Treatment

Hi Mrs B E J, I’m KT I’ve had lots of Pembro over the last 5/6years and everyone’s reaction is different, I haven’t suffered the side effects you’ve had, but as the regularly checked thyroid and liver function I couldn’t help but look up on the NHS site at one time what they might be looking for. I can’t tell if things will settle down but I’m hoping the meds they have given you are for that purpose. I have found my nurses encourage you to phone mid consultation if anything if troubling you and not to wait for an appointment, they can then use the appointment to check if what they’ve advised has worked. I know sometimes with me I want to wait to see if it’s a one off or a regular thing. I’m off Pembro now and on a different treatment, I hope someone pops in with their experience. I’ve noticed SED76    posting about her hubby on Pembro recently not with a puffy face but with puffy fingers, I hope the rest of the year goes by less eventfully for both of you.

Thank you for replying so prompt. The hospital and team I am under are fantastic , I had a mole removed in July from my leg, and after having it removed found out it was a grade 2- 3 melanoma. Well after , lots of worry , scans ,2  lymph node biopsies more ops on my leg , everything came back as ok so far , but said that I should have this treatment as a just in case something has escaped.  I am a pretty positive person and at 49 think iv been lucky , I was told that I could have a few bumps in the road , but they could be sorted if need be . I think my problem is I'm such an active person ,and hardly sit down , I'm very rearly Ill, so think iv got to take this in consideration, and rest when I need too , and have faith I'm in good hands . I feel iv been lucky , so going to be strong and get through these odd feelings, hopefully not going to be on going and will soon be back to myself. If I look on the bright side I only have 9 or 10 treatments left

Hi Mrs B E J,

Just thought I'd add my experiences with the lovely Pembro!   I'm on my 8th dose this coming Monday (I have 200mg every 2 weeks for a year) and so far it's seems to have caused me very few issues

Like you I'm an active person and have kept going on my alottment, helping in a charity shop and walking round the great island where I live but in the last 5-6 weeks I've been feeling extra tired so I sadly have tried not to do so much and it's not easy. Just a tiredness that feels heavy, I have to lie down!

It's a small price to pay if it kills off these blasted melanoma cells though.  Take care ️

Thank you for your reply . You are so right , as long as it can do it's job I will get on with it , feel so lucky I have had this opportunity to have this treatment, on a plus side had a phone call of my nurses yesterday, to say my liver problem is setting down So hopefully things will be ok . Take care and keep thinking positive

Hi Mrs BEJ,

Side effects have come and gone for me; they can even occur after treatment ceases. Last month after my pembro infusion (18 months since starting), I developed my first bout of diarrhea. It was managed with Imodium and a steroid taper, and finally resolved after 16 days. I have been extremely fatigued since then. I guess my gut bacteria needs to get back to normal. Other side effects are arthritic fingers, a short lived rash, continual itchiness, insomnia, and weight loss. 

Best wishes as you navigate your treatment! 

Thank you , I'm trying to keep an open mind about it all. Iv found in the last couple of days my necks been a bit stiff and hurts when I move it, but find paracetamol helps .

Hi Mrs B E J,

Glad to hear your liver is settling down. Mine plays up sometimes too with one particular enzyme which when I have another blood test a week later is absolutely fine!

One correction-- I have Pembro every 3 weeks not every 2.

I was going to start on 3 weekly then if that went ok go onto 6 weekly but my oncologist said she had a couple of patients have bad side effects so she's being cautious and keeping her patients on 3 weekly doses instead of doubling up the dose every 6 weeks. I'll do whatever she says!  Would your oncologist consider treatment every 3 weeks at 200mg?  I'm going to check the NICE guidelines for dosage.  

I think that maybe if you have liver or kidney issues then perhaps the puffiness  could be due to that? I hope it settles down soon for you. Take care x

Hello , had my bloods done again on Wednesday and they said liver settling down nicely.The puffiness does seem so also going down, so hopefully this, as you said is linked to liver . Think now they want to make sure I'm on the right dosage with the thyroid tablets ( I'm on 75 mg) . They have suggested to take vitamin D for the fatigue, but that also seems to be getting better , along with my sense of taste . I have a telephone consolation next week , so hopefully things are all going good . My oncologist did say at the start of my treatment, if I don't have any bad complications in the first couple of does , I should be ok , so now things seem to be settling down I don't feel so worried.  Glad to have people to share my treatment journey with .

Hi, like you after my husband’s 2nd treatment he felt quite unwell, not his thyroid but his renal gland that supplies a hormone called cortisol so put on medication to sort that out. Since then he has had very few side effects. We’re about to have 7th treatment and he has been complaining of a sore neck, who knows whether it’s connected to the treatment. Hope things go well for you.

Hi my 3rd treatment seems ok so far , I also had an aching neck last week but found a heat wrap sorted it .I'm feeling alot more positive about my treatment now , hopefully nothing more serious pops up . Please send your husband my regards .