Mesothelioma

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

Information

Quinny18
Posted by

Good afternoon all.

This chat is on behalf of my dad who has recently been diagnosed with pleural mesothelioma.

Firstly, I would be truly grateful if anyone on here who would bravely share their experiences of cancer with me, in particular, Pleural Mesothelioma.

My dad is 66 and relatively fit and healthy. He as been offered the MARS 2 trial (chemo and surgery) but as a family we are yet to decide what treatment to take. So I thought there would be no better place to try and gain some information, knowledge and personal views on this incurable cancer.

The doctor has sadly told us that it is a very aggressive cancer and he has give him 15 months before the cancer kills him.

If anyone has any honest advice or experiences that they can share to contribute to our decision as a family it would be massively appreciated.

Thank you,

Chris.

Gemmy1234
Posted by

Hi Chris

I am so sorry to hear of your Dad's recent diagnosis with mesothelioma :( I lost my father-in-law in November just gone to mesothelioma. He suffered for 6 months with the illness. We just made sure that we made lots of memories with him and had as much fun (in the circumstances) as we could with him. I am not sure of your location but we managed to get our Dad onto  the PROMISE Trial at the Royal Marsden Hospital. I would definitely recommend reading up about this trial. I also can recommend a very good support group who can help in lots of way. If you have any specific questions or anything you would like to ask please feel free to drop me a message and I will help as much as I can. Its a hard time for the whole family but just try and stay as strong as possible for your Dad.

Gemmy x

Quinny18
Posted by

Hi Gemmy, thanks a lot for your reply. I am really sorry to hear about your father-in-laws death and hope your coping well.

Were based in Liverpool and have been offered the MARS 2 trial but I will certainly look up the PROMISE trial. What treatment did that trial offer?

As you could probably imagine I have lots of questions...

If you don't mind me asking what type of mesothelioma did your father-in-law have?

I'm assuming all mesothelioma cancers are as aggressive as each other.

What treatment did he have and much did it effect him? (only if you don't mid sharing your experience) My dad is 66 years old and rather fit and healthy so any info, advice or opinion on the deteriation from treatment or the cancer would be a huge help. The doctor has said the MARS 2 trial offers chemo and surgery, but even then may only pro-long his life for 3 months so what is important to us as a family is how will he react to the treatment and so on.

Also, what approach did you take to claim any compensation available? although I value compensation least important in this situation, unfortunately, with such a short time left with him any compensation available will give us the opportunity to make the most of his time here.

Honestly, if you think I am asking too much I can understand.

Thanks alloy for your reply and hope to hear from you soon,

Chris

Gemmy1234
Posted by

Hi Chris

So the PROMISE trial was a randomised trial meaning that half of patients would be put on Chemo and half on immunotherapy (there are lots of good reports about immunotherapy at the moment). If your dad got put on the chemo side then after (I think)  4 sessions of chemo they re-scan and if there is no improvement then they automatically move you over to immunotherapy which is the drug that you ideally want to get your Dad on.  As I say we were travelling to the Royal Marsden for this put I think they are doing it in other locations now.

My father-in-law (Rob)  had epithelioid mesothelioma. I am not 100% sure but I think there is not a lot of differences between the mesotheliomas. I think may be some may have slower growth but ultimately its not good either way.

Rob was 75 when he was diagnosed and was very fit and healthy. Up until this point he had rarely ever been ill. He had many hobbies and was always out and about. He was diagnosed in May last year and passed away in November and I will say he was pretty much fine up until 2 weeks before he passed. He was short of breath a lot and quite fatigued but still managed to go out nearly every day on day trips/meals/cinema etc. It literally happened over night that he got extremely breathless where he could not really move out of bed because he had no breath. As I understand mesothelioma can affect every person differently so it is really hard to say. Rob was offered surgery and travelled to Leicester to have a meeting about this with a consultant. He was told it was very invasive and can leave you feeling quite poorly afterwards so although this may give some more months of life it was a bit 50/50 as to what the quality would be. Rob started chemotherapy for 3 months and then was accepted onto the PROMISE trial. Unfortunately he was randomised on to the chemo side. He was about to move over onto immunotherapy just before he passed away. Rob's attitude and our families was just to take each day as it came. Try and make him focus on his wellness not the illness. Everyone is different. Look up a lady called Mavis Nye - she was diagnosed with mesothelioma a few years ago and has had an amazing response to treatment.

Does your dad know where he thinks he was exposed? I totally understand compensation will never compensate for what has happened but you are right if it can help your dad, yourself and the family be more financially comfortable and allow you to do things with him that he enjoys and not have to worry about money then that is great. We are currently pursuing a claim. We done a lot of research into this and heard that it was very important to look for a law firm who specialise in asbestos claim (rather than the big law firms who deal with allsorts). We are with a firm called Novum Law who are great! I highly recommend them but not sure what areas they cover- it might be worth looking them up though and getting in contact- they might point you in the right direction if they cannot help. Rob was entitled to Government benefits (which I am sure your Dad will be too) which came through very quickly. You may have a local support group in your area who can advise of a firm to use? We also found Mesothelioma UK very helpful! They can put you in touch with a specialist mesothelioma nurse - I think its important to get as much help and guidance as you can through this time. They also helped fund us taking Rob to his trial.

Honestly feel free to ask anything. I know I had millions of questions going round in my head last year. Some people want to know what is going to happen (like I did) my boyfriend on the other hand didn't want to know anything.

Always here for any questions or for a chat Chris.

Gem :)  

Quinny18
Posted by

Hi Gem.

The MARS 2 trial my dad has been offered is 12 weeks ( 4 cycles f chemo- 1 day every 3 weeks) if, after two cycles my dad has reacted well to the chemo then he will eligible for surgery (the surgery is randomised selection and is scraping the cancerous cells away). If he is not selected then he will continue just chemo, if he is he will do both but as the trial is relatively knew there isn't much information on it. I am going to have a look into immunotherapy but I am assuming if it has not been offered to us that trail isn't running or is unavailable for whatever reason.

Where is the Royal Marsden?

In terms of Rob's health I think its a good thing that he was fine for so long and in pain for such a shirt time, however it's such an awful thing that it came without notice so there really is no telling what is going to happen, and when ;( would you agree? Because my Dad is very similar in his activity. The way I see it is my dad (Joe) is going to start treatment and he is going to suffer from the side effects as soon as and then the deterioration will begin early and last longer. But maybe its not always the case.

I am really sorry for your loss.

This has been a great insight for us so thank you so much for sharing it with me. The quality of life is our main concern. With the cancer being incurable and aggressive and even with treatment not promising a good prolonged period the question is, is the treatment worth it?

As you can imagine were worried that if he has chemo/surgery he is going to suffer and decrease his quality of life were as if he was to turn the treatment down eh will hopefully stay 'him' for longer.

If I can ask, what would your personal advise be?

This is brilliant information and advice and I am really grateful you have shared it with me. ON the whole I think we have taken the news well, especially my dad.

To be honest, not really as it could have been up to 30 years ago he was exposed to it and it as just took this long to develop.

I have researched some support groups and we are in the process of making appointments to write a will, and other claims and compensation eligible to him so we are being pro-active and getting the all rolling now and now we have a bit more information were going to be making a final decision by next weekend.

Thank you so, so much Gem. When we found out the news my dad didn't want to know  either, although he has an idea so the doctor let us know privately.

Can I ask how your boy friend took the news or the process of the cancer?

Again, thank you so much for your help.

Chris

suemi
Posted by

HI Chris, 

My Dad died from plural meso last year, about 10 months from diagnosis until he died. He wasn't on a trial but he did have chemo. It really knocked him for 6 but he was 79 and we think he had meso symptoms for quite a while but hadn't acknowledged them as he didn't want to deal with it. So his meso was quite advanced. The meso also caused other issues  (or highlighted them) such as diabetes (went from type 2 to type 1), a heart issue which caused his heart to race, foot problems etc etc). He had 4 rounds of chemo, which did slow down the meso but like I said knocked him about and meant a lot of time in hospital. We all hoped the chemo would give him a few extra months to enable him to tick of some last bucket list things, unfortunately it wasn't to be. We just wished we had put off the first round until after Christmas 2016 (he had his first chemo a few days before Christmas and felt terrible so our last Christmas together wasn't that great). Whilst chemo didn't help we were all glad Dad gave it a go, his Dr kept talking about getting him back on the golf course and had been very upbeat as Dad was pretty fit for his age. 

So what I am saying is everyone is different, there are people on this forum who are meso warriors and are still alive now after many years with treatment. I think the medicos give the 15 month spiel as it is the norm but there are always people who go beyond the norm. If your Dad is up for a fight and reacts well to the chemo then why wouldn't you try the trial and treatment? You can always stop if he doesn't react well. He is pretty young in the scheme of things. 

As for compensation side of things, Maggies, Macmillan nurse or a solicitor will help with form filling for what you are entitled to from the government. It should all be sorted quickly. Things like blue badge for parking are invaluable, we also got some modifications at home, step, grab rails etc As for claiming from a previous employers insurance (where the meso developed from if it can be traced) this seems to take forever, we are still going through the process and Dad died 8 months ago now.

Good luck with everything, hopefully your Dad will respond well to treatments and prolong his life for as long as possible. Make the most of all the time you have with him and make memories!!! I live in Australia but visited Dad last year for 2 weeks, we did so many things for 'one last time' mainly centered around food, and I really cherish those days with him. I was also there when he was diagnosed (luckily had been in the UK for 3 months so had spent a lot of time with Dad) and went to the first chemo sessions with him. Such a lot to get your head around.

Have a read back through posts on here, there is a wealth of info that others have shared. We found it invaluable. Particularly around eating and dealing/preparing for chemo.

All the best and good luck to your Dad

Sue x

Gemmy1234
Posted by

Yes I think that sounds right. I believe that before starting any trial you have to of had some form of chemotherapy first. I really would advise you to get in contact with Mesothelioma UK and may be they could tell you of all the trials that are happening near you? Our local hospital that Rob was being treated at only told us of a trial which was happening in our area it was only when we researched other trials that we managed to get him on to one of them. Here is the link for the trials information page on their website. The Royal Marsden is in London so was quite a journey for Rob (even longer for you) but they told us they were about to launch it in another hospital near us.  

http://www.mesothelioma.uk.com/information-and-support/clinical-trials/

You are 100% right there is literally no telling how he will be. Mesothelioma is so unpredictable. Mesothelioma is such a horrible disease on the other hand I think that its 'nice' because this has been in the lungs for as you say 30+ years so thank god it doesn't show immediately after being inhaled. Nevertheless the disease should not exist at all! Rob was a teacher his whole life which is so sad to think he was going to work to help children and contracted this fatal disease.  Rob's side effects to chemotherapy were very minimal! He felt fatigued a lot more but he just used to pace himself. He also started to dislike a lot more foods that he used to like. Rob went to see a holistic doctor (Dr Rosy Daniels) primarily to help him mentally. I think that is a big part of fighting this. She was able to get Rob in the mind frame of taking each day at a time. Listen to his body, if he wakes up and feels well then make the most of the day and do nice things, if his body told him to rest... then rest. One thing a Mesothelioma Nurse told us at the beginning (when we were investigating trials/chemo etc.) was not to rush into anything. If Rob is feeling well at the moment then don't rush into chemo. Why make a situation worse when it is okay at the moment?

Rob investigated every possible avenue. He was very adamant on surgery but after speaking with a consultant he came out and said he did not want to go for it. The surgery is all still very new at the moment... and there is not enough factual statistics to say that it will definitely do something. He was told that after the surgery he would be very ill and bedbound for a few weeks at least and then the recovery all depends on how fit his body is to rebuild afterwards. Rob was so determined though. His last night in hospital before he passed he said to us "I need to get up to the Royal Marsden to complete this trial" he was adamant the disease would not get the better of him.

Gosh my boyfriend was devastated. His Dad and him were best friends. He was there to support him the whole way and would spend as much time with him as possible. We had the worst year last year as Rob was diagnosed in May and then I was diagnosed with cancer in August! At only 31 I was not expecting this. So my poor boyfriend was trying to support the both of us. Mine was very treatable though and I am now in remission so I told him we must focus on his Dad which is what we done. It took quite a while for it all to hit my boyfriend and I think it was only after the funeral that it really hit him.

hmmm my advice would be...to get in contact with Mesothelioma UK and ask what trials are in your area also to mention immunotherapy to them and see if there is anywhere nearby offering this. I would see if you can get booked in to speak with a consultant about the surgery. (personally I think Rob made the right choice in not going for the surgery) but its worth hearing it from the consultant to be sure you are making the right decision. Your Dad is as well as he can be in the circumstances at the moment so again don't rush.. take time to digest all the options. If he decides to go with the chemo to start with then there is no harm in this... if it makes him very ill then he has the option to not continue with it. Again everyone is different some people are ill from it others aren't. (I just done 6 months and was fine). Keep him busy with nice days out and a holiday (if he is feeling up to it). Just do as much as you can whilst he is feeling well. (We took Rob to France in June of last year and he loved it).

I am pretty sure he will be eligible for IIDB (a weekly payment made by the DWP) and also PWCA (a lump sum payment). It all helps. Also a Blue Badge (very helpful for all the hospital visits).

Please keep  the questions coming if you have them Chris (that's why I have joined this group) and keep in touch and let me know how your Dad is doing. Thinking of you all. x

myosotis
Posted by

I think everyone has said what I have said. My husband was diagnosed in October 2017 and died in April this year. He had 3 sessions of chemo which shrunk the tumour but it had

spread to his liver so started on immunotherapy. During this period what helped him to remain calm and positive was hypnotherapy. Nobody seemed to mention this before but it really did help him.


Take carex

db2127
Posted by

Dear Chris

I am very sorry for what you are going through. 

I lost my Dad aged 65 in May 2016. Like yours, he was fit and healthy, a gym goer. 

He followed all the medical advice, took the EPD op, which didn't work, and then started on chemo alongside the AMORA-b trial (immunotherapy - 50/50 blind trial). 

He was initially fine with the chemo, and we managed a few days out here and there. However, after the fifth dose, he started to feel really ill. This left him unable to do things with us. The he was hospitalised with sepsis. He suffered greatly for 6.5 weeks and became unrecognisable. I won't go into detail, as I don't want to sound like a scare-monger! But I will say, that from our experience, and Dad said the same in a rare lucid moment, that we would not have pursued the chemo. His consultant said it would probably buy an extra 27 months. But actually, it robbed us of everything - we had a family holiday booked, a big friend/family reunion, day trips to things on Dad's 'list'; without chemo, we most likely would have managed those things at least. Instead, he suffered a great deal. 

I'm not saying do or don't consider chemo. I just think some advice should be to consider not, in cases of incurable cancers, and enjoy what time you do have. 

Whatever you decided, I wish you all the best, and if you have any questions, let me know! x

Quinny18
Posted by

Hi Gem.

So we've seen the specialist nurse and the doctor again just to clarify a few things. My dad's scans have been sent to the surgeon and now were just waiting on an appointment to be made with the surgeon to confirm how big the operation will be in relevance to my dad's cancer etc.

We have discussed it as a family and my dad has took the news so positive it has made it easier on all of us. As a family, we have decided not to rush into anything (treatment wise). My dads very healthy and happy at the minute and his attitude right now, and I quote is, "why fix what's not broken". As you can imagine we're all worried that he won't react well to chemo and suffer earlier than he would without treatment. Also the Doctor has said we can have another scan in 3 months time, or, any time if his health deteriorates.

We've got the ball rolling now with the claims and starting to find lots out about it all.

Thought I would let you know as you were so kind to share your opinions and experience with me.

Also, I am not sure if I mentioned last time we spoke that I am really sorry to hear about your diagnosis. You must be incredibly strong to deal with it all. I  hope your well.

Speak soon,

Chris.

Quinny18
Posted by

Hi Sue. Thank you so much forgetting in contact.

Im really sorry to hear of your loss Sue and I hope your coping well. And I hope you don't mind me asking but was your dad predicted a time scale for how long he had? Was your Dad in good health? My Dad's 67 this year and very fit, healthy and active. We have been offered chemo (standard treatment) and the MARS 2 trial (chemo and surgery-If they think he's ok for surgery) However, were not rushing into things  as we don't want to fix what's not broken (my dads words) as were worried that he might be badly effected by chemo and his quality of lifr is decreased. The saddest part of this is that its incurable and so its really a toss up between do we leave it whilst he's fit, happy and positive and whilst he's able to do nice things? or do we rush into it, which could potentially make him worse for the time being? (feel free to give your personnel opinion).

We have seen the specialist nurse, doctor and were waiting for an appointment with the surgeon for more advice before we make any decisions. We want to un-turn every stone before we decide what is best. We can also go in for another scan in 3 months or whenever he feels in lesser-health.

Well, yes, that's another thing we have considered that we can try 1 cycle without continueing if necessary. We just don't like the idea of him reducing his health and spending more time in hospital than he would without treatment. I do feel there will be a time to have the treatment but were not sure if now is too soon. The best case scenario is that he goes for treatment-he gets chosen for the surgery (with surgery he spends 2weeks in hospital) - both treatments go well and he recovers. Worst is obviously if the treatment goes bad and he ends up worse of than he is now.

We have arranged an opointment with mesothelioma UK for next week so hopefully they can inform us what hes eligible for and give us advice on other claims. I am sure your the same as me and feel finance is the least thing on your mind.However, it does give the opportunity to do nice things in his time he has left.  

Thank you so much for your input. I know it is difficult to discuss but it also helps sharing the burden. This forum really is invaluable an d gives a real insight to the every-day life of this cancer.

Speak soon, Chris.

Quinny18
Posted by

Hi, thank you so much for sharing your experience with me.

I am so, so sorry to hear of your loss. I guess they were very similar then.

I am relay sorry that the treatment didn't work for your dad and as a family. As you could imagine, our biggest fear is that, because he's fit, healthy and very positive at the minute, and the fact he has got a "don't fix what's not broken" attitude (his words not mine) were worried that is health will decline due to the treatment. We have been offered chemo as standard treatment or the MARS 2 trial (2 cycle's of chemo- surgery (if he can and if he is chosen) then another 4 cycles after the surgery). We are waiting for an appointment with the surgeon o see what the op actually consists of and all the stats. Then I guess we can decide properly. We have discussed it in as much detail as possible so we have come to an agreement that were not going to rush any thing and whilst my dads fit and healthy will leave it that way. We can always undertake one cycle of chemo and see how it goes, we can also pull out the trial at anytime. Your dad seemed to have suffered, I am really sorry! 6.5 weeks is a long time considering the cancer is incurable. We are hoping that we can get some sort of compensation to do some nice things whilst he is healthy.

Thank you so much for your time.

Chris

He was initially fine with the chemo, and we managed a few days out here and there. However, after the fifth dose, he started to feel really ill. This left him unable to do things with us. The he was hospitalised with sepsis. He suffered greatly for 6.5 weeks and became unrecognisable. I won't go into detail, as I don't want to sound like a scare-monger! But I will say, that from our experience, and Dad said the same in a rare lucid moment, that we would not have pursued the chemo. His consultant said it would probably buy an extra 27 months. But actually, it robbed us of everything - we had a family holiday booked, a big friend/family reunion, day trips to things on Dad's 'list'; without chemo, we most likely would have managed those things at least. Instead, he suffered a great deal. 

Gemmy1234
Posted by

Chris, thank you so much for updating me. I think you are definitely doing the right thing. I know its always a hard decision as in your head you are probably thinking "what if starting the treatment now makes a difference" the reality is it might... but the chances of it improving him for more than a few months is unfortunately slim. I think he will have a better quality of life just focusing on how well he feels now. (personal opinion). Lets see what a scan in 3 months says and I pray that everything will still be stable :) .

Glad to hear you have also got the ball rolling with claims/benefits etc. I know money is the last thing on your mind but it really does help in not having to worry as much about doing all the things your dad enjoys without having the added pressure of money being involved. I hope you find lots of time to do nice things and treat him lots. :)

Take care Chris. Thinking of you all and please keep in touch. Gem :)

suemi
Posted by

Hi Chris, 

Thanks for your reply.

My Dad was 79 when first diagnosed. He was still playing 18 holes of golf twice a week, swimming and going to the gym a couple of times a week. He was pretty fit and loved being outdoors.

The consultant was vague about what stage Dad was at with the meso. I wanted my brother (who went to most of the early appts) to ask outright, but he didn't want to know. Dad was very stoic throughout and wanted to fight which was why he started the chemo at the earliest he could (which we all now wished we had waited until after the Christmas). I think if Mum were honest she would say she wished he hadn't had the chemo at all and that they had used the time to go on holidays before he got really sick, but he was diagnosed in winter, so a Rhine river cruise probably wasn't on the cards then! The chemo did knock Dad about, but who knows may also have been the meso.

I don't think anyone can tell you what you 'should' do. You and your family and your Dad need to weigh up the options as you have already said. I would push the consultant to let you know what stage he believes your Dad's meso is it, is it early only stage 1 or 2? Then perhaps you have time to wait and see if the tumor changes. If he is already 3 or 4 then maybe there is no point in going through the chemo (I mean that losely) and you should enjoy the time whilst he is still feeling reasonably well. 

Dad was told 15 months but died after 10. I am so glad I got to go home this time last year to spend those 2 weeks with him, very precious memories. Whilst meso is unbelievably cruel maybe it isn't as bad as other things that can kill you. I think I would have struggled way more if Dad had died suddenly of a huge heart attack, I suppose at least with meso you know what is going to happen but unfortunately no real time frame.

My Dad's tumor was pressing on his gullet which made eating really hard towards the end, Dad was resigned to getting fed by a tube but I know he really didn't want that to happen. Unbelievably on the day he died he ate very well, perhaps he knew it was his last meal, he was a few days away from the feeding tube and we think he knew it so gave into the meso.

Anyway I am not sure my ramblings will be helping you. If we had our time again we would have delayed the chemo by 3/4 weeks for definite so we could have 'enjoyed' that last Christmas together more. I think Dad would still have gone ahead with it though as he wanted to fight for a summer holiday (which he never got, but consultant gave him hope). Mum with hindsight would say she wished he hadn't had the chemo, but then we have no idea what his path would have been.

Good luck Chris, I am often thinking of others going through this nightmare. It is so hard and there are so many unknowns. Your Dad may well be one of the lucky ones who has been caught early enough for chemo and trials to help. I hope so.

All the best Sue