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Fighting Back..Anyone Out There?

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Tishthedish
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Subject: RE: fighting back..anyone out there?
Date: 07/17/2007

Hi Harriet & Colleen, 

I wish I had fought back when I had the chance.  I am more a lover, than a fighter.  The cancer I have is 3c well-differentiated Primary Peritoneal Cancer which is very similar to Ovarian Cancer and is treated the same way.  I had 6 cycles of chemo.   I have been in remission for almost one year, however, my last 3 checkups showed my CA-125 was "creeping up"   I like my oncologist and do trust her, I just don't know if she really is doing everything possible to save my life, because the HMO is always thinking about its bottom line!

On my last visit with her almost 2 1/2 months ago, she told me if the "normal" CA-125# is doubled I may be part of a phase 3 clinical trial, Thalidomide verses Tamoxifen.  Anyone know anything about this trial?   I wish I had known to ask about a "maintance chemo" program.  I too, am not comfortable with just waiting to see what happens.  I was told in no uncertain terms, this cancer will come back, so why don't we do all that we can to control the way it comes back!   

Because I belong to a giant HMO in CA and I feel like I don't have many choices about my care.  Don't get me wrong, I am very grateful to have insurance of any kind.  If I hadn't I don't know what we would have done to pay for all the care I have received and may still need to receive.  I will see my oncologist in August, cross your fingers....I send my prayers and HUGS to you both and everyone who is fighting this monster!!  We canl win this war!

Never go to a doctor whose office plants have died!   -Erma Bombeck 

your co-warrior, Tish

On 7/17/2007 Harrietg. wrote:

 

On 7/17/2007 Redboots wrote:

3C undifferentialed, 6 rounds of chemo, in remission..my doc told me now we wait and when it comes back chemo again....wait for it to come back? I dont THINK so.

Flew to seattle (i live in Alaska) last weekend and talked to Dr. Saul Rivkin (my new idol) who is very aggressive in treatment of ovarian caner, his own wife died from it 10 years ago so now its his passion, he is SO up there with research and treatment, Im so glad I went.

Anywho...I have 4 or 5 different medications I can take to PREVENT a reoccurance..some have worked some have not...anyone out there on maintenance hemo...what drugs are you on and whats the worst side affect.

Anyone taking weekly taxol? Loose your hair again? I had screaming leg pains first time (although my oncologist said it wasnt from the chemo, bullshit, anyone else experience this....appreaciate any feedback your willing to give, colleen 

 

 


hi! i'm in the same position as you: 3c dx'ed last june 06 & i also keep begging for some kind of maintenance therapy! i have zilch! in some places they give monthly carboplatin for a year, which will of course prolong your pfs by as much! so what did dr. rivkin prescribe? i can't stand the waiting around for it to come back! hoping to hear some feedback, harriet


 

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