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

Hi Kingsbridge,

Apologies, only saw your post earlier when we were out for a meal at our daughter’s home and only now home. 
When I read your message, it made me think how I was exactly the same as you not that long ago. I was diagnosed with secondary aggressive melanoma in April. Never had primaries so extremely shocked. Had 9 lymph nodes removed along with the melanoma in June. Results excellent but offered treatment. Visited an Oncologist who gave me the facts. As I am now cancer free and didn’t have any signs of cancer from the pathology report, it was suggested that I go for immunotherapy Incase there may be any micro cancer blood cells lurking anywhere. I was given the success rate and all the hellish side effects that COULD go along with the treatment.  Within minutes,my mind was made up and I thanked him and refused his offer. I went home deliriously happy. I could now move on with my life and put everything behind me. Hallelujah, thank the Lord. A couple of days later my GP rang me to catch up and when I told him my decision, I knew immediately by his voice that he was absolutely horrified. I was told that if the melanoma metastasised , it could do so in more that one place. I felt a chill run through my body and knew that God above was I watching over me. I immediately messaged the lead on nurse, met with the Oncologist a few days later and started on the treatment that week. You can imagine that I was still uncertain about these side effects but yet again, Gid was watching over me. A lady beside me was having her final treatment. She’d had pretty much the same operation as I’d had. Couldn’t believe my ears when she told us that she’d never really had any side effects other that skin discolouration and a bit of itching. Husband and she had just returned from holidaying in Rhodes. After they’d left to go and enjoy an Indian meal. My husband and I looked at one another with joy and thankfulness.  You’ll have guessed by now that I am a Christian with a very strong faith and knowing that God is watching over me is a great comfort.  I never worry ( sounds ridiculous) I am happy and at peace and thankful that I’m able to have preventative treatment and am receiving amazing care from all the physicians I’ve come into contact with. 
The treatment I’m having is the same as the one you are planning to get. 
If you happen to be taking Omeprazoke for did reply, stop and if you need something, doctor will prescribe Pepto Aniseed / betterment liquid. 
It’s advised that you do your best to have a healthy gut so drink probiotics etc.,   

Please forgive this lengthy message but I would wish you the very best for the future and I believe that our diet is vital along with our treatment   Give it your very best shot and stay positive if you can  I will pray for you as so many people have been praying for me  

Best wishes, Rosemary. 

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

It could be the best decision that you have ever made. I received it  for 2 years without noticable  side effects. Not everyone responds to it but I was lucky enough to and that was 8 years ago.

Hi Maurice

Thank you for the info on using  GHIC card in Spain and that it is accepted, even if you have to pay first then claim a refund. We have not had a break since before Covid due to caring for elderly parents and  now a recurrence of cancer. I feel a few weeks relaxation away would do us both more good than anything else. The fact you have had 8 years remission and no serious complications after treatment fills me with great hope. Thanks for your upbeat reply.

Ed