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 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

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

Ed,

Take that holiday is my opinion, in the unlikely event of you experiencing side effects that need hospital treatment you will be covered with the GHIC in Spain.

www.nhs.uk/.../

High Ed. I have had my first treatment of Pembro, the next due in a weeks time. So far no real side effects exempt feeling very tired and a slight rash.  I am feeling much better about the decision to accept it now, it feels like it’s going to be ok, fingers crossed. Thanks for your comments.

Just wanted to say thanks for all your positivity. My wife has had a radical cystectomy and whilst there is no cancer on nearby lymph nodes or organs a CT shows possible v small lung node. She is to start Pembro v soon and after reading your messages we are more positive that things will improve and , fingers crossed things can be controlled.

Oh, good luck to her (and you.) My partner's cancer has responded really well to it.

Thanks. I am glad that we have this treatment available now . It gives me hope that one day all cancer sufferers can be successfully treated.

Thank you for your reply. I sincerely hope my message helped. I wish somebody had been able to tell me a similar tale when I and my family were distraught. Looking back, it’s like a jigsaw puzzle, all the pieces now go together but at the same, nothing added up. I’d like to hope that there’s nothing serious wrong with her lung ( like my kidney, ovaries and thyroid) but she’ll be thoroughly checked which in itself is excellent. 
Try to stay positive if you can. Negative thoughts are demons. 
something your wife can do now. Start taking vitamin D and zinc. Start eating a high fibre diet including nuts and seeds.  Probiotics are highly recommended and after researching, I discovered that antibotics are a no, no. I also had to stop taking my reflux tablets OMEPRAZOLE as cannot be taken when having immunotherapy. GP prescribed Pepto Aniseed liquid which is excellent. No white bread or white rice. Brown only.Lots of bananas, blueberries too. I now eat Weetabix or Branflakes with natural yoghurt, sliced banana, blueberries and milk. Yummy!!  Probiotic drinks too  I’m as healthy as a trout and looking wonderful!!

All the best to both of you  I have a darling husband who looks after me so my advice is to open up and chat with friends  Don’t bottle up your worries  x

Thankyou for all these recommendations about diet. We will start on this soonest.

Great advice re talking. Right now we feel like hiding from the World,but as they say a problem shared is a problem halved.

Thankyou for all these recommendations about diet. We will start on this soonest.

Great advice re talking. Right now we feel like hiding from the World,but as they say a problem shared is a problem halved.