Diane T And Harriet

Hey ladies thanks for answering back. Thanks for sharing you tx info Diane, you also sound like a strong lady and I continue to ask God to look out for you.

This morning I'm going to Anchorage to see a new oncologist. Im dumping my first guy because I had to travel all the way to seattle to get any options and then when I told him Saul Rivkin suggested I do taxol he's like "oh we dont need him I can give you taxol" frig that, I dont want to have a doc that I have to research everything myself and then fill him in...egad...whenever Im the smartest one in the room it's a very scary situation!!

 Hopefully this new guy is hip, I want the taxol, not crazy about loosing the hair again but mostly because my ears are cold! Saul told me I could tamoxifen too but I just asked him "knowing what you know of dealing with ovarian cancer for 45 years WHAT would you do?" He said take the taxol...

Beginning to understand concept of living one day at a time, because I've started a dialog with my husband and kids I think I'm beginning to work through some of the fear and sadness that this f cking disease creates. It  has made me realize that we all gotta go..but I sure dont want to die, yet I sure dont want to see my beloved husband go first, nor do I want to watch my remaining siblings or kids go...geez I just dont like any of the options...its hard to grow up and face life on life's terms... sometimes I wish I was dumb as a stick, like some of the people Ive met in life, they dont think at all of the future-or what things mean, they just live...so maybe Im the dumb one. As a nurse I've always hated to SEE people suffer now I know how they FEEL..its a humbling experience but in a sort of twisted way Im glad its happening....I've always thought that empathy connects us like nothing else and since feeling alone is one of the worst of all human emotions, and the major cause of suicide, anything that connects us emotionally in the end is a good thing...wow, heavy, I'm really into verbalizing this am....thanks for listening. Colleen

 

On 8/8/2007 Redboots wrote:

Hey ladies thanks for answering back. Thanks for sharing you tx info Diane, you also sound like a strong lady and I continue to ask God to look out for you.

This morning I'm going to Anchorage to see a new oncologist. Im dumping my first guy because I had to travel all the way to seattle to get any options and then when I told him Saul Rivkin suggested I do taxol he's like "oh we dont need him I can give you taxol" frig that, I dont want to have a doc that I have to research everything myself and then fill him in...egad...whenever Im the smartest one in the room it's a very scary situation!!

 Hopefully this new guy is hip, I want the taxol, not crazy about loosing the hair again but mostly because my ears are cold! Saul told me I could tamoxifen too but I just asked him "knowing what you know of dealing with ovarian cancer for 45 years WHAT would you do?" He said take the taxol...

Beginning to understand concept of living one day at a time, because I've started a dialog with my husband and kids I think I'm beginning to work through some of the fear and sadness that this f cking disease creates. It  has made me realize that we all gotta go..but I sure dont want to die, yet I sure dont want to see my beloved husband go first, nor do I want to watch my remaining siblings or kids go...geez I just dont like any of the options...its hard to grow up and face life on life's terms... sometimes I wish I was dumb as a stick, like some of the people Ive met in life, they dont think at all of the future-or what things mean, they just live...so maybe Im the dumb one. As a nurse I've always hated to SEE people suffer now I know how they FEEL..its a humbling experience but in a sort of twisted way Im glad its happening....I've always thought that empathy connects us like nothing else and since feeling alone is one of the worst of all human emotions, and the major cause of suicide, anything that connects us emotionally in the end is a good thing...wow, heavy, I'm really into verbalizing this am....thanks for listening. Colleen

Hi Colleen -

Good to hear from you. I know how hard it is to come to grips with everything. Like getting hit with a sledgehammer over and over. But we have to keep fighting the fight. Like I said, let your loved ones watch you LIVE and in turn you watch them live. I was  on the phone all morning with a girlfriend who was dx'd with lung cancer 6 wks ago and started her chemo. She is very depressed so we had to have a 2 hour pep talk. Let me know if you start the taxol and how you are doing with it. That looks like it will be my next option if this one doesn;t work. We are in different places with this. I relapsed and then it progressed.. That is what the hycamtin is for - relapsed cancer that other treatments did not work for. If the taxol can do it for you that will be wonderful!!! I was on tamoxifen for 9 months, but I had already relapsed when they put me on it. They were trying to get me to the 2 year mark (since last chemo) because if you go two years between treatments it will work better. What does Dr. Rifkin think of the tamoxifen???? It seems to help breast ca patients from getting recurrence. Was your cancer estrogen receptive???  The tamoxifen will only help if it is. Did you have any genetic testing. I know that I am BRCA1 positive. I think that can make a difference in your treatment, because from everything that I have read, your relapse rate can be higher if you have the gene.  Don't worry about being smarter than THEM - I feel the same way too. But I look at it as a positive. I can question everything they do and watch out for my body like no one else can. When I relapsed and then progressed I told the docs both times, I knew before they did. So just keep trying to stay one step ahead.

Sounds like you are getting through the rough patches. When were you diagnosed?? It seems like you go thru a greivng process, and depression and fear are 2 of the steps. YOu do come out the other side if you don't let it get its grip on you. And Harriett - did you ask about the tamoxifen?? It might be an option for you. I thought I read that they will not do the taxol for you. If you really feel that this is what you need, the FIGHT for it. But look into the tamoxifen if you are estrogen receptive.

OK girls - I'm going to shut up now and go dye my hair.

Diane

hi colleen&diane! isnt the internet fantastic! im thousands of miles away from my home    & can still read your postings! i am also brca1 but not hormone receptive, so that rules out the tamoxifen! a friend told me that having the gene could make u more receptive to your treatment, guess she got that one wrong! anyway, diane, was there a time after your first treatment that u felt great, even NORMAL again? cos thats how i feel, 10 months after finishing first chemo! i am pretty philosophical about it all, enjoying my grandchildren as much as poss, travelling and doing pretty much what i want; its hard to grasp that i probably will relapse! i will still discuss with my onc the taxol treatment u will be getting colleen but i doubt he will agree, i wanted carboplatin for a year & he didnt. i also had this weird experience of knowing about more clinical trials & new medicines than my onc: i can only guess that with so many patients(im always surprised at the numbers of people awaiting blood tests, friends & acquaintances who are in the same boat as us!) with so many different cancers and so many new treatments it must be hard for any dr. to keep up with it all! its all so very standardized that its not likely they can try just anything that pops into their heads or that their patients demand. thats all folks! harriet

 

On 8/8/2007 Harrietg. wrote:

hi colleen&diane! isnt the internet fantastic! im thousands of miles away from my home    & can still read your postings! i am also brca1 but not hormone receptive, so that rules out the tamoxifen! a friend told me that having the gene could make u more receptive to your treatment, guess she got that one wrong! anyway, diane, was there a time after your first treatment that u felt great, even NORMAL again? cos thats how i feel, 10 months after finishing first chemo! i am pretty philosophical about it all, enjoying my grandchildren as much as poss, travelling and doing pretty much what i want; its hard to grasp that i probably will relapse! i will still discuss with my onc the taxol treatment u will be getting colleen but i doubt he will agree, i wanted carboplatin for a year & he didnt. i also had this weird experience of knowing about more clinical trials & new medicines than my onc: i can only guess that with so many patients(im always surprised at the numbers of people awaiting blood tests, friends & acquaintances who are in the same boat as us!) with so many different cancers and so many new treatments it must be hard for any dr. to keep up with it all! its all so very standardized that its not likely they can try just anything that pops into their heads or that their patients demand. thats all folks! harriet

 

Hi guys -

I did feel good after the first treatment, but relapsed after 1 year. The tamoxifen has it's own set of problems (hormones you know), and the Gemzar wasn't too bad at all! I did pretty much anything I wanted and just dealt with the milder side effects. Compared to the taxol & carbo it was a walk in the park. This Hycamtin has side effects similar to the taxol & carbo. I have only had one treatment so far, so we will see what happens down the road. I do know of a clinical trial here in NY that is for women who have finished the carbo & taxol and have NOT relapsed so I was not a candidate.  As to  what you were saying about the Docs, I always say that there is a reason that they call it PRACTICING medicine. I hope that they have PRACTICED enough to get it right soon!!!!

I am really bummed out today - my hair started to come out big time. It thinned with the Gemzar, but my hair was really thick so it ended up lookin OK. Now with 1 treatment of the Hycamtin it is coming out in droves!!! My hair is long so I don't know if I should cut it short or just buzz it and do the scarf and wig thing again. Everyone I ask does not know what the Hycamtin does as far as hair loss. They have rarely used it in my onc's office. I will go online and try to find some info to help me decide what to do. Than God for the internet and e-mails. Hope you both have a wonderful day. Feel good and be strong!!!

Diane

 

hi diane! dont know what to say about the hair prob: i cut mine short before the chemo & it lasted about         4-6wks, it was pretty messy tho; it was pretty shocking to see myself completely bald at the end, can u handle it?   u mentioned a trial in ny for people who had not relapsed, what was the 3rd component? i m still looking for my miracle drug! on the light side, i m a great believer in ' laughter is the best medicine ' so if u want any jokes sent, post your email address (is that allowe?) or send private message! keep your spirit up & fight the fight, harriet

forgot to say, in europe they're pretty big on doxil, don't they use it in ny? which hospital r u at? harriet

Hi Harriet-

Thanks for the words of encouragement. I did the bald thing already. Took 2 years to grow back. When I didn't lose  my hair with the Gemzar I guess I had a false sense of security. I don't really care about being bald, I can handle that, it's just that it is another "in your face" reminder. Bad enough  that I put on twenty pounds with the treatments, tamoxifen, and surgical menopause, now I have to look in the mirror and see no hair too!! Last time I buzzed it all off right away.  Much more comfortable, plus you don't have the mess. Think I will cut it short this time because with this stuff it just might thin. (though i doubt it with the rate it is coming out)

I can no  longer get in touch with the person who did the clinical trial and I don't even have her last name. But I do know that it had to do with creating a vaccine against OVCA. I know that in Germany the vaccine is already in place. It might be worth looking into. I think you can find the info on the internet. Just type  Ovarian Cancer Vaccine into your search. 

Good  Luck!

Diane T 

They use Doxil here too, but after researching both, I sat down with my onc and we decide to go with the Hycamtin. My relapse is not in any major organs yet, only in numerous lymph nodes and some are larger than 3 cm. I chose not to go to Sloan Kettering for a couple of reasons. The first and major one is insurance. They only take one kind and make NO exceptions. If you want to go there you either have Blue Cross Blue Sheild or pay cold hard cash. I am divorced and self supporting. Second reason is I found that you are just a number. My mother-in-law was there and after they decided to do what any other onc would, they sent her back out to Long Island and had her do the treatments here. Some of  my docs were Sloan trained and they have a very large facility. You are treated as a person with a lot of warmth and caring. My doctor listens to me and includes me in treatment decisions, hence the Hycamtin vs the Doxil. My mother went to these docs 24 years ago for breast cancer  and never had a relapse and hasn't seen them for about 19 years or so. The docs and a nurse still remembered her when she came to a treatment with me. Nice reunion with hugs all around. So I am totally happy not going to a place like Sloan.

Doxil side effects can be rough with that hand foot thing. I knew that my personality woud not be able to handle that, and that was the first thing my doc said to me. So he really knows me, which is great.