We only got the diagnosis today and are trying to get enough info to decide whehter to go for chemo or not-radio not offered.
I notice that most of the contributors seem to have gone for chemo when offered. Have any of you declined this and if so how long since your diagnosis and how are you feeling.
Do any of you know of a support group in or near the West Lothian area in the next week-willing to travel.
Thanks in advance.
FormerMember
So sorry to hear that your husband has this vile disease. I know how tough it is to decide whether to opt for chemo. I can only tell you our experience and hope it gives you some food for thought. My husband was diagnosed with Mesothelioma just a year ago. At that time, he was told by the independent medical assessor acting acted for his compensation claim that his condition was likely to deteriorate within six months, and that his life expectancy was about twelve. He was offered chemo, a combination of cisplatin and alimta. Cisplatin is a general treatment for lung cancers: alimta is more specific to Mesothelioma, and has been used successfully in the USA for some years, although it had then only been licensed for use in the UK for a few months, and was not generally available. He was offered six cycles of treatment at three-week intervals, with a scan after three cycles to see how effective the treatment was. We were told that on average patient’s life expectancy was increased by two to three months. I felt that a possible sixteen weeks of treatment, did not weigh well against the expected benefits. However, G decided that he would go ahead. After three cycles, we were told the tumour had responded to treatment, and was stable. After the final cycle, in mid-March, he was in remission, and still is today. I don’t know how much information you have been given, but expect that as we did, you have a whole lot of questions to ask. We found that the Macmillan nurses on this site were helpful in giving us answers to our questions. Only you and your husband can make this awful decision, much will depend on circumstances like age, and any other medical conditions. All I would say from our experience is that patients can benefit hugely from chemo, and wish you both well whatever your final decision.
So sorry to hear of your husbands diagnosis, like Daffie above I can only tell you of our experience. My sister was diagnosed with secondary breast cancer in March 2008, she was diagnosed while in America with her husband (he works there) and her prognosis was 3 - 4 months. The doctor there did not offer her chemo as he said she was in advanced stages and told her to go home and make plans with her family as chemo would not help her or prolong her life.
On her return to the UK the oncologist here had a different view, and started her chemo immediately, after all she had nothing to lose. It is September 2009 (18 months later) and my sister is still with us, had it not been for the chemo she most certainly would not have been. She had just had a scan and althought the tumors are still there, they have not grown, she looks fantastic, and has a good quality of life.
Good luck with your descision, it must always be a personal one.
Thank you SO much for your reply. It helps to be able to correspond with others who-unfortunately-are now or have been in the same boat.We have just read it together and whilst we appreciate everyone is different we are really heartened by your experience and hope that the remission continues.
Your information is particularly helpful as you have mentioned the treatment names which will allow us to question the professionals about their suitability for us.
Can I please ask if you know what stage your husband was, i.e. 1,2,3 or 4 when diagnosed.
Thank you for your speedy reply. It really helps to be able to correspond with others who-unfortunately-have an understanding of the issue because of their family member's own experience.
We appreciate everyone is different but by gathering information on the experiences of others we hope to have enough information to allow us to make what we hope is the correct choice for us.
I hope your sister continues to enjoy a good quality of life.
Thank you again for taking the time to reply to our question.
I'm so glad that you found my comments helpful. We were never told what stage G's cancer was at, because he was so positive that he was going to fight it from the start, he never asked, neither has he asked about his "timescale". It seems any any information is based on averages, and I suspect a certain amount of guess work. One thing I didn't mention, was that G tolerated his chemo quite well, he had some monor side effects immediately afterwards, but by the second week of each cylce was feeling well again. He did get more tired in the later cycles, but soon recovered after the treatment finnished. He didn't even lose his hair, just experiencedsome thinning on top. We have since learnt that few patients suffer hair loss with this particular treatment. When I told him that I had replied to you, he said again that he felt he had to to take whatever tretment was offered. Throughout, he has been so positive, and I firmly believe that his attitude has helped enormously. One other thing, having the chemo gave G the sense that he was in control of his tumour, not the other way round. I remember only too well the anguish and anger we felt when he was first diagnosed. It just isn't fair. You must be going through the same at the moment. I can't honestly say it gets better, but I have learnt to appreciate what I have, count each day as a blessing.
