starting Immunotherapy

I really wish that you have a good outcome and a longer life to spend with your family praying for you much love 

Hello Mike 365. I'm so sorry to hear of your mesothelioma diagnosis. My husband was diagnosed with pleural epithelioid mesothelioma in March 2020. He started treatment at the Royal Liverpool Clatterbridge on the B.E.A.T meso trial under Dr Pope in October 2020 (after lockdown), receiving immunotherapy treatment after a few cycles of chemo. He's STILL HERE and the cancer is stable thus far. He has experienced all the side-effects and learnt a lot about the treatment, so if you have ANY questions, please contact me and I will answer as best I can. All I can say right now is that there IS hope. I'll be thinking of you.

Hello TDD

It is really nice to here such positive news about your husband. I am also under Dr Pope and have my second treatment next Tuesday, at the Clatterbridge centre in Liverpool. Everyone has been so nice there. I have quite a large rash on my legs and some itching but feeling very well and still running most days. Can I ask whether you are members of the Liverpool asbestos support group? They  have been brilliant in sorting out benefits for me. John, from Liverpool Asbestos Group came out to visit us and was so kind and understanding. I will definitely message you with regards to side effects etc. May I express my sincere thanks and very much hope your husband continues to be well. 

Hello again Mike. I and my husband (Steve) live in Wirral so we're not part of your Liverpool group. We had a lot of support from MAVS (Merseyside Asbestos Victims Support) in the early days and now regularly attend the Maggie's Cancer Centre at Clatterbridge, Wirral. I'm sorry to hear about the rash and itching - Steve had the same and it drove him nuts. The best news is your running: my husband uses a cycling machine three times a week, and has done for a long time. Dr Pope indicated that exercise (especially in short, sharp bursts that really get the lungs and heart working) is especially beneficial to the treatment regime, so Steve forces himself to cycle even when he feels lousy. It seems to be helping ... One thing he does experience from time to time is a sharp energy-drop, severe enough to make him lie down for a while. However, these are few and far between and, for the most part, he remains fairly stable. His 6-weekly CT scans have shown that the cancer is stable and has been for about two years now. Another thing is to keep up your calorie intake; keep your weight as stable as possible. I sincerely hope that your treatment proves to be just as beneficial to you - keep on running! Our best wishes to you and your family, Mike, and don't hesitate to contact me at any time.

Good evening TDD firstly many thanks for your really helpful reply and it is really good to know that Steve is still exercising.I had my latest  immunotherapy on Tuesday 28th November, only one this  them but this time it has really affected me I have hot exercised because of extreme fatigue.My eyes hurt a bit, My left hand fingers have  have become swollen and today I have a temperature. My appetite has gone and I just feel very unwell.

I telephoned the hotline today and Claterbridge have asked me to go in tomorrow( Monday). Are any of my side effects similar to Steve. I am really affraid they will stop the immunotherpy.

Many thanks

Mike

Hello Mike. I'm very sorry to hear that you're experiencing negative reactions after your last immunotherapy treatment. Please don't think that you will be taken off the programme: Steve had similar once in the early days and he managed to stay on it - it was probably due to his body saying 'What IS this stuff?' Do you have any pain with it? That's a sign of the drug attacking the cancer. Steve normally gets his bad days around three days after treatment, but it doesn't last more than two days. I sincerely hope that you start picking up soon. In the meantime, please try not to worry as this will make you feel worse. If your fatigue is severe, just take yourself off to bed and let your body do what it has to. Steve says that the hardest thing is trying to sleep when he feels bad, but a hot-water bottle seems to help. My best wishes to you Mike. Hang on in there. Tracey

Hello, 

my husband has just had his 13th immunotherapy treatment.  He has a treatment every 2 weeks.  Ipi & niv.  He has a single drug one treatment followed by another single and then for the 3rd treatment he has a double (both drugs)

The single drig  treatment takes around 3  hours, the double treatment takes around 5 hours.  Sometimes he has anti nausea infusion too, more as a preventative as at the beginning he did loose appetite but as soon as on anti nausea all good, not lost any weight too. 

so far life is good, not really any side affects, doing everything and more ! Also cancer is shrinking by 50percent.  

so we feel very positive, good luck 

Hello Tracey just to let to say we attended Clatterbridge and when I arrived I was ready to roll up in a ball and go to sleep.We then attended the Clinical Assessment Unit, the  nurse qsked us how long I had, had a temperature we a answered around 11 hours. We were gently, but firmly  told we should have reported it late Sunday as there is real danger of sepsis, so fully understandable but slightly funny us as we both use to be teachers but it was us being told o off

After a though  examination, a battery of blood tests, an ECG and infusion of antibiotics and lots of tea, biscuits and sandwiches all came tests came back okay but with signs of infection so we were very relieved.

So thanks Tracey for the pep talk this morning as I had felt  quite fed up. 

Yes I do have pain and I somehow hope that it  is the is the therapy fighting the Cancer

I should add my wife Patricia and our four grown up children have so loving. I would hate to face this on my own 

I am feeling much better tonight but will leave  the gym for  couple of days 

I really hope Steve and yourself remain well

Thanks once again Mike

PS sorry for the rubbish spelling, I can't get use to my Amazon tablet as it keeps trying to add words, etc well thats my excuse anyway!

Hello Mike. Gosh, you had a time of it in the assessment unit, didn't you? I must admit that Steve had a high temperature in the early days and I had to FORCE him to allow me to take him to hospital. He had all kinds of tests and at one point a doctor even asked me (in front of Steve!) if he had signed a DNR ... there wasn't much wrong apart from a slight reaction to the drugs. It's so worrying, but you did the right thing getting checked out. I do feel that your symptoms are very similar to Steve's when he first started but - and here's the main point - next week he is having his FIFTIETH treatment, so please don't think that this is how you'll feel every time. Just hang in there as best you can. I'm glad you have the support of a loving family: it's so important. Steve and I don't have children so we're pretty much on our own and it's tough. I don't know how Patricia feels, but I was more stressed out than Steve. I do hope you both stay strong and I am always here for a chat (or a rant!). Take care both, and we'll be thinking of you. Tracey

Hi Tracey, how many immunotherapy treatments has you husband had ? My husband  has had 13 so far with no side effects as such.  I’m just wondering how many you can actually have.

Thank you