Looking for mesothelioma support

daughter33
daughter33 Member Posts: 12
in Lung Cancer #1
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.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    ?
    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
  • Sandblaster
    Sandblaster Member Posts: 17
    #3
    support
    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.
  • Pett
    Pett Member Posts: 3
    #4
    Mesothelioma
    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".
  • daughter33
    daughter33 Member Posts: 12
    #5
    Pett said:

    Mesothelioma
    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".

    My dad was diagnosed with
    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.
  • Karen41
    Karen41 Member Posts: 1
    #6
    First and second lines of treatment
    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.
  • daughter33
    daughter33 Member Posts: 12
    #7
    Karen41 said:

    First and second lines of treatment
    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.

    Thanks
    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.
  • Blessedwife
    Blessedwife Member Posts: 1
    #8
    Hoping to be supportive
    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
  • daughter33
    daughter33 Member Posts: 12
    #9
    Blessedwife said:

    Hoping to be supportive
    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

    I'm gald to hear your
    I'm gald to hear your husband is doing so well. My father is also doing pretty well. He had his final chemo treatment last Thursday and is feeling good. He has decided against a clincial trial and is just going to try and remain feeling as good as he can for as long as he can. In a way I guess he is no longer going to be receiving any treatment, just monthly scans and dr.appts. I agree there are several bumps in the road but I have to admit that it is getting easier and easier to handle those bumps. I have to admit that there aren't too many people out there with this cancer and it is nice to hear from those few who do.

    Prayers for your family also
  • barbebarb
    barbebarb Member Posts: 464
    #10
    daughter33 said:

    I'm gald to hear your
    I'm gald to hear your husband is doing so well. My father is also doing pretty well. He had his final chemo treatment last Thursday and is feeling good. He has decided against a clincial trial and is just going to try and remain feeling as good as he can for as long as he can. In a way I guess he is no longer going to be receiving any treatment, just monthly scans and dr.appts. I agree there are several bumps in the road but I have to admit that it is getting easier and easier to handle those bumps. I have to admit that there aren't too many people out there with this cancer and it is nice to hear from those few who do.

    Prayers for your family also

    Offering support
    I do not know anything about this cancer but glad your dad is feeling better.
    Prayers and love to your family
  • jackiegleasonscores
    jackiegleasonscores Member Posts: 24
    #11
    Mother in law has meso, also needs support
    Hi Daughter,
    My mother in law has been battling for about a year and a half, including a couple of major surgeries. She asked me as a prostate cancer survivor and a member of these support groups to see if I could find her some emotional support. She is now feeling the emotional effects as new symptoms and situations arise. She has to go for some kind of vena artery cavity blockage removal just after she received good news about the lung area.
    It would be wonderful if we could put three or four of these patients together for support. I would be glad to put yor father and my MIL in touch.
    Wayne

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