Up and coming treatment

Hi Malpas - my husband had 9 sessions of immunotherapy - it didn’t make him sick but he did have some problems with diarrhoea.  It didn’t work for him as the tumour grew.  He had his first chemotherapy on 24 May - Pemetrexed & Carboplatin, unfortunately he ended up in hospital on Sunday with Acute Kidney Injury stage 3 - they say they can’t be certain but they think it was the chemo - he has just been discharged today.  They are going to carry on with Chemo but are going to reduce the dose.

You could sail through immunotherapy & have good results everyone is different.  My husband was never given a grade he was just told it had been found really early but he was never offered surgery.  He is under Wythenshawe Hospital at Manchester & they apparently don’t do surgery there.

Good luck with everything.

Thanks Wardyboy, was your husband offered clinical trials? I was but I decided it not for me. It seemed to be very involved with different tests on internal organs, the tests could also damage my organs and make me very sick, I could have chronic diarrhoea, ulcers in my mouth and other not very nice reactions.

plus I had to make notes of how I was feeling every day, down load an app and fill in all the questions every day, some of the tests are 8 hours long and sometimes it’s an overnight stay and at 78 years of age I felt it would be too much for me.

 Contacted them and told them I didn’t want to go ahead with the trials and since then I have had no other appointments and I’m getting worried that they won’t bother with me now.

He hasn’t been offered any trials at all.  I’m sure they will offer you some treatment, the trial you were offered does sound gruelling.  My husband is 68 and was diagnosed in June last year.  He has pain because the tumour is pressing on his top 2 ribs on his right hand side but for now is localised to that area.

I hope you hear something soon and I am sure there will be people on here who have had a much more positive outcome with treatment than my husband.  We are hoping next chemo with reduced dose goes much better than the first.

Take care.

Hi I am very sorry about your mesothelioma diagnosis , my father last month was diagnosed at stage 2/3 and he was just offered immunotherapy which is every 3 weeks for 2 years. This was crushing. The consultant had said surgery was shown ( somethings about a recent mars trial) to have very limited benefit over other treatments. The immunotherapy largely replaces the old way of giving chemo, which can add approx 8 months more to life expectancy. As my dad has yet to start treatment I have yet to share experience yes there are side effects but it’s very individual and not everyone gets the same side effects. The other side of the coin is side effects can be too great or dangerous and treatment must stop. My dad was told a certain level of fitness means eligibility for immunotherapy but if he doesn’t suit it then nothing more can be done. At 2 years it sounds as if the surgery has had some life prolonging effects for you though so stay positive and hopefully further treatments will offer the same Liz 

Hello Elaineyahoo, I’m sorry to hear about your dad, I know it’s devastating to be told you have this disease.

 I was diagnosed in December 2022, and had surgery in February 2023, and had scans to check on its progress, it was nine months before it started to grow again but it was still growing at a very small rate and the professor looking after me was not too concerned.

I started immunotherapy/ chemotherapy on the 30th July and apart from very bad fatigue and shortness of breath I seem to be fine.

Obviously I’m still very concerned about my future and how long I have left but I was told “just go along for the ride “ as worrying won’t change anything.

Im 78 years of age and up until now I have had a very healthy life, I’ve never smoked or drank excessively and worked five or six days a week.

 I worry about my family more than anything else , how will my wife cope when I’m no longer around, and my kids are all grown up with children of their own but I know they will both take it badly when I’ve gone as we are a very close family and it makes me feel bad that I will put them through a bad time.

Changing the subject, have you filed a civil claim for compensation? If you’re dad’s cancer is due to asbestos you do have a case, but I would think you have been told about this anyway.

Best of luck to you, your dad and your family.

Thank you I fully appreciate your family concerns your family sound very similar to mine and we are also very close. My dad dotes on his pre school grandkids. My dad is the pillar in our family. Thank you yes we’ve been approached re asbestos. Wishing you well in your treatment.