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Peritoneal mesothelioma

sandigram46
Posts: 1
Joined: Jan 2010

Are there other military out there with peritoneal mesothelioma?

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hi Sandigram
I saw the word PERITONEAL & clicked on your blog. I have Primary Peritoneal Cancer - it that similar to yours?

michellerrr
Posts: 4
Joined: Mar 2010

sorry - computer problems! post listed several times!

michellerrr
Posts: 4
Joined: Mar 2010

Hey,
Yes, there are others with PM....sadly to say! My husband was diagnosed in May '09. It has been almost a year and we are still shocked. We live in Tx - near MD Anderson. They did not have a specialist who treated PM! We went to Omaha, NE to Dr.Brian Loggie. My husband, David, had a massive surgery, followed by chemo every three weeks (ongoing). He is a Fire Chief and was exposed to all types of things in the early years....resulting in PM - we guess. Please let me hear your story. I am so sorry that this dreaded diasease has entered your world. But, I am glad to find someone to compare notes with and to share victories! God has blessed us throughout this ordeal and layed out the right people (docs) in our path. Anxious to hear from you!

Michelle

michellerrr
Posts: 4
Joined: Mar 2010

see above

lacemom
Posts: 3
Joined: Sep 2008

Michelle, so glad your husband is hangin in there! Finding specialists & info for meso is tough. My daughter was diagnosed with peritoneal mesothelioma in Dec. '05. Today we celebrate her 4th anniversary cancer free! If you'd like to talk contact me at topbait@msn.com or for meso info & a support community go to www.curemeso.org
Janet

baseballgirl71
Posts: 11
Joined: Dec 2011

Just curious how your duaghter was doing! I was diagnosis with peritoneal mesothelioma 3 months ago, and would love to know if someone else is beating this.

Elissa

onemore
Posts: 57
Joined: Jun 2010

Dear Elissa

I came across your post. My dad had mesothelioma. If you still need some information maybe I can help. Where were you exposed to asbestos? I can share my story with you if you would like.

Regards,

Onemore

michellerrr
Posts: 4
Joined: Mar 2010

see above - again!

fearbob
Posts: 21
Joined: Apr 2010

hi im new here and dont understand the whole message board thing.

but hi my names bob and im very tired and stessed knowing 2 weeks ago mu girlfriend who i want to marry and she was just diagnosed with this PM, im on about 8 hours sleep in 4 days and crying alot.(praying too )

im so lost here, she means the world to me and this happens!

I pray everyday, last nite she had drains and a vat done and is in ICU now.

a few minutes ago the nurse told me she ate, yet its hard for me to eat!

we met online 3 years ago and fell in love

im lost here please help me to find my sanity again, today is day 4 in the hospital and she will be there another 5 atleast.
the worse part is im out of work over a year and trying to make ends meet.
im 45 and shes 49
they remover 900cc's of fluid from her lung and 5.8 liters of fluid from her belly.

i may be ranting on but i dont know, just want someone who understands me to talk to.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have only just seen your post. Please don't be so frightened, having cancer doesn't always mean death. The doctors and surgeons are so skilled today there are 100's of different treatments they can give your girlfriend. Your girlfriend is truly blessed to have you besides her all the way. You don't realise how much comfort she'll getting from knowing you are there waiting for her. I wish the person I was in love with could be there for me but he can't, so I feel I am on my own. You are so lucky to have found each other :) Be thankful for that blessing.

I was diagnosed last year at 49 with Primary Peritoneal Cancer. I'm not sure if it the same as your girlfriends, but the symptoms sound the same. I had 3 liters fluid removed from my right lung but the fluid in my belly went on it's own when I started chemo. I had 3 more chest drains before my chemo started because the fluid kept coming back. I have been on chemo, 6 lots every 3 weeks and now I am waiting for another CT scan to see whether the cancer cells have shrunk (I hope so)

Post back and let us know how she is doing and what the doctor has said about her cancer. Take care Tina x

fearbob
Posts: 21
Joined: Apr 2010

thanks for responding tina, I talked to the oncologist and he told me its peritaneal carcinoma and after 18 days she was in the hopsital with drans in her lungs then after 2 days home she was rushed back with numonia.

next week the are putting in her port then the following week staring chemo.

i had a full beard and shaved it all of and told her if she was going to be bald i was going to be bald with her!
i was told its stage 2 and they changed her surival rate from 60% to 70%.

im praying for you and the rest of the members here as this board has helped me to undestand what i didnt before.

thanks everyone and I'll still be here reading

augigi
Posts: 89
Joined: Dec 2009

That was very kind of you Bob. I am glad it sounds like the news is a little better than you initially thought. Does that mean it's not peritoneal mesothelioma, but peritoneal carcinoma?

fearbob
Posts: 21
Joined: Apr 2010

peritoneal carcinoma be the bad boy

augigi
Posts: 89
Joined: Dec 2009

Oh well that's more encouraging - mesothelioma is a very nasty cancer. I got confused by the thread title.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Mine is peritoneal carcinoma. Mine is stage 4 cos I got the fluid around my lungs too. I have just finished 6 rounds of carboplatin & taxol. They call that the "gold star" standard treatment. I did lose all of my hair but now I have finished chemo it is starting to grow back. I don't know my survival rate, if you sat 70% that sounds good to me. I am waiting to have a scan and final blood tests.

What was your girlfriends CA125 count?

Take care Tina x

fearbob
Posts: 21
Joined: Apr 2010

im not sure what CA125 is.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

CA 125 is sometimes called the "tumour marker" It is a blood test that tests the protein that the cancer cells give off. It gives a number & someone without cancer their number will be between 0 - 35. When I was first diagnosed my CA 125 was 1119. Now after all of my treatment it is 65. The chemo is designed to bring the numbers down & after each chemo the numbers come down as you have to have a blood test. Ask your doctor about it next time.

Tina xx

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

CA 125 is sometimes called the "tumour marker" It is a blood test that tests the protein that the cancer cells give off. It gives a number & someone without cancer their number will be between 0 - 35. When I was first diagnosed my CA 125 was 1119. Now after all of my treatment it is 65. The chemo is designed to bring the numbers down & after each chemo the numbers come down as you have to have a blood test. Ask your doctor about it next time.

Tina xx

fearbob
Posts: 21
Joined: Apr 2010

well she gets her blood tested on the 10th so I'll ask the doc

thanks for explaining it to me, i told her as well what it was and she wants to know now

fearbob
Posts: 21
Joined: Apr 2010

im not sure what CA125 is.

fearbob
Posts: 21
Joined: Apr 2010

ok the number of CA-125 is 219.4

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

219.4 is quite a low number when you have just been diagnosed. The normal range is between 0 - 35. I've heard of people being in thr 1,000's. Each time your girlfriend has her chemo they will take some more blood and the number will fall each time.

Being stage 2 is also good. I am stage 4 & most ladies are stage 3. At stage 2 she has a good chance at fighting it.

I wish you lots of luck. Keep strong. Cheers Tina

fearbob
Posts: 21
Joined: Apr 2010

tina thanks so much for helping me threw this , your added to my prayers and i will be popping in and out to read this board its just amazing !

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am glad I have helped you. You really should go on the OVARIAN CANCER board as there are some really nice ladies on there who will give you so much support. I spend most of my time there. You will also gets loads of ideas and be able to ask questions that I can't help you with. Take a look at the boards. Take care Tina

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