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diagnosis-mesothelioma


utahLisa

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Hi, I posted three months ago looking for information about pleural effusion for my mom. Well, it was a perfect three months and doctors were certain there was no cancer as her CT scans were normal and blood work was normal. She had the fluid drained and she was hopeful it wouldn't recur. Last week, she started having chest pain and was admitted to the hospital. After discovering some abnormal tissue on the chest cavity, they decided it was time to do a thoracotomy. They diagnosed her with mesothelioma, second stage. She will get to go home next week and begin chemotherapy. We are all so shocked by this news as mom was perfectly healthy all of her 66 years. I am thankful for this site and am begging for any information you can give me as to how to be there for my mom, what to expect from chemo, what eases the side effects of chemo and what new treatments are out there. I know that is a lot to ask but if anyone has some time, we would be so grateful. I am so sorry for all of you suffering from this disease and those watching loved ones suffer. I guess God doesn't promise us a comfortable journey, just a safe landing!

Thank you so very much, Lisa

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Lisa,

My cancer is of a different type, but the things I take are mainly to build up the immune system. You can check them out by going to MY STORY “Ernie's Story stage IV ”. I think a strong immune system helps with any cancer.

Stay positive, :)

Ernie

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  • 3 weeks later...

Lisa,

Our story is very similar to yours. My father is 69 and extremely fit. We were shocked to hear Mesothelioma III stage.

My dad is taking Altima (chemo). He has had 3 treatments, one every 3 weeks, and his pain has been reduced greatly. You could see the tumor on his back (had grown through his ribs) and it is noticably smaller. He will go back for more scans after the next round and they will give him a break from the chemo. We don't know what will be done from there or whats available. It seems hard to find information from folks about Meso. Maybe because its rare.

If your mother is given Altima I can tell you about some of the side effects as I'm sure many here can. After the first round of chemo my dad didn't feel good, but other than that it was okay. Since further treatments, he has developed sores in his mouth and a terrible rash. The rash doesn't itch, just looks horrible (big red blothes). His appetite is not good. That seems to be a problem not only with the chemo but with this cancer. Food does not taste right to him. He says things taste really sweet alot of the time. He has a hard time concentrating and is REALLY cranky. He also got shingles. We caught them the first day which was a real blessing. It seems if they are treated within the first 48 hours you are more likely to stop them in their tracks.

One thing to be aware of when your mother is taking chemo is that it's easy to get infection. My dad was moving firewood (slowly one piece at a time)finished and thought no more of it. The next day where the wood had roughed his skin there were red dots. He immediately started a round of antibiotics.

I wish I knew more. As we proceed I'll pass on what I find out.

If you don't mind giving your Mom's first name I'd like to pray for her and you. I know now how difficult it is to hear this kind of news.

Lisa from Ohio

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My mom was diagnosed Nov. 2005. She was in stage IIIb and was given 6-12 months to live. My mom has been healthy her whole life so this was just such a shock. They had to remove 7 liters of fluid. You only have 5 liters of blood. She was in the hospital for two weeks. We then went to Boston, Dana Farber to meet with oncologists and surgeons. My mom cannot have surgery because her meso is rare. It actually wrapped around her esophagus and went behind her lung and is very close to the heart. She had to have a feeding tube last year because her esophagus was only the size of a pencil is a spot. My mom had 8 rounds of cisplatin and alimta. The cisplatin was the hard part. She got nuerapaty really bad. Last May they didn't think there was anymore that they could do and then in July her cancer was deemed inactive!!! She then just had alimta. She just had fatigue and the neurapathy. The side effects really weren't that bad. In Jan of this year we found out that the cells were active and she is now on Gemzar. She is having a hard time with the gemzar. She is tired. She had to have a port put in two weeks ago because she had no veins left, which is what the gemzar does. She is having such a hard time mentally with the gemzar. She has been talking about giving up the chemo. I think she was just going through a down stage. She had her two shots, nulesta and something elso which boosts blood cells. She feels human again when she has these every three weeks. She has scans this week and we will know if it is working in two weeks. If it is not working I don't think she will continue. This is a tough tough disease. There is no cure but with surgery you can get a chance. On my other meso support site a friend's husband was diagnosed almost three years ago and is doing well. He had to have radiation last summer but he just went back and it is still inactive. The other web site is www.mesothelioma-care-community.net. Go to our stories after registring. I have been looking for people on this web page dealing with meso and haven't been able to find anyone. It will be nice to be able to talk. My e-mail address is Farina01238@verizon.net. Feel free to contact me. I in no way have the answers but I have done hours and hours of research on line and in the hospital libraries. I make sure I ask any question I don't understand and make sure I understand everything. I have a folder with tons of notes and I get all medical records so we have out own copies. I am praying for you. Love, STeph

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