Mesothelioma

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

Mesothelioma and chemotherapy advice

Chezdouglas
Posted by

Hi Den 

Thank you .. yes you read all different stories we are going to take one day at a time that's all you can do .. it certainly helps being on this forum stops you from feeling alone.


Thank you again take care xx

Hafp
Posted by

Hi all

I've been reading this site for a while but never contributed before. Like the original poster my dad had been diagnosed recently, with biphasic. A massively scary shock initially. Do they say what's causing his pain? My dad had pain initially from the fluid and needing a drain, but they did a pleurodesis which is a procedure to stop the continual build up of fluid (using talcum powder of all things!). They didn't think it would work, but it has. Of course having chemo has also stopped this build up progressing. The first round of chemo was awful, I've never seen him so ill, it was heartbreaking. He was throwing up the whole time, not eating, drinking, sleeping and barely talking, let alone watching TV or anything. BUT he spoke to the Marsden where he's being treated and they were amazing. They gave him an additional anti emetic (anti sickness) drug that apparently costs a fortune, he's on that plus two others and steroids... And the difference has been incredible. Now, he gets a bit tired and a bit nauseous but combats the nausea by eating, constantly! He has one or two days where he prob doesn't go out but he's up and dressed, watching TV and doing things around the house. On the other days he goes out and even drives, while eating constantly! After three sessions and a scan the inflammation/ tumour has been reduced to two thirds of what it was! So for the last two they're reducing his dosage, then it's time off and wait and see. Obviously it's not a cure but it's the best outcome possible because it means time which has been a big relief. We don't want to be complacent as this thing is unpredictable but we're feeling a lot better than we were. We're doing so much together and despite it are having some great times. I get teary occasionally as the thought of losing him is unbearable, he's my favourite person on earth. But I'm making the most of every day, calling him every night whether he wants to speak to me or not! It's obviously different for every person and it's a crappy crappy disease, but we're having a positive experience with treatment at the moment. 

Chezdouglas
Posted by

Hello Daffodil,

I am sorry to hear your husband has been diagnosed with mesothelioma it is so hard for all the family. My husband was diagnosed in May, we were the same very frightened thinking he only had months to live .. after reading other people's stories we are realising that it could be years ( which we are hoping for) my husband is the same can only have chemo..  his first chemo was good not many side effects and we have been able to enjoy going out on day trips just hoping it's the same for the rest of his chemo. We will also be looking into trials have they told you what type of mesothelioma he has? any questions you have  phone your nurse they really are amazing.

I wish you all the best I will be updating on here so read through others experiences,  I know we are all individuals in this but it does help xx

Daffodil72
Posted by

Hello ChezDouglas, thanks ever so much for your reply, I hope your husband continues to feel well on his treatment. And you manage many more days out and happy memories. I will be sure to follow everyone's updates as I do find them helpful and reassuring. Thanks again, take care x