Mesothelioma

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

VIM

Electricsaint
Posted by

Hi Guys. My Dad has been put forward for the VIM trial. Is anyone else on this and if so do you have any advice?

latchbrook
Posted by

Hi  

I've just popped in from the melanoma group as I noticed your post had gone unanswered. It could be that nobody else on here is on a VIM trial but my replying will push your post back to the top of the page where someone who has experience may see it.

While you're waiting for a reply you could also post your question in the ask a nurse section where a specialist nurse will aim to reply within 2 working days. Alternatively you could phone the Macmillan Support Line for advice. It's free to call and staffed by trained experts. The phone number and opening hours are at the bottom of this page.

Best wishes x

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

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Reneree
Posted by

My husband is on the VIM trial.  He was put forward after having chemotherapy last year.  We asked for immunotherapy treatment but were informed that he could not have that until he had had two different forms of chemo.

He was diagnosed with Mesothelioma in January 2017.  In March he had a series of radiotherapy and was put on chemotherapy in May 2017.  He finished him chemo in August 2017.  By Christmas we found that after several months of stability the cancer had progressed.  He started the VIM trial in February 2018.  He was selected to have the tablet Norevebine 2 a day once a week for 3 weeks.  After taking the first lot of tablets he had severe diarrhoea.  It lasted for 2 days and it was everywhere.  He couldn’t control himself at all and it was just running from him.  He spend most of the first week in bed.  He could not eat much and I had great difficulty in getting him to drink.  The second week was slightly better.  He didn’t want to keep taking this drug but continued because it was the only chance he had.  Over the course of the last few months he has continued taking the drug.  The diarrhoea is now nowhere near as bad, he still has breathing difficulties and walking problems.  The last week he has started to eat more food and is also drinking quite well.  


This drug is a chance of trying to combat this horrendous disease but it also can make you really ill.  I feel that we are between the devil and the deep blue sea. My husband has now had 3 cycles of this drug.  In between the cycles he has had to have fluid removed from his abdomen,  8 litre in March and 5 lites in May. The fluid is starting to build up again nd within the next 2 weeks he will have to have more removed.  We are due to se our Oncologist tomorrow with the results of the scan that was taken last week.  If we find an improvement then I think he will continue on this trial.  If not we will try for the immunotherapy drug.  I hope you find this info useful.  This is a terrible disease and you have all our love in dealing with it xx

mattwr88
Posted by

Hi,

My grandad has been offered the VIM treatment and is unsure whether to go through with it. He was diagnosed with Mesothelioma last September and has been in and out of hospital since. Last month he was scheduled for an operation to replace the lining of his lungs unfortunately they found it had spread into his spine at the eleventh hour and the operation was cancelled along with the chemo he was on. He is currently just on pain killers and is feeling much better than he has throughout the whole process so far and is now wanting more quality rather than quantity of life he has left. He'd like to hear from someone who has experienced the VIM trial as to whether he should try it or not. It doesn't sound as if you have had a great experience with it but do you know if this is the case with everyone? Or just be able to talk to someone who has experienced the VIM treatment would be great for him.

Thanks would love to hear from you Matt 

Reneree
Posted by

Hi Matt,  my husband had four cycles of the a Vim trial.  Unfortunately it made him increasing very ill.  He deteriorated so badly that we had to come of it.  I am however, saying that this does not happen with everyone.  We went on the VIM trial because our Oncologist said we had to have 2 Different types of chemotherapy before we could have Immunatherapy.  The VIM trial was our only option to take at that time.  Since coming off the trial my husband's condition has worsened. He has just come out of hospital after contracting SEPTIS from being in hospital for further drainage of fluid.  

From March 28th he has had 4 Drainages.  8 litres on 28 March, 5 litres on May 4th, 4 litres on June 5th and Another 5 litres this week.  We were told by the Oncologist that the VIM trial wasn't working for him and now because of taking this Immunatherapy is out of the question which means that there is nothing left for my husband but Palliative Care and watching him die.  I would now fight for Immunatherapy instead of going down the VIM trial due tio the fact that this desease is such a nasty one that you don't quite know what route to chose, but if looking back we were given the choice of the VIM or Immunatherapy I would certainly go for Immunatherapy.  As I said before that this is only from our point of view and I think you have to look at how your grandad is at this time.  I wish you all the luck in the world as this is such an horrendous desease to have.  I know we are still fighting it  and at this moment my husband is getting to the end of his life.  I wish you well and hope this advice is helpful xx