Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Advice on delaying chemo

Pom19
Posted by

Hi.  I have recently been diagnosed with epithelioid pleural mesothelioma. Had drain, talc and biopsy.  Last CT scan end of December. Told it is contained in lung and not spread.  Been offered chemo next week and informed briefly about Mars 2 trial.  I am thinking about delaying chemo as I feel ok at the moment, just have an annoying cough.  My question is has anybody else delayed their chemo.  I have another CT planned in 3-4 weeks and would like to see results first to see progression.  Worried though if I wait the mesothelioma will have spread. Oncology sad it was up to me but couldn’t give me advice either way.

Many thanks

Terry

pottermouse
Posted by

Hi Terry 

Sorry to hear your news, my husband scan was also given no advice as when to have chemo, but he wanted surgery to remove it so we had to find a surgeon who would do this  and we had to travel to Leicester for this that was last May, but we have just found out that its showing signs of coming back so we are now looking to get some chemo. Like you my husband was very fit otherwise would not have had the operation it's not something to do lightly, but I don't think waiting a couple of weeks for the next CT scan will make much difference. We wish you well and take care and keep fit. 

Barb x
Pom19
Posted by

Hi Pottermouse.  Thanks for your advice, nice to talk with someone who has been through this.  Hope all goes well for you.

Terry

PappaChappa
Posted by

Hi Terry,

Sorry for your diagnosis, I hope it all works out for you. Try to stay positive and make full use of the pier support here and elsewhere.

As for advice, well that's a very subjective and personal choice, one that people are usually very reluctant to offer advice on for fear of giving you a 'bum steer'. That said I'm happy to share my experience, but that's based on me being 54 at time of diagnosis, and I was very fit at the time. You don't say how old you are or how fit? Both can have a major bearing on people being able to offer you personal advice.

Like you though I was diagnosed with the same Meso in December 2016 and had almost the same initial treatment, except the talc. They wouldn't do it due to the continued fluid build-up which required a drain to be left in for 24hrs post po.

I had 3 cycles of the typical duel chemos but was scheduled for 4.  At the end of 3 cycles I was rough and not in a good place, but that was due in the main to a bout of pneumonia between 2&3, which required 4 days in hospital with  an IV drip of antibiotics. It took me about 8 to 10 weeks to feel anything like my normal self, and to be honest there was very little change in my CT scans results. So perhaps that answers your question, at least in part.

However, one of the key things you'll need to have a think about it what impact delaying any treatment may have not just on your disease progression, but also your ability to progress to other treatments via trails etc., many trials require you to have undergone some 1st line of treatment first. My suggestion is talk to those who deal with it daily, e.g. one of the Specialist Nurses (details here) they can offer you some sound advice and help lay out all the possible options and implications of your intented path. Hope this helps, stay strong.

PS, I went on to do a 6 month trial with a chemo / immuno drug combo and generally tollerated it well, but did have to have my chemo dose regularly adjusted each time.

Regards,

John

Pom19
Posted by

Hi John

Many thanks for your reply, I an a reasonably fit 71 year old, still working at my own company, thanks for the advice

Regards

Terry