NOCC
My doctor asked me to sign up for the Break the Silence walk, scheduled here in September (national ovarian cancer awareness month). I was delighted to hear that he thinks I will be well enough come September to participate in a 5K "race". He announced at Saturday's meeting that his wife will be driving the SAG wagon, so I'm thinking that even if I don't make it thru the whole event, I won't be stranded a mile and a half out from the finish line.
The URL for the national group is www.ovarian.org
Look on the right hand side for "Find a Local Chapter" and that link will take you to a page where you search for a local group. The D/FW one meets monthly. I think each chapter makes its own schedule, but you can surely e-mail someone and find out when/where they get together.
Carlene
Comments
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Easy to do
I and two other women from our support group participated in the Pittsburgh NOCC walk two years ago. It was hard-we did the "long" walk, and the temperature was a lot higher than usual, but we did it! It was a gratifying experience, and I'm sure we all feel a lot closer personally because we toughed it out. I highly recommend doing an NOCC walk with a group. The camaraderie promoted by the event makes it very worthwhile.0 -
Hello Carlene,
Glad that
Hello Carlene,
Glad that ovarian cancer is getting its just recognition.
I am definitely making plans to sign up as I write.
I myself believe it is very dangerous due to the lack or exposure ovca receives and many women, if they only knew more of the symptoms of this illness, may actually save their lives. There is more than breast cancer out here. So I think it is mine and all our responsibilities to get the word out that ovarian cancer is even deadlier than breast due to its placement within our bodies. It is usually difficult to discover until, alas; it's too late.
I'm actually going to a support group this evening and will actually be glad to represent our particular gynecological cancer. The director asked me yesterday what type of cancer did I have and before I could answer she already assumed and stated... "breast cancer?" I corrected her and replied. No ovarian. Initially I planned not to attend. but.....after that slip I was like... "Oh hell no, I'm going and I'll be there with bells on." LOL!
I guess you can tell you hit a button with this one.
Thanks again,
Sharon0 -
Thank you, Sharon and GE.....frommsfanciful said:Hello Carlene,
Glad that
Hello Carlene,
Glad that ovarian cancer is getting its just recognition.
I am definitely making plans to sign up as I write.
I myself believe it is very dangerous due to the lack or exposure ovca receives and many women, if they only knew more of the symptoms of this illness, may actually save their lives. There is more than breast cancer out here. So I think it is mine and all our responsibilities to get the word out that ovarian cancer is even deadlier than breast due to its placement within our bodies. It is usually difficult to discover until, alas; it's too late.
I'm actually going to a support group this evening and will actually be glad to represent our particular gynecological cancer. The director asked me yesterday what type of cancer did I have and before I could answer she already assumed and stated... "breast cancer?" I corrected her and replied. No ovarian. Initially I planned not to attend. but.....after that slip I was like... "Oh hell no, I'm going and I'll be there with bells on." LOL!
I guess you can tell you hit a button with this one.
Thanks again,
Sharon
Thank you, Sharon and GE.....from all of us and from countless others, as well. I know we don't like to hear the hard stuff sometimes, but the reality is that 22,000 women in the US will be diagnosed with OVCA this year, and 15,000 survivors will die. The survival rate for women diagnosed early is 90-95% (Stage I), but for late stage (III and IV) it's way, way less (30-35%). Early diagnosis is key, but because the symptoms of OVCA are so subtle, the majority of us don't have a clue until we have passed the opportunity for early intervention and treatment. By far, most OVCA is discovered at Stage IIIc. That's the norm....and it is unacceptable. Breast Cancer, on the other hand, is most often caught early, provided women have their annual mammograms done.
I feel like we really got shafted. I did everything I was supposed to: annual well woman checks, colonoscopies, mammograms, etc. And this is what I got for all my trouble - Ovarian Cancer.
Breast Cancer has received HUGE international attention and support, all of it directly attributable to the sister of ONE victim - Susan G Komen. Komen's sister, Nancy Brinker, started the foundation in 1982 because she felt that her sister might have lived, had her Cancer been detected earlier. And to date, the Susan G Komen Foundation has raised over 1.5 BILLION dollars for research and health services related to Breast Cancer.
We can be part of the same kind of movement to educate women and the public about Ovarian Cancer. We can save lives. How awesome is that?
Carlene0 -
This comment has been removed by the ModeratorHissy_Fitz said:Thank you, Sharon and GE.....from
Thank you, Sharon and GE.....from all of us and from countless others, as well. I know we don't like to hear the hard stuff sometimes, but the reality is that 22,000 women in the US will be diagnosed with OVCA this year, and 15,000 survivors will die. The survival rate for women diagnosed early is 90-95% (Stage I), but for late stage (III and IV) it's way, way less (30-35%). Early diagnosis is key, but because the symptoms of OVCA are so subtle, the majority of us don't have a clue until we have passed the opportunity for early intervention and treatment. By far, most OVCA is discovered at Stage IIIc. That's the norm....and it is unacceptable. Breast Cancer, on the other hand, is most often caught early, provided women have their annual mammograms done.
I feel like we really got shafted. I did everything I was supposed to: annual well woman checks, colonoscopies, mammograms, etc. And this is what I got for all my trouble - Ovarian Cancer.
Breast Cancer has received HUGE international attention and support, all of it directly attributable to the sister of ONE victim - Susan G Komen. Komen's sister, Nancy Brinker, started the foundation in 1982 because she felt that her sister might have lived, had her Cancer been detected earlier. And to date, the Susan G Komen Foundation has raised over 1.5 BILLION dollars for research and health services related to Breast Cancer.
We can be part of the same kind of movement to educate women and the public about Ovarian Cancer. We can save lives. How awesome is that?
Carlene0 -
This comment has been removed by the ModeratorHissy_Fitz said:Thank you, Sharon and GE.....from
Thank you, Sharon and GE.....from all of us and from countless others, as well. I know we don't like to hear the hard stuff sometimes, but the reality is that 22,000 women in the US will be diagnosed with OVCA this year, and 15,000 survivors will die. The survival rate for women diagnosed early is 90-95% (Stage I), but for late stage (III and IV) it's way, way less (30-35%). Early diagnosis is key, but because the symptoms of OVCA are so subtle, the majority of us don't have a clue until we have passed the opportunity for early intervention and treatment. By far, most OVCA is discovered at Stage IIIc. That's the norm....and it is unacceptable. Breast Cancer, on the other hand, is most often caught early, provided women have their annual mammograms done.
I feel like we really got shafted. I did everything I was supposed to: annual well woman checks, colonoscopies, mammograms, etc. And this is what I got for all my trouble - Ovarian Cancer.
Breast Cancer has received HUGE international attention and support, all of it directly attributable to the sister of ONE victim - Susan G Komen. Komen's sister, Nancy Brinker, started the foundation in 1982 because she felt that her sister might have lived, had her Cancer been detected earlier. And to date, the Susan G Komen Foundation has raised over 1.5 BILLION dollars for research and health services related to Breast Cancer.
We can be part of the same kind of movement to educate women and the public about Ovarian Cancer. We can save lives. How awesome is that?
Carlene0 -
Stage 2Bunknown said:This comment has been removed by the Moderator
I went for my pelvic, pap, and rectal in March of 2009 and had full blown ovarian cancer in May of 2009. Even then, the surgeon said he could not feel the tumor on the ovary, but I was getting very sick by that time. That's the problem, by the time the tumor's get big enough to cause you any distress, you are already in a stage 2,3, or 4.0 -
all too common!unknown said:This comment has been removed by the Moderator
I had my annual GYN exam which included a internal sonogram in Jan '08. Sept of '08 I am stage 4. What Carlene said is soooo true....when I turned 40 I had my mammo and a colonoscopy. Not because I was symptomatic but because I wanted to be proactive. I end up with ovarian.0 -
Hello Carlene,
I couldn't
Hello Carlene,
I couldn't help but ask how are you doing on your taxol maintenance?
Are you experiencing any significant symptoms now?
For me it has been 5 weeks now. The short cut that I would allow to grow a bit is now growing in spotty, so now I keep it clipped verrry close.
#2 I notice a bit more tingling sensation in my feet (not the hands so much, maybe because I use them a lot?) I also swear that my feet are looking a little darker under the sole of my feet.
I'm asking you this because I saw on your fb page the other day, something about your throat being sore and losing your voice? So am I. In two weeks I will see my oncologist again, check those numbers and go from there.
The other aggravating thing for me is that with each infusion of taxol (in which I understand steriods are given with it) I'm beginning to get that steriod/puffy effect...ugggggh!
Not complaining, but just comparing notes I guess. My numbers were at last check 36 down from 62, so we'll see....
Have a great day.
Sharon0 -
Thanks, Carlene~
I also am involved with NOCC!!
Just yesterday my husband came home with the flyer that was created by the local golf course.
In September, they are having the first annual "Susan Neighbors Ovarian Cancer Awareness" tournament! And $20. from each entry will be donated to the NOCC!!
($60 entry fee includes cart,lunch & prizes).
I'm very happy to be supporting this cause; and thrilled that the golf course here is participating in raising awareness. It has truly touched my heart.
So if anyone will be in the Lake Tahoe/Carson City area on Labor Day weekend, you can sign up and help "Break The Silence". I'm happy to say that I faxed the flyer to my oncologist's office, and the nurse there called and said she already has a foursome signed up!0 -
Hey, Sharon....msfanciful said:Hello Carlene,
I couldn't
Hello Carlene,
I couldn't help but ask how are you doing on your taxol maintenance?
Are you experiencing any significant symptoms now?
For me it has been 5 weeks now. The short cut that I would allow to grow a bit is now growing in spotty, so now I keep it clipped verrry close.
#2 I notice a bit more tingling sensation in my feet (not the hands so much, maybe because I use them a lot?) I also swear that my feet are looking a little darker under the sole of my feet.
I'm asking you this because I saw on your fb page the other day, something about your throat being sore and losing your voice? So am I. In two weeks I will see my oncologist again, check those numbers and go from there.
The other aggravating thing for me is that with each infusion of taxol (in which I understand steriods are given with it) I'm beginning to get that steriod/puffy effect...ugggggh!
Not complaining, but just comparing notes I guess. My numbers were at last check 36 down from 62, so we'll see....
Have a great day.
Sharon
I am getting
Hey, Sharon....
I am getting maintenance (monthly) Taxol infusions. I don't know the dosage, but it's lower than what I got when I was on active treatment. I have virtually no sife effects. I get a very little bit of tingling in fingers/toes once in a while, but no loss of sensation and nothing permanent. No nausea. No flu-like symptoms. I can't remember if you are in treatment, or if you are NED. If you are still in treatment, you are probably receiving a much higher dose than I am and Taxol is "famous" for causing neuropathy, so be sure and have your doctor take a look at your feet.
I have had 3 days of sore throat and no voice, but I think it's most likely the change in the weather, combined with sinus drainage.
I get steroids and Benadryl before each infusion, plus anti-nausea meds. They call it my pre-med cocktail. Since I only get them once a month, I don't think the steroids have had any lingering effect on me. They make me ravenously hungry the day of infusion, and the following day. Other than that, I haven't noticed anything.
I had labs done today and everything was great. My hemoglobin was up to 11 - the highest it's been since my surgery. I will get the CA 125 results tomorrow.
Carlene0 -
Hello Sharonmsfanciful said:Hello Carlene,
I couldn't
Hello Carlene,
I couldn't help but ask how are you doing on your taxol maintenance?
Are you experiencing any significant symptoms now?
For me it has been 5 weeks now. The short cut that I would allow to grow a bit is now growing in spotty, so now I keep it clipped verrry close.
#2 I notice a bit more tingling sensation in my feet (not the hands so much, maybe because I use them a lot?) I also swear that my feet are looking a little darker under the sole of my feet.
I'm asking you this because I saw on your fb page the other day, something about your throat being sore and losing your voice? So am I. In two weeks I will see my oncologist again, check those numbers and go from there.
The other aggravating thing for me is that with each infusion of taxol (in which I understand steriods are given with it) I'm beginning to get that steriod/puffy effect...ugggggh!
Not complaining, but just comparing notes I guess. My numbers were at last check 36 down from 62, so we'll see....
Have a great day.
Sharon
Just wanted to say - great news about you CA 125 xxxxxxxxxxxxx0
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