sbf815 Posted January 18, 2007 Share Posted January 18, 2007 My mom was diagnosed with mesothelioma in Nov. 2005. The meso was rarer than rare. It wrapped around her esophagus and she had to have a feeding tube in in Jan2006. September cancer was deemed inactive. In October she had her feeding tube out and she had a burning party on Christmas eve with all of her family. She had a CAT scan last week and chemo this week. The oncologist here thinks that there is thickening around the lung again. She gets a PET scan next week and if it is positive then we are off to Boston again. The options are more toxic chemo, radiation, and the EPP(extrapleuralpnuemonectomy) the left lung, lining are removed along with lining of heart and some of diaphram. The lining is then replaced with a gortex lining. At one time I thought the operation was the answer but it seems like lately I have heard of so many people having the EPP, having great prognosis and within months they found a lump in their stomach where the meso. traveled and within months they died. She was on alimta/cisplatin. She had 8 rounds of cisplatin and then got neurapathy. She has still just had alimta. I feel so bad for her. Does anyone have any advise? Quote Link to comment Share on other sites More sharing options...
kamataca Posted January 18, 2007 Share Posted January 18, 2007 I don't have any ideas on this subject, but I'm sorry you are back with this fight. You are in my pryaers. Keep us posted. Kelly Quote Link to comment Share on other sites More sharing options...
carolhg Posted January 18, 2007 Share Posted January 18, 2007 You and your mother are certainly being prayed for. Carol Quote Link to comment Share on other sites More sharing options...
sbf815 Posted January 19, 2007 Author Share Posted January 19, 2007 Thank you, you are all in my prayers also. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted January 19, 2007 Share Posted January 19, 2007 Prayers coming your way. Sue Quote Link to comment Share on other sites More sharing options...
sbf815 Posted January 19, 2007 Author Share Posted January 19, 2007 Is there anyone on this site who suffers from mesothelioma? I talked to my mom's surgeon and she said she probably is not eligible for the EPP. That is only to extend life and help with symptoms. My mom's quality of life is good right now. I guess we won't know anything until next Friday. I'm jumping the gun but I've been waiting for this to come back. Everyone knows how waiting is. You think you are just going to have an answer but cancer and death are unpredictable. I am praying for you all. This is just so hard to go through. There are so many up and downs. Stephanie Quote Link to comment Share on other sites More sharing options...
Don M Posted January 23, 2007 Share Posted January 23, 2007 I don't know much about that kind of cancer and its treatment other than what you have told us. You could ask Dr West about it. He and a very good surgeon at his hospital have treated at least one person that I know of for meso. http://www.onctalk.com/forum/ Don M Quote Link to comment Share on other sites More sharing options...
trish2418 Posted January 23, 2007 Share Posted January 23, 2007 Sorry to hear this, Stephanie. You and your mom are in my prayers. Trish Quote Link to comment Share on other sites More sharing options...
sbf815 Posted February 1, 2007 Author Share Posted February 1, 2007 So the cancer difinitely is back. There is a mass on her lung and in the pleura on the bottom of her lung right by the diaphram. I don't know if it is connected or not. The doctor looked horrible when he told us so I'm thinking this is bad. She has two lymph nodes involved. Her hilar lymph is a centimeter and her prevascular lymph node is enlarged. So the alimta is not working anymore. We go to Boston on Monday to see which option we choose. They are thinking different chemos, radiation which they really don't want to do if they don't have to, clinical trials. Her oncologist here said something about biological treatments and my mom saw something about nanotechnology. Has anyone heard of these? I know that there isn't anyone who has meso but we are all dealing with some form of lung cancer. Prayers to everyone, Stephanie Quote Link to comment Share on other sites More sharing options...
karenl Posted February 3, 2007 Share Posted February 3, 2007 Hi Stephanie So sorry to hear about your Mom. There is a drug being developed by an Australian company which has apparently had some clinical success with treating meso. I looked at it a couple of years ago for Mum, as it is being trialled for a number of different types of cancer. The website is www.solbec.com.au Not sure if they are doing any trials in the US, but might be worth looking into. All the best, Karen Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted February 3, 2007 Share Posted February 3, 2007 Praying for your mom and for the doctor's to come up with a good plan for her. Quote Link to comment Share on other sites More sharing options...
DrWest Posted February 4, 2007 Share Posted February 4, 2007 Stephanie, As Don mentioned, I and one of my thoracic surgical colleagues treat a fair number of patients with mesothelioma (considering the relatively small number of new cases out there each year), a very challenging cancer. Cisplatin and alimta is the standard and FDA-approved treatment for it, so her treatment thus far makes great sense. Unfortunately, we have very, very little long term success with mesothelioma, and there are no clear good options for recurrent disease. I would just raise the issue that an extrapleural pneumonectomy is for many and probably most patients a very aggressive, very significant surgery to get through, and I have had several of my patients who were symptomatic and quite limited forever after that surgery. Obviously, you and your mother will want to review the options with her doctors, but you are right to not underestimate the toll it may take on her quality of life, especially if she is doing pretty well now. -Dr. West Quote Link to comment Share on other sites More sharing options...
sbf815 Posted February 6, 2007 Author Share Posted February 6, 2007 The doctors in Boston have decided to give my mom gemcitabine. Can anyone give me any info on this re: side effects, effectiveness, etc? Thanks. The doctor's appointment wasn't as bad as we thought it would be. We just keep doing this. Hopefully it works but there still are options for treatment. Thanks everyone for your prayers. They worked!!! Stephanie Quote Link to comment Share on other sites More sharing options...
digital Posted February 13, 2007 Share Posted February 13, 2007 I am very sorry to hear about your mother. I don't know if this will help but I ran accross this article this morning and wanted to share it. Combination drug treatment helps beat mesothelioma People with mesothelioma - a form of cancer associated with asbestos exposure - have a higher survival rate when treated with a combination of two cancer drugs, a large multicenter study finds. Mesothelioma, a rare but aggressive form of cancer that occurs in the lining of the lungs, heart and abdomen, is associated with exposure to asbestos. There is no known cure. In the study, patients receiving pemetrexed and cisplatin - along with the vitamin supplements folic acid and B12 - survived nearly three months longer than patients getting cisplatin alone.... Read the full article here: http://www.news-medical.net/?id=21831 Quote Link to comment Share on other sites More sharing options...
sbf815 Posted February 15, 2007 Author Share Posted February 15, 2007 Thank you everyone for all of the info. that you have sent. It means a lot. Mom had her first dose of Gemzar yesterday. I haven't talked to her yet today but it seemed to go okay yesterday. Thank again, Stephanie Quote Link to comment Share on other sites More sharing options...
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