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Looking for mesothelioma support
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Jan 08, 2012 - 10:03 pm
My father was diagonsed on November 30, 2011 with Mesothelioma. We were first told it was only a lung infection after having thoracotmy, however after biopsy results were told this horrible news. It has already spread to chest wall and lining of heart. I am despretly looking for anyone who is fighting this disease or anyone who has had a family member go through this process. |
Joined: Sep 2006
You are not being ignored by the kind folks on this board, I don't believe. On one hand, you do not ask a question, so it is hard to provide an answer. On the other hand, perhaps there are very few mesothelioma survivors here.
Living in SE Virginia, I am familiar enough with the disease: we are a shipbuilding community as well as the home of probably the largest naval facilities in the world, and some of our folks have been hit by this particular disease.
I wish I knew more, but everything I get is from attorneys on television asking us to call them.
I wish the best for your father and his family and hope that someone comes along here who knows more.
Take care,
Joe
Joined: Jan 2012
I cant really offer any experience with this that is positive. I have a friend recently passed with it, but his was a major involvement by the time it was found. He did chemo for 3 months to attempt to control it for more time. Has your dad seen an oncologist? Is there any recommendation? Come back and vent/ask questions, whatever. We can at least be a system of support for you.
Joined: Jan 2012
Hi daughter33,
My brother was diagnosed with mesothelioma in December last year. It is such an awful diagnosis. The first 4 weeks post diagnosis were incredibly tough as we all tried to come to terms with it. He has been doing a little better just lately though. He has had two lots of chemo and is due for a scan. He has managed to gain some weight which his doctors are really pleased about - it has been the first time the docs have given him any reason to be hopeful. It is like rain on dry ground after such a bleak prognosis.
How are things going with your dad?
Pet
P.S. There is a long, but old thread about meso under "rare and other cancers".
Joined: Jan 2012
My dad was diagnosed with stage IV last week after his pet scan. He will begin chemo this coming thursday. Noone in our family has any idea what to expect. He has been the only "Close" family member to have cancer. I know they have him on some pretty potent drugs right now. There are just so man questions that are unanswerable....we know this is terminal but how long to you fight this with the end result being the same. I guess we will just have to wait until his first treatment to see how it makes him feel....this is an extremely scary reality.
Joined: Jan 2012
Hi Daughter33, my brother is a 15 month survivor of meso. My brother's meso at diagnosis had spread to the lymph nodes near chest wall and aorticopulmonary window, but had not spread to any other organs. He took the FDA standard treatment protocol of alimta+cisplatin, then alimta alone for one year. His meso stabilized, and he was able to continue working in between the every 3week treatments. Side effects included fatigue, nausea, weight loss, no appetite. His meso returned with a vengeance within two months of finishing the first line of treatment, and has spread to the abdomen. His fatigue and appetite have worsened. He is in the process of determining a second line treatment, which likely will include a clinical trial drug. We pray for a miracle drug that puts his meso back in a stable state so that he can resume better quality of life. I pray for earlier detection and curative measures. Because meso is so rare, there aren't many incentives for drug companies to study it. Because there are so few meso patients, it is difficult to find enough patients for clinical trials. My advice is to have your father go to a major cancer center. While he may be able to get the first line of treatment locally, there are only a few places that have any experience fighting this aggressive form of cancer. Prayers and best of luck to your father and family.
Joined: Jan 2012
Karen41
My dad is taking those same drugs as well. His first chemo went well..he didn't get any of the nausea just a little fatigue. My dad has decided that he will not do any clinical trials. We live in Kansas and don't have alot of options unless we want to travel across the country. I do have to saying hearig that your brother is a 15 month survivor is uplifting to hear. I hope the best for your brother and your family.
Joined: Mar 2012
Daughter33,
My husband was officially diagnosed with Mesothelioma on December 23,2010. He is doing amazing. He did have Left lung EPP surgery and chemo. It is a tough road to travel but our faith is what carried us through the darkest times. If you have any questions I'll be happy to answer them.
Keeping you in prayer