Sarcomatoid Mesothelioma

Hi

Sirry to hear your news. My husband was diagnosed in June 23 with Epitheliod Mesothelioma. It is devastating news when you get it.  Sorry can’t help in terms of trails as there were none available - my husband was offered immunotherapy which they have just stopped as it wasn’t improving things as they hoped, he is due to start Chemo in the next couple of weeks. He has is own business & is still working he feels like if he stops he will just give in.

Hope someone can answer your question about trials.  All the best to you & your husband.

Thanks so much for replying....I feel devastated and alone as this is all so mew to me....I don't know how to " be" around my husband, as my instinct is to try to make him rest,and he doesn't want tstop.....wishing your hubby all the best with the Chemo

Thanks so much for contacting me....I feel so alone and have no idea about how to support him....treatment starts in May,on one arm of the trial...we don't yet know which arm....he is carrying on at the moment as iif nothing is wrong, which is good for him....so I have all my fears and tears in private.....still in shock, I guess....I really hope that they can help your husband to improve....thinking of tlypu xxx

Oops....I have replied to you twice now....shows where my mind is at.....xx

No worries - I know exactly how you feel.  My husband was admitted to hospital yesterday - taken in on blue lights querying sepsis - turns out he has a really bad chest infection probably due to weaning him of the steroids.  If happened so quickly he was fine on Friday we were out with friends.  It’s frightening - hoping they can get him sorted & he can start his Chemo.  The only problem is he was taken to our local hospital & not where he gets his treatment.

I will send you a friends request - you can contact me whenever you like if it’s just to get things of your chest, 

Live to you & your husband x

Hi VG, very sorry to hear of your husband's recent diagnosis.  My husband was diagnosed with sarcomatoid mesothelioma in July 2022 just after his 70th birthday.  Up until that time he had been completely healthy, playing golf regularly and hill walking without problems.  Unfortunately he was already stage 4 when his biopsy was done so trials and immunotherapy were not an option for him..  He underwent a couple of rounds of unsuccessful palliative chemo in the hope of giving him a few more months, both of which resulted in infection and did not slow progression of the disease.  However,  I am sure that if a trial was available to him he would have jumped at the chance ....there is always hope.  

As you say, if is devastating news and I cried every day from diagnosis.  You just have to take one day at  a time and be led by how they are feeling and what they can manage.  For us it was small things like seeing family and friends for short periods, trips out for coffee and fish and chips at the seaside.,   I feel your pain and feeling of isolation.  It is an evil, painful disease.  Sadly Kevin passed away three months after diagnosis.  It has now been eighteen months since I lost him and I still take one day at a time with the help of my  family and friends.

I hope your husbands trial goes well.  Thinking of you. X

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