Support for a carer

[makepeace]

My husband has mesothelioma -- diagnosed a year ago. Although he has been having chemo every three weeks, coping well apparently, I understand that the disease is not curable and the chemo will stop when it is seen not seen to be helping. I would like to try to understand what happens next with this disease. Has anyone been down this path (caring for someone with mesothelioma?)

[Wishingwell]

I'm caring for someone with mesothelioma too. I've sent you a pm with more details.

[Elise_carter]

Wishing wll. My husband has been diagnosed with mesothelioma. Would appreciate your sharing any information and treatment as my situation is same as Makepeace Thank you Elise

[Leannebillo]

Hi Elsie, sorry for late reply still getting use to this site, my husband Neil was diagnosed in may 2011 at the age of 50, have been doing chemo since then, cisplatin & alimta was the first combinations, that had to stop after his body reacted to it in Dec 2012, we have had 4 months off, August this year had CT Scan & the rotten thing has come back again, so we have doing another chemo cocktail of carboplatin & alimta ( 1 dose every 3 weeks for 6 sessions) we have had 3rd session now,CTScans are done, so off to oncologist on Wednesday to see if it's working xxxx glad you made contact with me xxxxx

[Wishingwell]

Hi Elise I'm sorry to hear about your husband's illness. My partner was diagnosed with peritoneal mesothelioma nearly 2 1/2 years ago aged 36. He had a couple of cycles of chemotherapy, permetrexed and cisplatin, before having surgery, a peritonectomy with heated intraperitoneal chemo. Although the surgeons removed all the visable cancer at the time of surgery within 6 months it was back. For the past 12 months he's been having chemo every three weeks. He has alimta and carboplatin, as its side effects are less toxic to him than cisplatin. He also had a biopsy sent to the states for profiling, I think it cost about $8,000. The report suggested that a breast cancer chemo drug might have an effect but after a few months of having it there was no effect. Unfortunately there were no other drugs on the report which were suggested to be beneficial to him. My partner's last scan in July showed a reduction in the disease, which was incredible. Unfortunately even this news did little to lift his spirits. My best friend's father was diagnosed with pleural mesothelioma about 6 years ago and he had surgery as part of a clinical trial in the UK. Without my friend's family's knowledge and support I don't think I'd really have known where to turn for help. I hope that you and your husband are coping. The side effects of the toxic chemo can be difficult to tolerate. I have found that I get overlooked by nurses who don't ackowledge my existence, but I'm not the patient so I shouldn't grumble. Make sure you have good support you too and use all the resources available in your state. You might want to speak to a lawyer about claiming mesothelioma compensation too? We've not done it so I don't know what's involved. I'd apply for a concession card too because the cost of all the prescriptions mounts up. Thinking of you both Wishing Well xx

[Elise_carter]

Dear Wishing well, thank you for your detailed reply. I guess we just have to be grateful that John's was diagnosed so late in life. 36 seems awfully young to have to cope with this insidious disease. Our adult daughter applied to the compensation board in NSW and they were helpful and came to interview us just last week. it might be worth while for you simply because, hopefully, you have many more years ahead of you. Have a concession card and a disabled sticker for the car too. Makes life a bit easier. I have a my meltdown moments but have good support and so far have been treated quite well by all medical staff. I must say one does feel a bit like a parcel being handed around from Dr to Dr. In our case it was just incredible to go from being a fit and healthy 73, still sailing across oceans, to having reduced lung capacity and the dreadful malaise that comes with the chemo. It has only been 6 or 7 weeks since the diagnosis so I am not even sure which drugs they gave him. Will know more after this week with two Drs appt and then the next round on the 3rd Dec. Thanks for your support and will keep in touch. Best wishes. Elise.

[Elise_carter]

Hi Leanebillo Thanks for your reply and I hope your next round of chemo goes well. We were lucky that John didn't get the terrible side effects that I had prepared myself for. He was just tired and slept for a week. John's next round is on the 3rd Dec so I'll pay more attention to the drugs etc and let you know how it goes. More later..best wishes E xx.