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Mom diagnosed w/ Mesothelioma

mommyto01
Posts: 1
Joined: Jan 2010

I couldn't find a group w/ this topic, since she was first diagnosed w/ lung cancer thought I could post here.

My mom has never been sick, never even complained about a headache in May she started w/ a cough but since my son had it also we thought it was allergies. In Oct we finally forced her to go to the dr and after x-rays they found a spot in her lung. Went to get an MRI and a mass was found, they sent her to get a biopsy and results came back w/ cancer. Mom was calm and still active just the cough and phlegm. Got a PET scan they found spots in small intenstine, spine, neck and a bunch of small ones in her lung. Got Brain MRI and she also has 5 spots. They changed lung cancer diagnosis to Mesothelioma. We are devastated as the more we read the prognosis don't seem that positive. A few weeks ago my mom was still doing everything around the house, babysitting etc Dec 31 was her b-day and she hardly got out of bed since then she looks worse...........Radiation of the brain is supposed to start next week but she looks so weak. My mom doesn't have insurance and state gov insurance has not responded, we have called emailed since Nov 20 and we still can't get an answer. Dr hasn't given her any kind of treatment or medicine until now w/ the radiation this week. My dad has had to sell all his tools, pawn some stuff so we can get money to pay for all the tests but now we don't have money for treatments :0( We don't know what to do......... Cancer center has been helpful in trying to get gov insurance by calling them everyday but that's about it.

Anybody else dealing w/ mesothelioma we can't find any support groups.

Anybody know of any treatments for her shortness of breath and energy decrease?

Thanks and sorry for making it so long

AJ

mysarial
Posts: 14
Joined: Dec 2009

I really wish we had our own board. This is a lung cancer, but it's not the same.
My husband was recently diagnosed as well. We do have insurance, so I'm not sure specifically
where to point you, but there are a number of Mesothelioma related info sites on the web with people ready to help. The best is MARF... http://www.curemeso.org/. There are advocates that will talk to you, and try and give you direction about medical treatments and steps. I've been working with one for my husband, and she's been very helpful.

Next, if you can find a link to asbestos, you can always pursue legal action. You need to file a case within a year of the diagnosis I believe. It takes some time, but getting a lawyer to review the case can't hurt. I'm not advocating anything relating to legal action, we haven't pursued it yet because my husband doesn't know where he could have been exposed; but it might be the right thing for your mother.

Also, try the Meso Resource Center. This is sponsored by a legal firm, but the information is helpful.

This is seriously an evil cancer. The treatments are limited, as is the prognosis for the patients. My husband started this process in October when the docs all thought he had pneumonia, at the end of October they figured it out, and by the time his PETs were analyzed, he was placed at stage 4. He went from a perfectly healthy 35 year old to a stageIV cancer patient with a 12 month prognosis, it's completely insane. I'll be praying for you.

All my love

augigi
Posts: 89
Joined: Dec 2009

Sorry to hear about your mom. My mother was also diagnosed with pleural meso, in March. She had a few months of thinking she had a chest infection, with several courses of antibiotics but not much else. Eventually she went back to the doctor and told him she needed a chest xray and then they did a CT and told her to come back tomorrow. She woke that night unable to breathe and went to the ER where they diagnosed a pleural effusion. They tapped 700mls fluid collection and diagnosed mesothelioma. Like mysarial, we had no idea where she was in contact with asbestos, although we did work it out after some time.

Unfortunately we had heard of mesothelioma quite a lot, it's not uncommon here in Australia. There are limited options, but definitely chemo is available (cisplatin or carboplatin, plus Alimta). The Alimta has been proven to improve survival in meso patients, and perhaps quality of life also. Mum did some chemo and coped with the chemo very well. Once she finished the 6 cycles however the cancer grew quickly, so now she is back on for a few cycles to see if it helps.

We have universal healthcare here, so I can't help about insurance info.

The shortness of breath is greatly helped now by home oxygen - they did a blood gas test and found that her oxygen level was very low so approved the home O2.

Has your mom had a biopsy to diagnose mesothelioma? It doesn't often spread to all those spots you mentioned, from what our doctor said and from what I have read. Make sure they have the right diagnosis, the treatments vary between types of cancer.

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