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Mesothelioma

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

Not sure where to go next

sukura
Posted by

We have been greatly let down and limited options NHS. Can I please know the name of the Medical team you use and speak so highly of? Also any immunotherapies and treatments that did significantly work. We are running out of time. Thank you

Bexster75
Posted by

Hi Sky is the limit,

I have just sent you a friend request. I would like to know more about your private immunotherapy for your husband. My father was diagnosed in Aug 2018 and was put on the MARS II trial. He had surgery and chemo. Until recently he had been doing well - the chemo was unsuccessful though and the cancer has since spread. His oncologist has just moved and he's been told he won't be receiving another oncologist. My husband and I are in a fortunate enough position to pay for some private immunotherapy (and oncology treatment - hopefully to reduce his pain) and would like to get some more information. Sadly, without an oncologist he is unable to be considered for a trial, he also has low-grade prostate cancer (stable for over 10 years - will die with it) which also precludes him from many trials. 

Cheers Bex*

fatbouypne2
Posted by

I would look up an expert Mesothelioma oncologist regardless of distance, arrange a consultation probably by phone, confirm suitability for immunotherapy, it works very well for many patients, but has to be prescribed.

Good luck

Pom19
Posted by

My husband has been to clatterbridge  private cancer clinic in the Wirral and seen Dr Griffith who prescribed single immunotherapy treatment. Regards Karen

Jayne53
Posted by

My husband is now being referred to someone at the Royal Marsden who is running trials.  His latest CT scan shows only minimal growth even though he has been taken off the Confirm trial and has had no treatment for two months.  Our oncologist is not at all happy when we suggest paying for treatment without any compensation payout.

Sky is the limit

Hi Bex, the private hospital that is looking after my husband is called Rivers hospital in Hertfordshire. I would strongly advise you to have a private consultation first. When we had our consultation, we were informed different opinions that you don't get from NHS. We had our consultation in Bupa west London by a meso doctor called loic, he was really good and advised us well.

Good luck and keep up informed please xxxx. 

Sky is the limit

Hi Jayne, 

We didn't not get a compensation pay out because we don't know where my husband got asbestos from but we had a lump sum from the government and is how we paid for our private treatment 

X

Jayne53
Posted by

We are in the same position but some people we have met through a support group are paying £7000 every three weeks for treatment.  The £18000 received from the government would not even pay for three treatments at this rate.  We are paying for a consultation with a specialist hopefully soon and will see where we go from there.

Golden Star
Posted by

Hello Jayne

My situation is similar to yours, my partner was diagnosed with mesothelioma in July 2018, he did a short course of chemo which wasn’t really working. Then the hospital put him on immunotherapy, which he has had every two weeks and it has shrunk the tumours but he has had side effects such as pain in his stomach and kidneys, and really bad itchy skin. Recently the hospital said they are stopping the immunotherapy because of the side effects and in the last month he has lost his appetite which is causing home to be very frail. Do you think we should consult a private hospital?  Because it feels like all the doors are closing and I don’t know what to do. I hope things are working out well with your husband.

Jayne53
Posted by

Personally I think you should try every avenue you can for your own peace of mind.  My husband's oncologist is referring us to a London specialist and we are paying for the initial appointment just to see if there is anything he can offer.  If he offers a trial then it will be on the NHS but if not we will try private treatment.  Fortunately at the moment my husband is feeling very well and has even had his Plurex drain removed after two years!   Its a shame that the current restrictions make it impossible to make the best of this time when he has energy and enthusiasm but trying to enjoy the sunshine and garden.  Good luck to you.