Mesothelioma

beaglesheltie
beaglesheltie Member Posts: 1
edited March 2014 in Caregivers #1
A loved one has just been diagnosed with mesothelioma. It is mestatic and epithiliod. Does anyone have any experience with this type of cancer? WE see the oncologist on Jan 12, but the pathology report and the surgeon seem to suggest pallitative care. Surgery is not an option.
I don't know what to do. Any suggestions?
Cindy

Comments

  • augigi
    augigi Member Posts: 89
    #2
    I thought I posted a reply,
    I thought I posted a reply, but I can't see it now. My mother has mesothelioma also. She had some chemo which kept things stable for a while but she got worse quickly after stopping chemo for a couple of months. We are starting another cycle next week hoping to alleviate some symptoms, but we are down to a short time according to the oncologist.

    Hard to believe - my mum had no association with asbestos that we know about and was very healthy until this happened 9 months ago. Unfortunately meso is very aggressive, although there are some treatments to consider depending on what stage it is at.

    Right now we are just taking each day as it comes and spending whatever time together that we can.
  • mysarial
    mysarial Member Posts: 14
    #3
    I am so sorry to hear about
    I am so sorry to hear about your situation :(
    My husband was diagnosed with epthelioid meso at the end of October, and he went from Stage 1 to Stage 4 over the course of about 2 months (once they showed 2 abdominal lymphs showing cancerous). He's not a candidate for any surgery either, and the oncologist gave him 12 months. He is very young (36), and also has never had any traceable connection with asbestos.

    We just began chemo in December. He had 2 weeks of nausea, dehydration, rash, and needed a blood tranfusion. He's better now, but is about to go for the next round. We can't sign up for any clinical trials at the moment, because he's already begun chemo, and we don't know how he's responding yet. On top of that, he also has developed Pulmonary Embolisms, and has to be on anti coagulant shots. So right now, he's feeling ok, but he can't get much breath. I don't know what we're going to do. We've seen specialists in New York and Atlanta, and they all say the same thing.

    There are some reports showing that immuno therapy shows promising results, but again, that is a clinical trial, and hard to get into for us. Since Meso is so rare, there isn't a ton of info out there. Check out MARF.com, as well as Paul Krauss. Paul has lived 20 years since his diagnosis, and attributes it to his new lifestyle. He is one of the few long term survivors, so there is a tiny ray of hope.

    This is one of the most frustrating and devastating cancers, there are so few people who live more than a couple of years, there aren't many specialists, and there is no cure. My heart goes out to you. We're doing the same thing, taking each day as it comes, and not making any plans.
    The hardest thing for me is to have to keep going to work every day, when I know how precious our time together is now. I hope you can find some peace, hope and mercy.
  • augigi
    augigi Member Posts: 89
    #4
    mysarial said:

    I am so sorry to hear about
    I am so sorry to hear about your situation :(
    My husband was diagnosed with epthelioid meso at the end of October, and he went from Stage 1 to Stage 4 over the course of about 2 months (once they showed 2 abdominal lymphs showing cancerous). He's not a candidate for any surgery either, and the oncologist gave him 12 months. He is very young (36), and also has never had any traceable connection with asbestos.

    We just began chemo in December. He had 2 weeks of nausea, dehydration, rash, and needed a blood tranfusion. He's better now, but is about to go for the next round. We can't sign up for any clinical trials at the moment, because he's already begun chemo, and we don't know how he's responding yet. On top of that, he also has developed Pulmonary Embolisms, and has to be on anti coagulant shots. So right now, he's feeling ok, but he can't get much breath. I don't know what we're going to do. We've seen specialists in New York and Atlanta, and they all say the same thing.

    There are some reports showing that immuno therapy shows promising results, but again, that is a clinical trial, and hard to get into for us. Since Meso is so rare, there isn't a ton of info out there. Check out MARF.com, as well as Paul Krauss. Paul has lived 20 years since his diagnosis, and attributes it to his new lifestyle. He is one of the few long term survivors, so there is a tiny ray of hope.

    This is one of the most frustrating and devastating cancers, there are so few people who live more than a couple of years, there aren't many specialists, and there is no cure. My heart goes out to you. We're doing the same thing, taking each day as it comes, and not making any plans.
    The hardest thing for me is to have to keep going to work every day, when I know how precious our time together is now. I hope you can find some peace, hope and mercy.

    I am so sorry about your
    I am so sorry about your husband - 36 is far too young. My mother also had 2 PE's, about 1-2 months after being diagnosed and is now on oral coumadin (blood thinner). The shortness of breath and pain has really kicked in now, and last week mum started with home oxygen which she really resisted, but it's helped a whole lot. She just uses it when she's sitting or walking around, doesn't need it at night as she's sleeping well.

    Her chemo was Alimta (premetrexed) and Carboplatin, just one dose of each every 3 weeks for 6 times. I think tomorrow's will be the same regimen, just hoping to shrink a mass she has on her side that is hitting a nerve and causing quite some pain. We were lucky in that she coped with chemo very well - no hair loss, and just a niggling nausea for several days but no vomiting etc.

    It really is a horrible cancer, but then I suppose they all are. We are in Australia, where there was a lot of mining and unfortunately it seems to be the world leader in mesothelioma occurrence.

    Best wishes to both of you.

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