Hi everyone! I suffer pleural mesothelioma arising from past asbestos exposure. Is there anyone out there?
About 8 years ago I was in the Asbestos abatement field myself, though my cancer was not a result of my job. If your so inclined, feel free to write me mail at firstname.lastname@example.org
My beloved husband is currently undergoing 35 radiation treatments and 8 doses of chemotherapy (cabroplatin) for mesothelioma of the chest wall more than likely due to asbestos exposure many years ago in the Navy. The prognosis is good since it is small and localized but we are still very fearful. Please tell us your story. Thank you, Mrs. Johnson, Orlando, FL
I forgot to include my e-mail address for anyone who wishes to contact me directly. It is: email@example.com. Please use Neenee in the subject line so I will know it is not from a spammer. Thanks for your kindness and consideration.
My lifelong partner was just diagnosed with Mesothelioma July 1, 2003. He's 56 and worked 35 years around asbestos. He has had his first treatment of cisplatin and Alimta, and his second is scheduled for the 19th of August. It is an ugly disease, but we aren't going to let this get him. Tell me more about your situation. We live in Washington State, where there are world renound specialists near by in Seattle.
My mother was diagnosed today with Pleural Mesothelioma stemming from her exposure to asbestos as a child. Her father, an asbestos installer, died from mesothelioma. She is STage four and we anticipate chemo to start quickly. can you tell me how your partners treatment is affecting him physically? We are being told the treatments will not make her nauseous. I know everyone is different. Just wondered how it is going and what kind of diagnosis you are being given.
I hope you and your partner are doing well.
It's usually the wives that get it from doing the husbands laundry...I never really thought about the kids. How old is she? God Bless her.
Vern is getting Alimta and Cisplatin, and so far he hasn't been nauseated. He just had his second Chemo yesterday, and isn't doing as well as he did after the first. Overall it's going good though. He gets a little sore in the roof of his mouth, and "VERY" tired. It's important to take the medicated before, during and after the treatments. He's taking Lorzepam (sp)and I think that might be helping him. Yes, everyone is different...depending on your overall health.
Let me know how it goes. I care, and God Speed.
Chris in WA. State
My e-mail address is firstname.lastname@example.org, if you want to e-mail me privately.
Hello my name is Donna. I am wondering about your partner.How is he doing? I am currently recovering from surgery in Oct. and I am being contacted by lawyers about seeking damages, I am wondering since it has been a while since diagnosis has your partner had any success with a lawsuit or are the lawyers getting all the money. I am sorry to go right to the money but I am trying to find out about the unfairness of the lawyers. Thanks.
That depends on what you consider to be 'all the money'. The standard cut for lawyers is 40%, and a typical settlement for a mesothelioma case is $2 Million (though a good judgement can get much more). It's all-important to get a good lawyer, though. In my experience, there are some really good ones (good lawyers and good people) dealing with mesothelioma. Let me know if you have any questions about the ones who've contacted you (I may know of him or her) or you want a referal.
My husband of 35 years died 3/03 from complications of the surgery he had for Mesothelioma at MD Anderson Hosp. He was in a medical facility all but 9 days of a 1yr and 1 month. His medical bills after ins., medicaid, and cash is $1.5 million and I have not been able to get any help finicaly. I have recieved only about $22,000 since 2002 from the companies he worked for. We have proof that he worked around asbestos of different kinds all his life. The Gov has allowed the asbestos companies to hold in bankrupcy from 14 to 16 years. They have moved their companies overseas and are right back in business and making millions. They are still sending it bach here for us to use with some asbestos in the product. I wish you lol if you do go after any companies. You also might want to read up on what Pres. BUsh is trying to do also. I know I sound bitter and I am some. This year I was dio. with breast cancer. I also have to be checked for mesothelioma because my husband was never told that he was working with asbestos and he brought all his clothing home for me to wash. He was my rock, my best friend and I miss him now and always. e-mail email@example.com if you wish to talk.
My dad has just been diaganosed with Meso he goes for his first chemo tomorrow. I'm really scared. i have contacted an attorney but still checking around. Anything I should look for? I talked to a guy from Goldberg, Persky and White. Ever hear of them.
It must be very difficult for you. my heart goes out to you.
My closed friend has been diagnosed with pleural and pericardium mesothelioma 7 months ago..Doctors told us that he can not undergo any surgery, so we started Chemo with Alimta/Cisplatin.He is 44 years old and we live in Greece.He is also following a special nutrition and diet so as to boost his immunisystem.After 2 sessions of chemo, results are positive according to xrays, but i am so anxious about the Pet scans at the end of this month.I have also seen a lot through web for mesothelioma, and the best formun for mesothelioma cases is in mesothelioma website.
I have also found lot of people there who discuss the problems and helped me a lot with hospitals i am looking for to send my friend's medical reports..the site is http://www.mesothelioma-care-community.net
How is your situation?What kind of treatments have you followed?
I hope the best for you from the deep of my heart.
My significant other has been diagnoised in May with this illness. He is currently undergoing a trial drug along with alimta and cisplatin. He has never been in the hospital all of his life and this came from no where we can find unless when he was in the military in the early 1970's. Is there anyone out there who could tell me how they are doing with this illness? I don't see too many recent emails. Is there anyone who can give us hope and inspiration?
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 - 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
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.
I'm 43 and was diagnosed back in April after emergency open heart surgery in Match to remove a large mass that was attched to my heart and diaphram. It took 3 weeks for the pathology to come back to tell me what it was. I was never sick nor had any symptoms.Just a routine chest xray showed the mass. I just finished up with chemo on July 1st(cisplatin and alimta)I only went 4 rounds my body couldn't take anymore.If they have your husband on steriods to counter act the chemo, I suggest him staying on them.I demanded to be taken off of them because of the side effects and got extremely sick from the chemo. I didn't want find anyone on this site suffering from this cancer, it's been awhile since I saw any posts.I was starting to feel like I was the only one around who had this. I do hope your man does well on the treatments. My last ctscan and petscans came back clear and hopefully they stay that way for a long time. I had a very rare tumor(only 150 like it to date)so I don't know how much help or knowledge I can share,but if I can offer any please feel free to ask.
Thank you Candy for your response. It is very hard to find people who can understand this illness. Is any of the mesothelioma on the lining of the lung? Jim did get sick this last round of the trial drug SS1P and the cisplatin and alimta, but they increased his steriods in an IV and he improved greatly. We don't know what is happening, hopefully the doctors will tell us when we meet Aug, 19, 2009 at NIH (we do know though, that his body retained over 50% more of the trial drug then others in this protocol)- but right now he is recovering from the final six dosages of the trial drug, tired and lacks appetite. The next 4 months it will be the cisplatin and alimata only. What state do you live in Candy?
Well I need to get busy, will be back later. Keep the faith, nothing stronger then that especially during these trials.
I'm glad to hear he's doing well with the trials. I live in Massachusetts.Where are you at? Thank you so much for posting to the site...I was getting very scared.Some of the last posts were back on 2007 and i wasn't getting any replies to posts.Let Him(whats his name by theway?)know he has to eat!!!! And drink tons of fluids. I guess I'm done with any treatments for know(I did 6 weekes of radiation and 12 weeks of chemo after the surgery) It's just kind of a waiting game. The doctors can not give me any real prognosis as far as if it's gone or if it will come back. They are just going to do ct scans every 3 months. It's amazing how much the steriods do help with the side effects of the chemo. Keep my email on hand(firstname.lastname@example.org)just in case you have trouble on the website, it boots you off once in awhile for no reason. Remember everyday he's gonna get a little better :)
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
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, 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.
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 email@example.com or go to www.curemeso.org.
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.
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