Mesothelioma

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

Mesothelioma

pottermouse
Posted by

I have only just joined this group but have been reading some of the post's, my husband was diagnosed with malignant epithelioid mesothelioma in February 2018 early stage T1, but our local health service could offer no help and just told us that he could  have 8 months to 2 years left he was 68 years old.  They said at some time in the future he could have  chemotherapy to help with the pain. This was the first time I had even heard of this cancer, at the same time our son in law was diagnosed with small cell lung cancer, and he died six weeks later leaving our youngest daughter and our only grandson eight years old devastated, as well as the rest of our family. We felt at this time we needed to do something to help my husband to live a little longer, so we some research into surgery, he did not want to go on a trial, where  it would be randomised so we sought out a Thoracic surgeon in Leicester and contacted him direct, he asked us to go down for a consultation and offered my husband the operation on the national health. He had an extended pleurectomy decortication in May last year, its quite a major operation but my husband was really fit and active and had no other health issues, the surgeon was pleased with how it had all gone and thought he had removed all the signs of the mesothelioma. However the CT Scan in November now shows signs of it returning, he is now waiting to have Chemotherapy at our local health centre they want to give him Pemetrexed and cisplatin, the oncologist in Leicester wanted him to have Pemetrexed and carboplatin, we are wondering if any of you have any experience in this field.

We are waiting for an appointment still at our local health oncology department  so any information would be great,

PappaChappa
Posted by

Hi Pottermouse,

I too was diagnosed with Mesothelioma in Dec 2016 (at the age of 54) and given a similar prognosis, that was a little over 2 years ago.

Try not to focus on the prognosis as it'll drive you nuts, take each day as it comes and make the most of it, is my advice.

So sorry to hear about your son-in-law, life can be so cruel at times. I hope the passing of time will ease the pain you all feel.

As to your query about the chemo type and effects, I did the Cisplatin / Pemetrexed and was scheduled to have 4 cycles, but only managed 3. I too was very fit and healthy prior to diagnosis but I must confess it really knocked me for six by the time I'd completed the 3rd cycle. But everyone is different, so don't let my experience dissuade your husband from not considering it. Equally  I wouldn't rule out any trials as they don't all include placebo  places. I did 6 months on a trial between July 2017 and Feb 2018 and managed well, Only coming off due to disease progression. There are a number of mesothelioma specific  trials still available now, the links below might help.

Cancer Research UK

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/clinical-trials-search?populate=Mesothelioma&f%5B0%5D=field_trial_status%3A4386

Asbestos.com

https://www.asbestos.com/treatment/clinical-trials/

Regards,

Pappa

pottermouse
Posted by

Many thanks Pappa for your reply husband will hopefully get the chemo he has requested, but it seems like a battle with the NHS to get past their know it all attitude. We have spent hours researching Mesothelioma and have found that diet and exercise and the right frame of mind can go a long way to help, we even have accounts from people who have lived for 20 years with it, so we have to keep positive, and we hope you can do the same.

gogodav
Posted by

Hi Pottermouse, my husband was diagnosed july 2016, at age 67, stage 3/4, and given 1 year!!!!! Its been now 2 1/2 years. He had two cycles of carboplatin and permetrexed, the first of 8 rounds , the second 9 rounds. Along the treatment we did really well, no side effects, meso reduced almost 80 % and we were able to lead a normal life, travel abroad on holidays and had the best of times. Eventually after 2 years Meso started to grow again and had  chemo again  with vinorelbine which brought all the side effects the other didnt., so he had to stop it. Thou he is now short of breath and some related syntoms starts to appear he is still doing quite reasonable well. We are not able to go away on holidays because he gets too tired, he has dysphonia and in under pain medication but I we have to choose again, we would go for the carboplatin permetrexed again.I know it works different for other patients, but if he doesnt have any other health issues Im sure he will tolerate it well. You need to be strong and try to keep your spirits up, Its a difficult road but with love and care it will be easier to walk along.

take good care XXXX

Gogo

pottermouse
Posted by

Many thanks Gogo for your reply, my husband is going to start with carboplatin and permrtrexed next Wednesday, we know that is not as bad as some other chemotherapy treatments, but keeping positive about it. he also has dysphonia, and is taking Gabapentin for nerve pain due to the surgery. is your husband having any further treatments? I am very grateful that there are other people out there who offer support and information, there are time when its all too much.

thank you once again and we wish well

xxxx

roni2008
Posted by

Best wishes to mr pottermouse for next wednesday.  Carboplatin is a little easier than cisplatin, in my opinion.  Please do read my profile. (Its easier for me to say that than to keep repeating myself)

gogodav
Posted by

Hi Pottermouse, I dont think my husband will have any other chemo treatment. He did very well with the first line carboplatin and permetrexed but atsome point after 2 years stopped working and went to the second line with Vinerelbine, knowing it only had a chance of 20% of stopping growing. As I told you he didnt have any side effects form the first one, he even went to play golf the next day after chemo, never had nausea or was tired. We went abroad on holidays twice during treatment and was able to walk long distances, drive for hours etc etc. With the second line he had all the side effects that didnt experience before, thou the Oncologyst said is was a milder drug. he had to be hospitalized 3 times in 3 month for liver and gallbladder inflamation, and ended up with an acute pancreatitis. So he stopped treatment and dont think there is anything else to try chemo regarding. We will find out next week. He came out well of his side effects, now he is back to normal eating, no pain, only dysphonia and lack of energy which is pointed to the illness itself even when the scan showed no growth and being stable. In the last 3 /4 month he lost more than 3 stones, now it looks like he is gaining weight again, very slowly. he is not bedridden, but he gets tired if we go out and only manages to walk for no more that 5 minutes without getting tired or agitated so he spendsmuch time at home. his medication consist of analgesics, he also has corticoids which now are being reduced and now we are trying cannabis oil but to tell you the truth I dont know if its making any good. He also experienced inmsomnia for weeks but now that is over and sleeping well. The near future??? I dont know, we try to live a normal life as possible, He is a very easy going person, doesnt complain at all. As for myself I try to have some time for myself, having coffee or dinner with friends from time to time to clear my head and have some fresh air. Our daughters are very present and visit twice or more times a week and also have good friends and family members who are always at hand if we need them.  We live in Argentina, and Thank God we have a very good private health care with excelent oncologyst and palliative care doctors. Actually one of the palliative doctors comes home every week to see how Charlie is doing and have long chat with us. Its so comforting to know we can count on them for any questions any time of the day. 

When your husband starts treatment make sure he is given all the preparation medication to avoid side effects, like folic accid, a good stomach protector and a shot of B12 vitamin. You said that he is fit and doesnt have any other health issues so Im sure he will have a smooth path along treatment. Dont think in term of time left, make everyday the best of days. I perfectly know its not easy, we cannot plan month ahead and as time goes by and month or years pass we tend to think the end is closer and we plan thing no more than a week in advance. But make the best of time now, Charlie was told he had a year and we are getting close to 3. and overall in good shape. So stay strong, go out as much as you can, treasure time with your family and keep possitive which helps a lot to overcome any stones on the way.  Take good care of you both, you will be in my prayers. Love, xxx

pottermouse
Posted by

Hi to you all and thank you for all your advice and support and thanks to roni for profile Hubby had first chemo yesterday and can say so far all is going well no side affects yet, he is on all the folic acid tablets as well as the steroids and B12 shot, he is still having the nerve pains due to the operation but we have an appointment next week to try and sort that out,its been a bit of a relief just getting over this first session and I am feeling a little less stressed today, I know we have a way to go yet, and I wish that I could be as positive has hubby is, so with all your help I think I can.

We still are feeling the loss of our son in law last year to small cell lung cancer he only had six weeks from being diagnosed to passing away and leaving grandson only eight then, but he had his ninth birthday yesterday and although he missed his daddy we all got through the day.

The warm weather is also helping as we can get out in the Garden, and see all the spring bulbs coming up, what joy.

I hope all is going well with you all and take care.

Love xxx