Peritoneal Mesothelioma?

Does anybody know anything about Peritoneal Mesothelioma ?
I have a terrible story about a close friend that I can provide more information on later.
A friend of mine since high school (20 years ago) married a friend of mine since 6th grade.
The wife is 37, they have three boys and she was just diagnosed with Peritoneal Mesothelioma.
This all started less than 2 months ago.
The doctors are telling them that chemotherapy is not even an option and best case senario maybe 2 years!
Things are moving so fast and so little seems to be known.
Please respond with any knowledge, insight or direction.

Malignant peritoneal mesothelioma is an extremely rare condition. Only 100 to 500 cases are diagnosed in the US each year, making up less than 30% of all mesothelioma cases.

Peritoneal mesothelioma is a cancer affecting the abdominal lining, or peritoneum (paira-tin-e-um), which is why is is sometimes referrered to as abdominal mesothelioma. This membrane supports and covers the organs of the abdomen.

Sorry to hear that. Shes too young..

Derek,
I guess we have been able to find out common information via the WWW.
What the friends are doing right now is attempting to find an alternate form of treatment, a second and third opinion, a way to combat the issue, rather than just toss in the chips .

Well if her insurance allows, tell her to go to the Mayo. Every American should have access to the best medical care in the world. I have known people that have gone there and have done well. Problem is people dont want to travel when thier sick but the Mayo does have a hospital hotel to stay in. Not all doctors went to the same school…

Get her down to the Mayo asap.

They have access to experimental treatments (which maybe out of state).

With this condition…time is not on your side I’m sorry to say.

Mayo in Rochester contact info

Edit: Derek posted just before me…IMO SCREW the insurance company…go now and ask questions later. REALLY!

BrianK,

Thanks for the link.

I have reviewed the site and forwarded info to friends.

Check your private messages.

Thanks BrianK

Looks like Mayo sees more then average medical center. Cruise around this website and give me a holler if there’s anything I can provide. Kurt (They happen to be my employer)

http://www.mayoclinic.org/mesothelioma/index.html

I’m on it now Kurt, thanks

I was an Asbestods removal worker for years some time ago and I believe that Mesothelioma is an asbestos contact related illness. Did she work in a factory or a building that has asbesto’s exposure issues? I still have to go in every 2 years for chest xrays. It may take from 10 to 30 years for something to show up after being exposed. Asbestos was so widely used for fire proofing bcause of its industructable qualities. Unfortunatly the body can not rid itself of the fibers due to this industructability. I am sorry to hear about your friends situation. Reading about it make me worry about my future also.

StayNChargeBob,
We are lacking any excuses.
She is only 37.
She has basically been a stay at home mother for 16 years.
No factory history, no asbestos exposure.
I actually have to wonder how much of this the rest of us were exposed to growing up in older home?

Drake as you probably read its very hard to diagnose this type of cancer. I would certainly seek another opinion. Keep us informed.

This is serious stuff. Mayo is fine, but there is also another choice American International Hospital in Zion, Illinoise ph 1-800-FOR-HELP. Besides conventional cancer treatments they also utilize detoxification procedures, nutritional therapy, chiropractic, emotional counceling, and other alternative procedures. Their success rates for CA are generally higher than conventional chemotherapy procedures alone. Encourage your friends to call them and look into it.

We’ll be remembering her in our prayers, too.

[quot} Derek posted just before me…IMO SCREW the insurance company…go now and ask questions later. REALLY!

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I agree with Brian, insurance be damned, this is a ‘all chips in’ call!

I’m sure this is all stuff you already know but here’s the definition out of Mosby’s Medical Dictionary:
a rare malignant tumor of the mesothelium of the pleura or peritoneum, associated with exposure to asbestos.The lesion, composed of spindle cells or fibrous tissue, may form thick sheets covering the vicera.

If there is a possibility that an exposure to asbestos has coused the problem, there are doctors that specialize in asbestos cancers. Perhaps a search on the doctors that treat these cancers may provide some options.

Thanks to all the guys and gals whom have offered insight, through posts and PMs.
It is finally happening. Sue is going to Mayo tomorrow!
I do not want to overinvolve anyone, but if you are interested, the following site is Sue’s diary:
CaringBridge
Click on “visit” and type in suesegl.
Thanks again everyone, just keep praying!
Repsectfully,
Joe

I’ve been following along in Sue’s Journal. I’ve taken the liberty to post latest post here. The complete journal can be seen by following the directions a couple posts above.

SATURDAY, DECEMBER 10, 2005 06:42 AM, CST

Hi to Everyone,

I know everyone has been coming to this sight to see the updates. I hesitate to update until I have definite information so I apologize for no updates since Friday.

After hearing from the Mayo on Wednesday, we had different things we were in the process of researching and Sue and Steve have made their decision on the course of treatment.

Sue will start chemo from the advice of Dr. Buckner at the Mayo and also the doctor in Omaha. Before receiving the chemo, she needs to go through 5 days of a vitamin therapy, and a day of steroids. Her chemo will begin at the end of all that. Dr. Buckner said that she would be able to receive the chemo therapy here in the Twin City area. We aren’t sure where yet, but it will help to not have to travel to the Mayo for that.

Sue will receive 3-4 rounds of chemo and there are 21 or so days in between each round. Technically this first part will take 3-4 months. After those rounds of chemo Dr. Buckner will do some tests and make a decision on whether or not Sue will undergo another surgery. The doctor in Omaha has confirmed that he would perform exactly the same treatment plan, so we feel confident that this is what the treatment plan should be.

Sue continues to feel good. She’s been busy getting ready for the holidays, and even did a “Thursday, Girls Night Out” this last Thursday after having lunch with myself and our other sister Amy.

Lewis, Nick and Isaac are doing fine. Lewis is handling the 2 casts on his wrists with no extra problems; his casts will be on for 4-6 weeks. The boys are busy with school, hockey and just being good kids!

Steve is awesome! He is doing a great job at keeping the wash caught up, keeping the kids on track, and filling in where Sue can’t.

The only other thing I want to inform everyone of is that Sue and Steve’s friends and family are in the process of planning a fundraiser on February 26, 2006 at O’Garas on Snelling in St. Paul. Mark your calendars! There will be a silent auction, raffle tickets and an admission fee will be charged. All of the proceeds will go to Sue and Steve’s family to use for whatever they choose. Sue and Steve have been informed of this and they are very taken back on the idea of all of this attention they are receiving. We have had such an overwhelming response, and people want to know what to do and how they can help, so Sue and Steve’s friends have been busy setting this all up. Of course, Sue’s comment after she digested it a little bit was, “well, we could call it a “PARTY” rather than a fundraiser!” That’s our Sue!

There also has been an account set up at; Pinehurst Bank, 757 Cleveland Ave S., Suite 100, St. Paul, MN 55116-1301, Attn: EAD for Segl Benefit Acct.

Any ideas or donations for the silent auction and fundraiser can be directed to Paul Bredemus – 651.485.8494.

I think that sums up everything for now. Thanks so much to everyone for your love, support and especially your prayers. There is no possible way that Sue, Steve, the boys and the rest of our family could go through this without all of you! The support has been truly amazing! Thanks soooooo much and I hope everyone’s Holiday season is special. We sure have been reminded that every day is a blessing!

Take care and Merry Christmas, Julie

http://www.caringbridge.org
If anyone has this post flagged in their favorites and consiquently is looking at it now, go to the website above.
Click on visit and enter suesegl
Optimism is abound with fear still in the shadows.
Thanks to the IDAers that have taken an interest and contributed thoughts and advise.
cheers