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

Parents
  • I have been offered immunotherapy, Pembrolizumab and have been trying to decide whether or not to go ahead. Side effects seem to quite nasty. However having  the comments here I now believe I will accept it as most people here seem to think it is beneficial. Thankyou.

  • Hi Kingsbrige

    I think you have made a good decision. You are fortunate to be prescribed Pembrolizumab, it is a very expensive drug and it is not suitable for everyone. This class of new drugs can be life changing. There is a long list of possible side effects that you have to be made aware of so that if you get one you can report it to your clinic who can alleviate your symptoms or stop, postpone or reduce the dose. In real life conditions you are likely to only get a few side effects. I am in cycle 2 of immunotherapy with cemiplimab and other than fatigue and mild skin rash have no other symptoms. The therapy has already reduced tumour size and I have a good chance of long term remission. The oncologist is very upbeat about being able to prescribe these drugs as a treatment that actually works with a good success rate. Three of her patients that were prescribed  Pembrolizumab for melanoma have had no relapse after two years of finishing their treatment. A game changer in the treatment of cancer.

    Best wishes for your continuing treatment

    Ed

  • Hi Ed,

    Great to hear all is well. As you know , I was offered Pembrolizamub as my treatment. I’ve now had 2 treatments and am perfectly well. I did develop a rash in my back and shoulders along with prickly heat looking spots all over my  chest.  Consultant prescribed ELOCAN cortisone cream and a large antihistamine tablet which I take daily before breakfast. I’ve noticed the rash/ spots slowly fading which pleases me enormously!!  Next treatment in early January. Every 6 weeks. Planning to spend a month in Spain soon afterwards all being well.  Positive thinking at all times is vital. Onwards and Upwards and most important of all, faith in God above. 
    Hapoy Christmas and a healthy and Happy New Year x

  • Hi Rose

    I am so pleased that your treatment is going well. We started treatment around same time.

    I too was given Elocan cream to use on rash it seems to control it quite well and stops the itchiness.

    Id too would like to get away for a break to somewhere like Spain but my 3 weekly schedule does not permit more than week break.. With an appointment between treatments and a blood test 3 days before. Also I've been refused insurance with insurancewith.com and been quoted a hefty premium £380 for one week with Staysure. So will need to wait until end of treatment or pay Staysure or cover the risk myself, I don't think Spain would accept GHIC card even in an emergency. They usually like to see your credit card before any treatment is given at a hospital.

    All the best for whatever may come our way

    Ed

  • When I had my pembrolizumab infusions starting 8 years ago at a clinical trial I was lucky enough get it all over with on the same day once every 3 weeks. I would have the medical in the morning and and then and when the results came in they prepared the drug, I was told that the shelf life was so short that   if you failed the medical it would be wasted. I would often travel between infusions to take my mind off things. When I travelled I didn't have insurance as it was so difficult to get because of the cancer but took the chance.

    As for Spain, I was there in March and had hospital treatment for complications for a broken leg. The hospital asked if I had a GHIC card as then it would be free, I didn't as I thought that had all gone out the window after Brexit, so I paid for the treatment. Back in the UK I made a claim and today I received notice that it had been successful and will obtain the refund. I now have my GHIC card. Maybe it just depend on which Spanish hospital you are dealing with.

    Incidentally, I had no complications with side effects after receiving pembrolizumab for 2 years. Good luck

Reply
  • When I had my pembrolizumab infusions starting 8 years ago at a clinical trial I was lucky enough get it all over with on the same day once every 3 weeks. I would have the medical in the morning and and then and when the results came in they prepared the drug, I was told that the shelf life was so short that   if you failed the medical it would be wasted. I would often travel between infusions to take my mind off things. When I travelled I didn't have insurance as it was so difficult to get because of the cancer but took the chance.

    As for Spain, I was there in March and had hospital treatment for complications for a broken leg. The hospital asked if I had a GHIC card as then it would be free, I didn't as I thought that had all gone out the window after Brexit, so I paid for the treatment. Back in the UK I made a claim and today I received notice that it had been successful and will obtain the refund. I now have my GHIC card. Maybe it just depend on which Spanish hospital you are dealing with.

    Incidentally, I had no complications with side effects after receiving pembrolizumab for 2 years. Good luck

Children