Immunotherapy treatment

I’m classed as stage 3 B having had secondary melanoma in the groin.  No other cancer in lymph nodes or surrounding tissue thankfully. I was offered immunotherapy treatment but given the possible side effects, U decided to pot for observation and regular scans.  Spoke with my GP who wasn’t happy to hear that I wasn’t going to have the treatment. I was told that if the cancer did come back, it could metastasise itself onto numerous organs. I changed my mind on hearing this. Had my first treatment over a week ago abd have been perfectly fine since. I also met a lady who was having her final treatment and had never had any side effects that concerned her. This was the first time I’d met someone who has the same surgery as myself and was having the same treatment Pembrolizamab. They call it PEMBRO.  

Sometimes we over think and worry too much and that’s understandable too. I can’t believe how good I feel now that I’ve started the treatment and know I’ve done the right thing for myself.  
Immunotherapy seems to be the new hope for treatments for all types of cancers and the feedback from people I know is excellent and SO encouraging for all of us. 

it’s not easy but if we could all try to stay positive and believe that we will do well, I honestly think that helps with our results. 
Wishing everyone on this journey the very best of good luck. Xx

  • Maurice, your message is SO heartening and a joy to read. I’m on Pembrolizamab. Only had one so far and due to have my next one at the end of next week. ( 6 weekly). The only side effect I’ve experienced so far is a slight itch on my shoulders and chest. Nothing to complain about. Absolutely no tiredness at all. I know it’s early days but I’m staying positive. 

    With regard to the other 2 posts re vomiting, I’m wondering if a good high fibre diet would help.  It’s very important to have a healthy gut. I’d recommend drinking probiotic drinks to see if this helps. It’s a ghastly thing to live with and my heart goes out to anyone who has it. 

  • In September I had a radical kidney nephrectomy (kidney removed) the margins were clear, but it’s 9 out of 11 on the Leiberwych scale, however you spell that! I’m due to have a full scan on Monday, as previous scan showed something on my chest, the doctors didn’t think it was cancer, looked like inflammation. Hopefully the scan on Monday will be clear. My immunotherapy will also be Pembrolizumab, Pembro. Not looking forward to having it, but glad you haven’t experienced horrible side effects. I feel glad I’m going to have this further treatment, as it will hopefully protect us from cancer returning. Following a visit to hospital on 1st November I received a follow up letter on Mychart. The doctor explained how clever cancer is, it tries to fool the immune system that it’s not harmful, Pembro breaks that cover down, so our own immune system can destroy it. That’s not the actual wording but it was good to read. Good luck to everyone going through this, sending hugs xx

  • Like you, scans showed up various concerns and I was sent to see a gynaecologist and then a urologist.  Thankfully, nothing sinister was wrong. Then sent for a PET scan, something showed up in my thyroid. I had to have a biopsy ( no big deal, local anaesthetic). again, I was fine. Such a massive relief but my son in law said I was lucky to be getting a top class MOT.   Looking at it like that, I saw te positive side. 

    Treatment.  Initially, I refused the treatment but my GP left me in no doubt that I’d be making a massive mistake not taking it. I returned to the hospital and had another very lengthy discussion with my oncologist. I’m so thankful that my mind was changed. I met a lady who was just completing her full treatment and she told me she’d been fine. A few minor hiccups along the way but nothing to write home about. 
    Please stay positive.  Go on a healthy gut diet. Seeds on your breakfast cereal or anything else. Probiotics. Lots of fruit and vegetables. Steer clear of white bread and white rice. Brown bread and brown rice are better for us. 
    All the best. You’ll be fine   We must be thankful that finally there’s hope for all of us.  

    I’ve been a volunteer for Cancer Research UK for many years and I’ve seen and heard of all advancement's that are saving the lives of so many of us. It might help if you offered to help out in one of the shops or by donating things you no longer need All this money is used research and more. 

    We must all try to do our bit to fight for our lives. Xx

  • I am glad that you find my post helpful and as for side effects I experienced none to speak of, just got very tired after the first few infusions. Immunotherapy is a very elegant solution if you respond to it. As Cabbages1 touches on, the cancer cells mimic friendly cells with proteins which is why your immune system doesn't kill them. Instead it binds to them thinking they are friendly, Pembrolizumab takes the brakes off by closing the receptors which enables the immune system to now recognise the enemy and destroy it. All I can say is I was so happy to be given the chance with pembrolizumab when it was still in the experimental stage and not yet available on the NHS.

  • I'm glad you got it, Maurice. I hope your immune system keeps fighting it for good x

  • That’s very good to hear you didn’t experience bad side effects. I’m having my first treatment of Pembrolizumab on 19th November. It’s daunting of course, but I’m optimistic now. Hopefully my cancer is all gone, as my kidney was removed and had clear margins, but it’s an aggressive tumour so I’m glad to have further protection with immunotherapy. Hopefully my CT scan on Mon 15th November is ok.

    We’re lucky this treatment is available to us all. Good luck, stay well. 

  • As far as my infusions went the worst part was when they put the iv cannula in (as I am not fond of needles) but only a mild discomfort, then I could eat, drink watch tv or even dose off during the session. Good luck with the scan and getting the pembrolizumab will a breeze.

  • Thank you very much. Will post again after my first session.

  • Hi Rose

    I had not considered how important diet is especially when receiving immunotherapy to guard against some of the side effects of treatment. Your post is invaluable. Healthy gut bacteria to help prevent colitis and diarrhoea, plenty fibre to prevent constipation. Plus to try avoid omeprazole and antibiotics I think this is to help overload of your liver which can come under attack during treatment. My Bilirubin levels are high as Ive just had a course of amoxicillin for an infection post surgery. Plus I take Naproxen for gout and Omeprazole to counteract the acid caused by the naproxen  plus paracetamol for pain relief none of which are good for your liver. I have stopped drinking alcohol to reduce the load on my liver and hopefully will soon be able to dispense with the tablets.

    I agree with you how lucky I am to have been selected to receive this treatment, at great cost to the NHS, so far I have no no side effects other than fatigue.

    Ed