fighting back..anyone out there?

On 7/17/2007 Tishthedish wrote:

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

 

Tish-

My girlfriend Pam has Stage IIIB Ovarian, done with the chemo just two weeks ago. We have a great gyn/oncol who is a major clinical researcher with GOG. He is a fellowship director with UC Irvine and performed her surgery.  His name is Dr. Michael Berman out of Long Beach, California.  He takes Blue Cross HMO and others as well.  They have done everything for her and are caring and optimistic as to her chances. The HMO has provided her with a team of Drs.- oncologist, nurse practicianer, gastroenterologist, pulmonary specialist, primary care Drs. and others,  it seems that no expense is spared. You must try to get in touch with Dr. Berman if you need a second opinion. Please contact me if you have any questions. I am dedicated to help her or anyone who has this disease.

Rick 

Harriet- you and she are almost within a week of each other's schedules.  Pam will be getting the results of her 2nd Pet/Ct scan (after 6 rounds of Carbo/taxol) on the 15th from her gyn/oncol Dr.  As far as a "maintenance program", we aren't sure of our options, partially based upon the Pet results, but, as you feel, almost certainly we will want to know what we can do to prolong the disease-free or stable prognosis.   Have you had any different side-effects of a cumulative nature attributed to the chemo? She was extremely fatigued last week unlike prior weeks, but she is up and going good now. Do you have Blue Cross HMO?  Have a world of good and very little bad about them but would like to compare experiences.