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Questions and update...

TheBean's picture
TheBean
Posts: 9
Joined: Sep 2006

Hi all,
I haven't written anything in a long time for many reasons - not least of which is the tumor pressing on the nerve making it painful to sit for long!

Question (s)... Has anyone tried or have any opinion any of the following supplements...

Beta-Glucan
Ave or Avemar (depends on your country)
Grape Seed Extract

My update...
Since radiation, surgery and 12 rounds of FOLFOX did not get my cancer, I was switched to Camptosar and Erbitux. Worked great at first, then not so good. Avastin was added in and it worked good for a while. Unfortunately, not long enough. We were hoping to attack some of the tumor in the liver with radio frequency ablation but it turned out I had a tumor in the pelvic area that the PET scan did not see. CT showed it and a biopsy confirmed cancer. So - on to Xeloda pills.

My doctor wanted me to try Vectabix (new from Amgen) but Blue Cross denied it. We were going to appeal but just then, BC decided that I was no longer working enough hours to qualify at work so they are switching me to COBRA... I was told on Oct. 31 that my policy would be "cancelled" on Nov. 1 but then after the COBRA goes into effect, they would go back and pay for services rendered so I would not really have a lapse in coverage.

I finally got the paperwork for COBRA but the odd blessing that occurred is this.. if you called BC right now they would say I was uninsured, so Amgen is making the drug available to me under one of their assistance programs. Once the COBRA kicks in, we can appeal to have BC cover treatments but if they won't, I am in Amgen's already in the program. Strange the way things work out. Also, I had no warning so I was not able to get in an order of ostomy supplies before the "cancellation". Just then, a really generous person posted a message on another message board about supplies she did not need. They are the correct sizes for me and she sent me a box of stuff - enough to easily hold me for a couple months!

It is truly amazing how much goodness is out there and how much assistance is available. The unfortunate part is that at the time we are hit with probably the worst thing possible and may be functioning at less than full strength and abilities is the same time we have to be strong advocates for ourselves.

Thanks to all of you for your postings - I have read many even though I have replied or commented on few. I have found many good tips and many sources of inspiration to help me stay positive.

Truly somthing to be thankful for this Thursday!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

You are right, dearheart...I had some of the same "bad to good' experiences!

After you vanquish the beast, you may think about helping others, like I did. I have a few unofficial and a few official designations now. Sometimes a success story can make the difference between a positive attitude, and a feeling of being lost and alone.

I, sadly, do not know alot about these supplements. I DID, however, drink alot of Welch's grape juice during my treatments, tho.

Now, past treatment, I am looking at pro-biotics...specifically the 3 active cultures that Dannon put into their new yogurt...but that is just to re-populate my flora in my colon.

I am sending big, strong, healthy hugs to you....remember, turkey has that stuff in it that makes you feel good...Licopene(?)...darn chemo brain!!!!!

Hugs, Kathi

CAMaura
Posts: 719
Joined: Feb 2005

Beta-Glucan and Grape seed extract can be Googled for info. You can rerfine your search by ising specific words in quotations: say, "Grape see extract" and "cancer". Hope this helps a bit and good luck with the new Amgen drug. Take care - Maura

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