interesting reading thanks Mmum, was just browsing and spotted this Article  My treatment will consist of Lenvatinib (daily) and Pembro every 3 weeks. Still not sure when. Got two bone scans next Wednesday, so guessing after that I'll be off to London to see what happens with my leg. And then start the Immuno treatment, or have the Kidney out. I really should do better with asking questions lol I have complete confidence in the Consultants, so just going along with what they have planned. (Mitral valve repair 7 yrs ago) after that everything else happening to me, is a walk in the park. It's not obviously, but just my approach with dealing with all of this. X