Pembrolizumab

Hello Wobbles and welcome to this great supportive group.  I ended my year of Pembro (Pembrolizumab) last August.  It went so fast in the end and I'm missing the contact with the lovely people at the chemo centre.  I was nervous at first, sometimes they let you have a look around visit before you start.  Bloods are done a couple of days before you have the Pembro.  My local health centre did mine then the bloods went to be checked at my local county hospital where I was having my treatment.  I had it on the same day every three weeks. I was weighed, had blood pressure, temperature and pulse done on every visit.  Once they were sure my bloods were ok they told pharmacy I was here and they could make up the drug. The nurse put a cannula in my lower arm and attached me to a slow dripping saline bag. The Pembro came up and was attached, the infusion took half and hour.  More saline to flush it through then cannula out and home.  If I was there at lunchtime I got given a sandwich, tea/coffee/ water was always available too.  The nurse would always try and spend a little while chatting when she put the cannula in. I used to sit in one of those recliner chairs, take my shoes off, tip the chair back and close my eyes. I usually took a newspaper to read but also chatted to others (the others were mostly all having longer sessions of chemo).  I did experience some joint pain in my hands after about three sessions but no other side effects. Some people have 200mg every 3 weeks and others have 400mg every 6 weeks.  No reason for the difference I believe, it's just a preference of the oncologist. 

I hope that helps hon, my first time I was so scared I became incredibly cold and shaky but they were so kind to me. I was also very lucky as there was free reflexology offered at the time so that was relaxing. Sometimes I just closed my eyes and had time out during the infusion.  Take care xx

Hi again, just wanted to say sorry for the long post, I guess I thought I'd make it explicit! X

Alottment lover, thanks for your response as I will likely be starting immunotherapy in the coming weeks and like many have concerns with the side affects.

CMO

Hi not at all it was all really helpful, I appreciate your time.It is good to talk somewhere who has been there, none of us want to!

Like you I am really apprehensive about Wednesday,  but understand that in a few months I will get into the rhythm of it and it will all be reassuring and helpful.At the moment I am resenting every appointment for a scan,blood test etc which is ridiculous but you feel as if all control has been taken away from you.

I hope you are well and recovered x

Hi Wobbles, I think it's natural to resent all the scans and blood taking as it's anger and resentment towards being diagnosed with cancer I guess. And yes it's also about control, you can feel suddenly that you have none and you've entered a strange new world where all is out of your hands including how your body and your cancer will react to the treatment.  

Being diagnosed with cancer has made me rethink a lot of things. It isn't an easy path to tread.  Scary, worrying, frustrating, confusing and saddening.  Important to remember people on here will always be here. Lots come and go but there will always be someone here to listen, sympathise and support.  I've certainly found it extremely reasurring to be on here.  I really hope your journeys are smooth and positive xxxx

Hi my husband has been diagnosed and has has had surgery to remove his lymph nodes in his arm. He has also just had his first treatment of Pembrolizumab.

He appears to be ok but he is not very good at sharing his feelings.  Are there any special precautions he needs to take, like avoiding crowded places. 

Thank you 

Hello Rain and shine, I'm sorry to hear your husband has been diagnosed with melanoma.  It's certainly a strange and frightening time once you get the diagnosis.  A time of such worry about about  effects and whether the treatment will work.  

I can't tell you what your husband should do but the "Ask a Nurse" section may help with medical questions.

I can say what I did though as can others -- I treated myself as a vulnerable person and still continue to wear my mask in shops and on buses even now. I did and still do  avoid crowded places to reduce the risk of any germs. I haven't had covid at all luckily.   I still receive free covid test kits from the government. I tried to eat as healthily as possible, kept active.  I kept the emergency phone number you're given for people having immunotherapy on the fridge and also in my card holder when I was out so if anything happened paramedics would know I was being treated. It's definitely worth reading the side effect symptoms to spot any as early as possible such.  The nurses/ doctors should give your husband some specific things to look out for and he will be having regular bloods done.   As for sharing feelings, that's such an individual thing.  You know your husband best and my guess is he needs a few doses of Pembro to get used to his new way of living before he may want to talk. He may just want to get on with treatment and not talk , we are all different.   If you have questions it's worth joining the group for "carers of people with cancer" as well  where you can talk with others in just your situation hon. It can make you feel less alone too by sharing your feelings.

Sending you both all the best for the safe journey through this xx

Hi Wobbles,  how are getting on? Started your treatment yet hon? X

Hi thanks for the message, one treatment down with no side effects

I have my next tomorrow, so had bloods this morning, agreed to be part of a research trial being conducted via Birminghsn University to establish whether genetics has any impact in terms of side effects from immunotherapy,  let's hope it helps people in the future.Expecting my next scan in June.Feeling a little more positive, it's nice to hear from people on the same journey.

Hope you are foing OK x

Hi Thank you for your response it was really helpful.

Things are so confusing which isn't helping, my husband was given his first treatment as a special to ensure he would be within 12 weeks but was told going forward he would have his treatments every six weeks on a Wed and bloods on a Monday.  The reception were unable to follow this pattern so told him they would notify him of his next appointment.  Today he has received an outpatient appointment for 9th May. Is this usual there are no details and he cannot get hold of anyone.

Also he has now developed a rash on his torso, he has contacted the car team who said use antihistamine