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Old 11-28-2005, 01:54 PM   #1
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onetruefriend HB User
after some info PLEASE

I will start from the begining my mother is 62 she has angina and for about 5 months her breathing was getting difficult anyway she assumed it was her angina and put doctors off until 4 months ago doctor said there was fluid on lung so they removed it and arranged for a biopsy which she had a week later anyway i took her for her regular checkup 6 weeks ago and to our shock surprise they took me in with her and told her she had malignat pleural mesothelioma . The whole family was devasted . At the moment life seems back to normal as doctors advised no treatment just regular scans and once it starts to grow she can start chemo but basically go and enjoy rest of your life . Anyway i want some truth full answers don't sugar coat it please! What are we to expect? Will she be able to care for herself? I am after the average life span of your relatives please?

 
Old 11-29-2005, 12:47 PM   #2
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Re: after some info PLEASE

First let me say how sorry I am that you and your family are dealing with this most challenging disease. I donít know if youíve read any of the other mesothelioma posts so I will give you a brief round up of what Iíve been through with this cancer. My experience is not typical but maybe it will give you hope.

Currently Iím 43 years old and I was misdiagnosed with adenocarcinoma (meso cells are often mistaken for adeno cells) of unknown primary 10 years ago. Like your Mom I developed fluid around my lung in the pleural lining that turned out to contain malignant cells. They suspected metastatic breast cancer so I was treated with Tamoxifen and Lupron for about a year. The fluid came and went during that time and started to get worse so I was to start chemo but before I could, the fluid cleared up on its own and I was feeling fine. My doctor in MI told me we would take a wait and see approach.

Fast forward to 2002 and the fluid returns. My new docs in CA think that itís not cancer after all just an ideopathic pleural effusion. I take Vioxx for the inflammation and over the next couple of years the condition waxes and wanes. For the most part I feel perfectly fine. In the summer of 2004 I developed a lot of stomach problems and go for an upper G-I where pleural thickening is noted and only a very small amount of fluid.

After weeks and weeks of tests I was finally diagnosed as having mesothelioma with the most aggressive cell type. My local oncologist referred me to one of the countryís top specialists in Los Angeles, Dr. Robert Cameron, who recommends surgery to remove the lining of my lung, a procedure he is an expert in. I start a long journey of getting opinions from other major cancer centers and meso experts. My disease remains stable during this time and the surgeon is concerned that by operating he might cause the cancer to spread. So since my official diagnoses in Nov. of 2004 I have only had radiation treatment to manage pain which only became a problem back in Mar. of this year. I do not handle narcotics well so I opted for radiation to help with the pain. Today I am pain free and feel fine.

I would highly recommend that your Mother get a second if not a third opinion from a doctor who specializes in this disease. Too often oncologists who are unfamiliar with the condition will just give up. Donít assume the worst right now. Itís true that some people suffer greatly and go very quickly but Iím living proof that it isnít always that way. There have been many others who have lived 10, 15, 25 years after diagnosis with various treatments.

Just like any other cancer you can go in a matter of weeks or you can live years with the disease. Everyone is different. Your Mom sounds like she is in otherwise good shape and you should not assume the worst. A positive attitude goes a long way.

As you research online you will find many sites that are put together by law firms. They tend to play up the worst of the cancer. Do a search for research organizations and you will find a great deal of info presented in a more balanced light. I would happily give you their URLs but this site prohibits that.

Do you know what cell type she is? This will often give a better idea of how quickly the disease might progress but again not always. I have the most aggressive cell type and if I were to believe everything I read, I should have been dead a long time ago.

What part of the country are you in? I can suggest physicians in many different locations who specialize in meso.

I apologize for the length of this response. If you have any questions please donít hesitate to ask me. I will be more then happy to try and help.

Take care and God bless.

Sincerely,
Antoinette

 
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Old 12-01-2005, 01:12 PM   #3
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Re: after some info PLEASE

I am in england and it is epithiel type . It is hard not to take in every thing you read . The doctors have basically said thats it enjoy your life the best you can and once you start to feel bad pain or choose to start chemo we will then start it .She seems fine and says she feels ok but she says she can feel some thing is not quite normal . She gets like what she says is muscle ache at the bottom of her ribs of affected side (left) and some times her back aches but she is not in pain !You are probably the longest surviver i have heard of especially you feeling so well . i am pleased for you and hope your life continues to be as long as possible.Thank you so much for your reply .

 
Old 12-01-2005, 06:32 PM   #4
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antoinettev3 HB User
Re: after some info PLEASE

I have read posts in other forums from people in England who have run into the same attitude with their doctors. It seems that Mesothelioma is somewhat given up on and treatment is only offered when it becomes problematic.

With your Mom's cell type, age and so far no known metastasis she has a few different options. Of course it all depends on how aggresive she wants to be with the disease. How does she feel about it all?

I chose to take a much more conservative appoarch since my tumor seems to be growing so slowly. I had the same pains as your mom up until March of this year when they started to get worse but thankfully radiation has elminated it all together.

I hate to see her doctors take such a passive and somewhat defeatest attitude. It's not uncommon as it is a very difficult cancer to treat but that doesn't mean that one should just throw up their hands and wait for the good Lord to call them home, unless that's what they really want. It should be the patient's choice not the physician's.

I will pray for you and your Mom and hope that she will get the care she needs and wants.

You might try contacting:

Dr. Steven E. Mutsaers, Centre for Cardiopulmonary Biochemistry and Respiratory Medicine, University College London Medical School

From a letter dating from 1998 he was the Secretary of the International Mesothelioma Interest Group (IMIG) and might be able to put you in touch with experts in the field that are in the UK. I don't know if he is still with this organizaiton but it wouldn't hurt to check it out.

Good luck to you and your family. I pray that your mother will do well and that she will prove her doctors wrong and live for many more years.

Sincerely,
Antoinette

 
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