CancerCompass message board discussion started by Redboots on 7/17/2007 http://www.cancercompass.com/message-board/message/all,14435,0.htm Mon, 08 Sep 2008 00:00:00 GMT Mon, 08 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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    Redboots Tue, 17 Jul 2007 00:00:00 GMT  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 Harrietg. Tue, 17 Jul 2007 00:00:00 GMT HiHarriet,      Dr. Rivkin is waiting for the results of my gentic testing and then he is going to call MY knuckleheaded oncologist and tell him what the plan is..we had discussed taxol each week, also getting some IP chemo which is what I wanted in the first place which my Doc also would not do...I also got a P.E.T. scan in seattle ( my doc did CAT scan) Dr. Rivkin says a PET scan should be done, so we did it. When he calls me this thursday Ill post what his advice is, all I know is Im not going to sit home and wait, Im going to do whatever I can and then if It dowsnt work out and I croak well at least I know I did what I could.   Redboots Tue, 17 Jul 2007 00:00:00 GMT I went to the Ovarian Cancer National Alliance conference in D.C. last week.  Lots of good presentations and drs. there.  They all said there is absolutely no data to support any treatment to prevent recurrence.  My suggestion is to get on a trial.  I am on GOG 218/Avastin trial.  Lucymullis Tue, 17 Jul 2007 00:00:00 GMT 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, TishOn 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  Tishthedish Tue, 17 Jul 2007 00:00:00 GMT Hi Colleen,So glad you found a great doctor. When  I was on taxol and carbo I had the killer leg pains. My doctor told me to get powdered glutamine and mix with water, Iced tea, juices etc. I would start drinking the day of Chemo and drink it for four days. (3X a day) It helped tremendously. Even though it is 3 years since I started the taxol, I still get the leg pains. Hope it goes away some day!!!Keep  fighting!!! Prayers and hugsDiane T. Diane t. Thu, 19 Jul 2007 00:00:00 GMT  hi! how much has it crept up?my drs also told me the same: it will come back! so we fight the fight on our own apparently! the key to your story is: well- differentiated: that's good! i've dissected the internet on dozens of sites, come to my onc with a pageful of questions to which he responds: not for you, not for you, trial, unproven etc....: so the question arises, if you are feeling fine at the moment & your QOL is the same as before, do you want to try something unproven? a dilemna indeed!harriet Harrietg. Thu, 19 Jul 2007 00:00:00 GMT  On 7/17/2007 Lucymullis wrote:I went to the Ovarian Cancer National Alliance conference in D.C. last week.  Lots of good presentations and drs. there.  They all said there is absolutely no data to support any treatment to prevent recurrence.  My suggestion is to get on a trial.  I am on GOG 218/Avastin trial.  hi again!are you on this trial for prevention or because your ca 125 went up?harriet Harrietg. Thu, 19 Jul 2007 00:00:00 GMT Hi Harriet, No I have poorly differentialted high grade 3C...Talked to Dr. Rivkin yesterday, he's still waiting for my results to come back. Talked about maybe taking tamoxifen...weekly taxol not sure yet...nothing really works in the long run I guess..am not a candidate for clincial trial now because I have no tumor...Someone mentioned Avastin but as I said as far as I know you have to have some measurable tumor to be elligible, yes?  Feeling good, denial is my daily friend, works for me pretty much. ONly when I think of my husband or not seeing my kids does my heart ache. The one day at a time attitude and Cymbalta are helping me get thru...going dipnetting for Red salmon next weekend and campiing, its sooooooo fun, you can pull 50 fish up in one day...hard work but a blast, hope all is well...colleen Redboots Mon, 23 Jul 2007 00:00:00 GMT  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   Do you happen to know what the 4 or 5 medications are that you can take to prevent recurrence?  What did Dr. Rivkin say the chances are of them working?To answer your question about leg pains, I took one round of Taxol before I had an allergic reaction and the leg pains were unbelievable.  They switched me to Taxotere and I didn't have any leg pains at all with that.Is anyone on any maintenance therapy and if so, what do you take?  Vixshannon Mon, 23 Jul 2007 00:00:00 GMT  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, TishOn 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   mistered Sat, 04 Aug 2007 00:00:00 GMT hi rick! hope your girlfriend is feeling fine now; the question is, will she be getting any maintenance therapy? we re just all unhappy that we re being left high and dry until a recurrence when we want to LIVE! & be cured ! our problem is being ignored! this is a cry for help! keep fighting, harriet Harrietg. Wed, 08 Aug 2007 00:00:00 GMT hi rick! hope your girlfriend is feeling fine now; the question is, will she be getting any maintenance therapy? we re just all unhappy that we re being left high and dry until a recurrence when we want to LIVE! & be cured ! our problem is being ignored! this is a cry for help! keep fighting, harriet Harrietg. Wed, 08 Aug 2007 00:00:00 GMT 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. mistered Wed, 08 Aug 2007 00:00:00 GMT