Mesothelioma

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  • Candy1311
    Candy1311 Member Posts: 6
    #22
    Em said:

    Meso
    Thank you Candy, I too have felt so alone in this as it is difficult to find people with this illness. What hospital have you gone to for your treatment? Have you ever thought about NIH? I do have to say I am impressed with the care and all people we have met there (two were meso, one man from Columbia and the other from NJ)say it is a blessing to them.
    Go to the www.curemeso.org website, this is the only one that Johns Hopkins recommends as being accurate. You can contact people there if you are interested in a clinical trial at NIH. You live in a good area though with great hospitals, I believe Sloan Kettering is one of the best for meso too. Jim had hopped to have surgery to remove the pleura on his right lung, but since they found one maligant spot in the back of his stomach, they (Penn Hospital in Phil.)said the surgery would be too hard on him, they would reconsider if the chemo clears up any other potential spots. He has discomfort in the diaphragm. NIH has given him some pills this week to help stimulate his appetite, but they are not working yet. After he had a pain pill last night he ate very good. We are retired from the Maryland area and have lived in Carlisle, Pa for almost four years. Keep in touch please. Em

    Meso
    I'm going to Lahey Clinic in Burlinton,MA. That's where I had the surgery. They consult with dana farber and Brigham and Womens hospitals in Boston. They are fabulous. Like I had said my tumor they had never seen before so I'm kind of a guinni pig. If they had known it was meso before the surgery they wouldn't have operated because of the size of it(9x6 cm)I'm pretty sure I'm the first person to have a tumor that big removed completely before any chemo or radiation was done.I understand the diaphram discomfort.They removed part of mine and replaced it with gortex, I still can't sniff or sneeze without pain. I'm going to go to that website you recommended because I've been to every other one and it's depressing. I hope they have him taking plenty of vitamin b it will help with the side effects(nueropathy in the feet and hands)Do you have any idea how he got this?
    Candy
  • Em
    Em Member Posts: 36
    #23
    Candy1311 said:

    Meso
    I'm going to Lahey Clinic in Burlinton,MA. That's where I had the surgery. They consult with dana farber and Brigham and Womens hospitals in Boston. They are fabulous. Like I had said my tumor they had never seen before so I'm kind of a guinni pig. If they had known it was meso before the surgery they wouldn't have operated because of the size of it(9x6 cm)I'm pretty sure I'm the first person to have a tumor that big removed completely before any chemo or radiation was done.I understand the diaphram discomfort.They removed part of mine and replaced it with gortex, I still can't sniff or sneeze without pain. I'm going to go to that website you recommended because I've been to every other one and it's depressing. I hope they have him taking plenty of vitamin b it will help with the side effects(nueropathy in the feet and hands)Do you have any idea how he got this?
    Candy

    Meso
    Candy, you are getting very good treatment, Dana Farber and Brigham are among the best listed that I have researched. I do not know the size of the tumor you had removed can you tell me in approximate inches what the 9 x 6 cm is? I hope you like the site I recommended, there is a book they send in their package that I didn't read because Jim's daughter said it was not up lifting. It is so important to stay positive and eat healthy. I did read a book called Surviving Mesothelioma and other Cancers by Paul Kraus who has had this since 1997. It was pretty good. Remember every one is different and I have much faith and hope they will find a cure for Meso. We do not know how Jim was exposed, perhaps when he was drafted to Vietnam. Do you have any idea how this happened to you? I believe we all have been exposed, it is only a matter of time. The immume system seems to be what it is all about. Please keep in touch Candy.
  • lacemom
    lacemom Member Posts: 3
    #24
    Em said:

    Meso
    Candy, you are getting very good treatment, Dana Farber and Brigham are among the best listed that I have researched. I do not know the size of the tumor you had removed can you tell me in approximate inches what the 9 x 6 cm is? I hope you like the site I recommended, there is a book they send in their package that I didn't read because Jim's daughter said it was not up lifting. It is so important to stay positive and eat healthy. I did read a book called Surviving Mesothelioma and other Cancers by Paul Kraus who has had this since 1997. It was pretty good. Remember every one is different and I have much faith and hope they will find a cure for Meso. We do not know how Jim was exposed, perhaps when he was drafted to Vietnam. Do you have any idea how this happened to you? I believe we all have been exposed, it is only a matter of time. The immume system seems to be what it is all about. Please keep in touch Candy.

    meso support
    I haven't checked this discussion board for quite a while due to computer problems. I'm glad to see that you've found support, info & treatment. I am the Mom/caregiver of a 3 year survivor of peritoneal mesothelioma. I do meso patient support, as well as a number of other things, for the only nonprofit foundation in the country dedicated to mesothelioma. If you'd like to connect with a large number of meso patients, get the best in current medical info, please contact me at topbait@verizon.net or go to www.curemeso.org.
  • Em
    Em Member Posts: 36
    #25
    lacemom said:

    meso support
    I haven't checked this discussion board for quite a while due to computer problems. I'm glad to see that you've found support, info & treatment. I am the Mom/caregiver of a 3 year survivor of peritoneal mesothelioma. I do meso patient support, as well as a number of other things, for the only nonprofit foundation in the country dedicated to mesothelioma. If you'd like to connect with a large number of meso patients, get the best in current medical info, please contact me at topbait@verizon.net or go to www.curemeso.org.

    Meso
    It is good to hear from another person who is familiar with this cancer. I was told by a nurse at Johns Hopkins that curemeso.org was the only website they recommend as being accurate. I am most grateful to Mary Hesdorffer for all of her assistance. My loved one is currently in a clincial trial at NIH thanks to Mary. God Bless.
  • Unknown
    Unknown
    #26
    This comment has been removed by the Moderator
  • Yulitzy
    Yulitzy Member Posts: 2
    #27
    Em said:

    Mesothelioma
    Thank you Jean and Linda! I was thrilled to hear from you both. We just got back from NIH last night. Jim completed his second cycle of "SS1P" he was at NIH from 7-6-09 t0o 7-15-09 and we went back from 7-28-09 until 8-04-09. He has Pleural mesothelioma. He was diagnoised May 12 and I believe in the first stage, he had a lot of fluid in his right lung. We first went to Penn in Phil. because a doctor here suggested it, as Jim was going to try and have surgery on the pleura, however, after going through a whole battery of tests, they found one maligant cell on his stomach way in the back, he had surgery to have this removed. Now the dr there says he cannot qualify for the removal of the pleura because the meso moved to this one spot. This dr. suggested chemotherapy and then maybe he could have the surgery. Have you both tried the curemeso.org website? I was told this was the only website that Johns Hopkins recommended as being accurate for this cancer. Jim will now go back for 4 more sessions at NIH, 3 days as an out patient for pet scans and cat scans and the FDA approved drugs Cisplatin and pemetrexed (Alimta). We too are nervous about the meetings to see if there is any response. His doctor is a Dr. Hassin at NIH, very good. Is this the doctor you are seeing? I truly believe in God and miracles, and I am praying that very soon a cure will be found for this cancer. They seem to be making great strides. Thank you again, it was wonderful to hear from both of you. May God abundantly bless you both.

    Em

    SSP1

    Hi, Em My father was diagnosed a year ago with Pleural Mesothelioma he has had his right lung removed EPP and unfortuatley it has returned and is now on his Left Lung I am looking into clinical trails and SSP1 has been one of them, I was wondering hows things going with your husband and this treatment? is there alot of side effects. Im trying to help make the best decision possible, I guess my real question is it worth it? did it help Jim?

    Thanks in advance for your feedback!

  • Captain Dave
    Captain Dave Member Posts: 3
    #28
    l5linda said:

    Mesothelioma
    I was diagnosed in Feb. 2008 with Peritoneal Mesothelioma. This is the lining of the abdomen>
    I was referred to NIH in Bethesda Md. by M. D. Anderson in Houston. I have had 3 surgeries since then and been through 6mo. of Alimta And Cisplatin. I had the warm chemo. circulated through my abdomen during surgery in March this year and then 2 liters injected 10 days later directly in my abdomen. I'm telling you all this to encourage you that Life is Good. God is good. I feel great. I am able to go on with my life with a few alterations here and there. ie. energy levels , lifting, etc. I have no definite knowledge of exposure. It could well have been flooring, insulation, roofing, who knows???????????/I grieved over trying to figure it out but decided that ,"what is, is". We all need to make every effort to warn others of possible exposure. I had never been sick since 10 years old. Active. Very Healthy. If I can be of any help, encouragement, info. , don't hesitate to ask....God Bless, l5linda

    peritoneal mesothelioma

    Hi 15linda, we are also dealing with peritoneal mesothelioma and my partner (Captain Dave) just went through cytoreductive surgery and hot chemo here in Canada, where lucky for us it is funded. Is this the kind of treatment you had? 

  • Captain Dave
    Captain Dave Member Posts: 3
    #29
    Em said:

    Meso
    It is good to hear from another person who is familiar with this cancer. I was told by a nurse at Johns Hopkins that curemeso.org was the only website they recommend as being accurate. I am most grateful to Mary Hesdorffer for all of her assistance. My loved one is currently in a clincial trial at NIH thanks to Mary. God Bless.

    Mary

    She was so helpful to us. (dave's partner here) I reached out to her when we first got the diagnosis and she called right back and put us dirctly on the right path for best outcome. Really great human being.

  • healingvibes77
    healingvibes77 Member Posts: 2
    edited November 2016 #30
    rockpanther5 said:

    Mesothelioma Diagnosis
    Hi - I was diagnosed in May of this year, with stage 4, Pleural Mesothelioma. I had been on oxygen and out on disability since July of 2008, with no diagnosis, but was blessed to finally be referred to NIH in Bethesda, MD, and within a month had my diagnosis. I am part of a study there, using Immunotherapy along with Chemotherapy, using Alimta and Cisplatin. The protocol runs for 6 cycles. Each cycle is 21 days long. On Day 1, I receive an antibody, Morab 009 for 2 hours, the fluids and Alimta for a couple hours, then Cisplatin for about 2 hours and then fluid again for 2 hours. Then on Day 8 I receive just the antibody, Morab 009. Then I am "off" for the remaining days. I have completed 2 cycles and begin Cycle 3, this Thursday, August 6th. I will get my first CAT and PET scans the following week, on August 13th and 14th. I am hopeful, but also pretty nervous about what the results of the scans will show, next week. I have thankfully, done really well with the treatments and have not had much nausea or other side effects. And I agree that Life is Good! One of my main symptoms, since July of 2008, has been ALOT of fluid in my lungs, which made breathing difficult and oxygen a necessity...NIH came thru beautifully for me, again, by surgically inserting a catheter into my left chest cavity, with a tube coming out, that allows me to empty this fluid, every day or every other day. Being able to do this has changed my life SO much. I barely need to be on oxygen anymore, my energy level has increased 200% and I am so much stronger and happier! What a huge blessing this has been! We are hoping that as I go thru more cycles of antibodies and chemotherapy, that this fluid will begin to dry up. I also am not sure of where or when I was exposed to asbestos. We have a couple of ideas, but nothing really concrete.

    I want to tell you all that I am so happy to find you on this board. I have looked and looked for online mesothelioma support or discussion groups and hadn't found anything until now. God bless you both and I hope we are able to talk more!

    Take good care - Jean

    Hi Jean, I'm reaching out in

    Hi Jean, I'm reaching out in hopes that you are still on this message thread?  If so, could you kindly reply to me?  I have a family member doing much of the same of what you did.  Kind regards, healingvibes77

  • healingvibes77
    healingvibes77 Member Posts: 2
    edited November 2016 #31
    l5linda said:

    Mesothelioma
    I was diagnosed in Feb. 2008 with Peritoneal Mesothelioma. This is the lining of the abdomen>
    I was referred to NIH in Bethesda Md. by M. D. Anderson in Houston. I have had 3 surgeries since then and been through 6mo. of Alimta And Cisplatin. I had the warm chemo. circulated through my abdomen during surgery in March this year and then 2 liters injected 10 days later directly in my abdomen. I'm telling you all this to encourage you that Life is Good. God is good. I feel great. I am able to go on with my life with a few alterations here and there. ie. energy levels , lifting, etc. I have no definite knowledge of exposure. It could well have been flooring, insulation, roofing, who knows???????????/I grieved over trying to figure it out but decided that ,"what is, is". We all need to make every effort to warn others of possible exposure. I had never been sick since 10 years old. Active. Very Healthy. If I can be of any help, encouragement, info. , don't hesitate to ask....God Bless, l5linda

    Hi Linda, I'm reaching out to

    Hi Linda, I'm reaching out to see how you are doing.  My sister was diagnosed with peritoneal meso also and is doing natural immunotherapy.  She doesn't know how she was exposed either.  Much love, healingvibes77

  • njkate07
    njkate07 Member Posts: 19 Member
    edited December 2016 #32
    Is it at all possible to have this in addition to renal cancer??

    Hubbie has stage 4 renal cancer with mets to liver, lung and brain. having a huge issue with lung of late. He has had thorocentisis (sp?) 4 times in last 2 months with total of 7 liters of bloody fluid drained. Cystology comes back undertermined. His CT scans show calcification of pleural due to asbesto exposure.

    He spent 4.4 years on Navy ship in boiler and engine rooms.From what I've read it is difficult to diagnose, you need a doc who specializes in this and the most accurate tool is to biopsy cells from his pleural lining as even PET scan can be misread if not well versed in this disease.

    Not looking for lawyers just info if this is possible??? His VA oncologist says not possible, but I'm not convinced.

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