Mesothelioma

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

Not sure what happens next

Marhen
Posted by

Was on here 18 months ago when my husband was diagnosed with Mesothelioma.   He had 6 sessions of chemo, it was like a miracle 

as the tumour reduced dramatically.  A couple of months ago he was getting breathless again, so they fitted a drain again.   The consultant decided to give him Chemo again.  He only had 2 of the 6 and had a CT Scan.  He has been taken off the Chemo as the cancer has spread.   but came out of the consultants room in total shock as they can,t offer him any further treatment. 

Think we were in such shock couldn,t ask further questions and weren,t told what happens next.   It all seems surreal as he is in no pain or discomfort and is playing golf 3 times a week.  

We have come away for a week in the Peak District to have some us time as we don,t know what the next stage is.   I know we should have asked at the time. Has anybody had this happen to them  

latchbrook
Posted by

Hi 

I was sorry to read that your husband's cancer has spread and that you've been told that they can't offer him any further treatment. It must have been a great shock to you both.

Although I'm not a member of this group I noticed that your post had gone unanswered so thought I'd suggest that you post your question about what happens next in ask a nurse. The specialist cancer nurses aim to respond within 2 working days. Another option is to give your husband's CNS a call on your return from holiday as she should be able to talk you through the next steps.

I hope you had a lovely time in the Peak District.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Marhen
Posted by

Thank you for your answer we are still away and have been getting plenty of walking in,  which is what makes it harder to take it all in    We,re not seeing the oncologist for two weeks.   Will ask the nurse.  Thanks.   

PollyJack
Posted by

Sorry to read your story.

we have been given the same news today but the hospital are now instructing a community Macmillan nurse who will get involved in pain management etc - maybe worth asking if this will happen for you. 

Enjoy the rest of your break x 

Polly
Marhen
Posted by

Thank you Polly,sorry to hear you are going through the same thing. we weren,t given any information like that.  In all of this he has never been in pain with it.  Is still playing golf.  People question whether he is ill or not.   As he looks and feels very well.  The only problem he has is with the soles of his feet not got much feeling there,   Started after his first Chemo.

Homeward bound on Saturday,,  see if there,s anything in the post.     X

pottermouse
Posted by

Hi Marhen

Sorry to hear of your husbands illness my husband also was diagnosed with mesothelioma last February 2018, and he was told there was nothing that could be done for him, we searched everything we could about this cancer and found a surgeon in Leicester who was able to offer the operation to remove all that he could, this was done last May and up until November all was going well with clear CT Scans, but then it started to grow again and he has just started Chemo and has had two so far, but he's not doing good. he has become very breathless and cant get his breath at times, he's gone from mountain biking and wind surfing to being not able to walk more than a few yards without having to rest. Not sure if its the chemo doing this, no one has any answers.

If this doesn't work we are going back to the Oncology department at the Royal Leicester Hospital where they have expert consultants offering other treatments if you google Professor Dan Fernell and see just how much work he's devoted to Mesothelioma, and you can contact him direct.

Not sure where you are in the country but we are up in Cumbria and the NHS up here is not good, so we are willing to travel anywhere there is to get whatever anyone can offer.

Don't give up hope of getting more help and don't let anyone tell you there's nothing else.

enjoy your break away and go home with energy.

very best wishes x

Marhen
Posted by

Hi Sorry to hear your husband has Mestholiama

Henry started having problems 18 months ago, came home from golf  a bit out of breath,  dr,s sent it up to hospital,  for an X-ray Over a course of 3 days he had 4.5 litres fluid drained off.  By the Friday he was in The Royal Brompton Hospital in London, for a few days where the pay did a biopsy found the cancer and he came round with a drain fitted which he had to drain every few days .  He felt good started playing golf again.  Started him on Chemo 6 sessions every 3 weeks.   Reduced the tumour immensely .    Just before Christmas we went on holiday abroad few days before we came back Henry could feel the fluid  building up again,   The Ct Scan showed the cancer had spread to his chest so they started another session of chemo but after 3  the Ct Scan showed it wasn,t working, so they took him off it. We have another appt with oncologist in 2 weeks as he was going to look at any clinical trials that our going on at the moment

He,s had another drain fitted and is draining about 300 mls a week. 

so it’s just a waiting game.  It’s so unreal as he,s still playing golf, we,ve done a lot of walking this week, but he can,t wait to get back to Golf on Tuesday. the break has done us both good. . 

We live in Wiltshire 

Marhen
Posted by

Hi Polly sorry to hear about your news. One thing we have been lucky with is Henry has had no pain with his.  The only tablets he takes are blood thinners as during all this he developed a blood clot in his leg.  

I know I am finding this all strange as he,s fit and well still playing golf, they stopped the 2nd set of chemo as it was attacking the cancer that has spread to his chest.  I suppose there,s different strains of it.  I don,t know .   Good luck with your problems and hope they can keep the pain at bay.

Heading home tomorrow, . Lovely to go away but lovely to get home xx

PollyJack
Posted by

Yes definitely make the most of your time while he feels well.

we were out celebrating my birthday and the following week Dad became ill and it’s just been a blur since. 

I think it had been coming on for a long time though, he’d been having pain at night but put it down to the mattress!  Hindsight!!! 

Hope you’ve got home to a letter in the post! 

Polly
Marhen
Posted by

Thank you PollyJack.   Sorry to hear about your Dad.  It’s easy to put pain down to nothing to worry about..  are they keeping his pain under control.

Going by what every one has been saying we have been relatively lucky as Henry has been. Pain free.  Wasn,t his best while going through Chemo and it has affected his feet,  not painful but not a lot of feeling in them. 

Had a lovely break away,did a lot of walking.  He has an appt with Oncologist for the 12th April,  so we,ll see what he has to say.  

PollyJack
Posted by

Glad you have an appointment- gives you time to get your thoughts and questions ready. 

Dad is on slow release morphine and liquid for quick relief but  Mum has said he’s taking more. 

Feeling helpless to be honest. He seems to be struggling to get food down - I’m just going to ask about that in the group. 

Enjoy the good weather and fresh air x 

Polly
Sky is the limit

Hi Marhen, sorry to hear that if it helps ask the oncologist if he can enroll him for a New clinical trial called atomic meso that's what my partner is receiving but before you do please do a research about it. It looks promising. 

I wish you the best of luck. 

Sky 

Marhen
Posted by

Thanks Sky  we went the other day and because he,d put on weight, playing golf  and in no pain,  they were quite happy didn,t mention the clinical trial as Henry wasn,t interested.  I suppose because he,s feeling so well,  he wouldn,t do anymore Chemo. So we,ll just let nature take its course.   He,s 71 now, we,ve had a great life,  my only hope is he is still about at end of Sept for our Golden Wedding. 

We are looking at a cruise down the Rhine,  but dependent on whether he,ll be able to fly because of the fluid that he is draining off each week.  I have to go with his wishes. 

Best of luck with the trial and your partner.  

Margaret.