Dad diagnosed with Mesothelioma

I was diagnosed with pleural mesothelioma in December 22, I was at stage two and was lucky enough to offered an operation to to remove the pleural from my right lung, heart and diaphragm to get rid of the disease.

It was successful for nine months , then after the fourth scan it showed signs of returning so I was put on a course of immunotherapy, 18 cycles three weeks apart and I will be having my twelfth cycle thu

 Malpas  so sorry you are experiencing this awful illness.  Wishing you well with your next cycle of immunotherapy.  Do you have any advice I can pass on?  Have you had many side effects from immunotherapy?  Thank you so much for responding.

Sorry got called away, having my twelfth cycle Thursday 27th march, so far it’s working well, my cancer has not grown any larger.

I would like to tell you that it gets easier but I have gotten used to having the disease and I live from day to day and try not to expect too much.

The worst part is that I can’t do much anymore, as soon as I try to do something I get tired and short of breath and have to stop, I have been active all my life and find it difficult to let someone else do all the work.

You do get used to living with it so in a way it does get a bit easier.

Hello, I’m sorry your Dad is going though this. I know many patients have had success with Immunotherapy. Even if it didn’t work for my husband, I can say he tolerated it very well and had no adverse effects. Good luck and sending hugs full of empathy 

So sorry to read about your dad my dad was stage 2/3 when he was first treatment given immunotherapy. it does work well for about 2 in 10 sadly for my dad it orogressed into his abdonen. he then went on to chemo but that didnt work either he lived exactly 12 months from symptom onset to his passing. everyone responds differently though best of luck to your dad xx

I hope treatment goes well for your Dad, immunotherapy can work really well with the epithelioid type, there are side effect s but how severe these are appears to affect people differently  and some people have done brilliantly . Unfortunately . It didn’t work for me but my type was biphasic. , I’ve just finished some chemo which has helped, I’m so grateful to have another treatment option.

I can understand your shock, especially having been through treatment yourself, it must feel overwhelming. I’m a year on since diagnosis it took time following the initial  diagnosis but as a family we have adjusted and actually life has carried on .I found talking to someone through Macmillian helpful and the same support was offered to my family .

I really  hope treatments goes well for your Dad xx

I don't have any advice to topic creator but wondered what people might be able to say to me regarding this topic name, my dad was diagnosed with pleural Mesothelioma very very early via routine scan for being previous smoker, ive no idea of the stage etc only that the scans showed it to be 1cm radius, they first said it want a mild form but that soon changed to being aggressive type so my family discussed treatments, re had hoped to have got on a research project Proton bean therapy, but that didn't happen, so my parents agreed to try a double cocktail of immunotherapy, which he had 2 sessions of and the side effects at least for him were severe, but scans showed it had halted growth so we were at a srahe of hooefullness.

Then infections came along and made him more ill and the immunotherapy stopped, he had 3 emergency visits to A&E as he was violently ill at points so he spent about 5 months I'm hospital in multiple visits with chest drains etc etc. But he was sent home after the 2nd from last visit with prescription co-amoxaclin a common anti biotic along with steroids etc. Then 2 weeks later he was crippled with illness again plus abnormal urine etc. So back to a&e, this time the diagnosis was antibiotic toxicity tland had literally destroyed his liver now he's jaundice Alan's has to be cared for all day every day plus hospice doctors as his physicians, seems he was one of the unlucky ones that had severe side effects from antibiotics.

Now seems from having a fairly good outlook for catching the vpleural Mesothelioma early to how very little time left from liver failure from anti biotic toxicity.

So just thought my story would stress how important it is to compare quality of life to longevity gained through treatment. 

For my own queries is I hear him coughing during the night now which is very upsetting, we have over the counter cough mixture, but I think prescription options had to be better surely, so my query is what would others suggest we ask for in relation to coughing fits etc, although getting my mum to actually ask for it is another matter, should ora morph also be worth asking for not only for coughing but for other symptoms as I can clearly tell at times he's not comfortable but unfortunately since the liver issues he's unrecognisable. 

Anyway thanks for reading, may provide some assistance from someone experienced as family member but as for the last parts help for myself 

Hi, sorry to hear about this situation.,i my self have exhausted all avenues of treatment including immunotherapy now just making the most of my time. I cannot believe you are only using over the counter cough relief snd not even been given oromorph ( tske it with paracetamol even better ). Somebody needs to get on the case here, you shoukd have a team and oncologist you can get on to. If you dont ask you dont get sometimes. I talk to my team once a week !! Please, get on the phone !!!

Sorry mate decided to move to it's own thread as others may find it easier if it could give different opinion etc

community.macmillan.org.uk/.../my-experience-with-my-father-and-pleural-mesothelioma-caught-extremely-early-but-unlukily-antibiotics-toxicity-in-liver-has-meant-he-s-got-not-much-time-left-compared-to-if-hed-not-had-any-cancer-treatment-moved-to-its-own-th