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
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