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Had my ileostomy reversed in Oct. - my August CA-125 was 3. This reversal has been a roller coaster trying to get somewhat regular again. That was a really long chapter I hadn't planned on! So - my last CA-125 Dec. 28th was 2.35...very surprised to say the least. I didn't think it would continue to drop...so, I opted out of a follow-up Taxol regimine, but know that Hissy_Fitz will be taking that route and I'm wishing only the best as my next CA-125 is due at the end of March. As my onc. said- the hardest part of being in remission is not doing anything to try and treat it. He's right. It's hard to let go of a treatment of all things. I've learned to focus and just rely on my faith when I think the deep end of the well won't stop.
I want you all to know that everyone of you inspire me and give me forward spirit. So even if I don't write on my 'page of the day', I'll read y'alls posts and at least stamp a smiley face on it...oh and those little stars for celebrations and also stars for the light in dark times too. We will battle and we will 'FIGHT LIKE A GIRL!!!' gotta love those teal T-shirts! Later Ladies, nice to meet you... Ellen
PS: Howdy y'all to the Texas ladies! We transplanted to NC 17 years ago from Dallas but I still manage to keep chicken fried steak on my menu!
Comments
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Hello Ellen
It is nice to read your story & to realise your CA 125 is still way below 35. I found it interesting to read how hard you've found it in remission "not having treatment". I've often thought to myself "I oftenwonder what it would be like to be in remission and not be having treatment?" You must be so scared and frightened that it will come back?
I am half way through my carbo/taxol regime and my CA 125 has dropped amazingly from 1119 to 156 in only 3 treatments. But I don't think I could ever feel at ease NOT having treatment?
I expect my oncologist will explain it to me when the time comes.
Keep in touch love Tina xxxxxx0 -
No treatmentTina Brown said:Hello Ellen
It is nice to read your story & to realise your CA 125 is still way below 35. I found it interesting to read how hard you've found it in remission "not having treatment". I've often thought to myself "I oftenwonder what it would be like to be in remission and not be having treatment?" You must be so scared and frightened that it will come back?
I am half way through my carbo/taxol regime and my CA 125 has dropped amazingly from 1119 to 156 in only 3 treatments. But I don't think I could ever feel at ease NOT having treatment?
I expect my oncologist will explain it to me when the time comes.
Keep in touch love Tina xxxxxx
I talked to my doctor about this. It is a very hard time for cancer patients when they make the step from constantly being monitored, tested, and, in fact, physically fighting the disease with chemo to doing basically nothing. It plays games in your head, but you begin to enjoy it once you get a few monthe behind you. I was hoping for more than 7 months, but that's the way it goes. Hopefully you'll have many, many years dancing with NED!
Marty0 -
Welcome!
Hi Ellen, welcome aboard, although I'm sorry you had to be in this boat too. I just read your personal story and am very inspired by your words!!!
You certainly have been through a lot and it is so awesome to hear you are NED. I don't know that I have heard of a CA125 of 2.35 before. I know that dancing with NED has it's own stresses (I did get 8 glorious months!!) but in spite of that I hope you can take some time to kick back and enjoy life.
Warm hugs,
Kathleen:)0 -
Feelings about IT coming backTina Brown said:Hello Ellen
It is nice to read your story & to realise your CA 125 is still way below 35. I found it interesting to read how hard you've found it in remission "not having treatment". I've often thought to myself "I oftenwonder what it would be like to be in remission and not be having treatment?" You must be so scared and frightened that it will come back?
I am half way through my carbo/taxol regime and my CA 125 has dropped amazingly from 1119 to 156 in only 3 treatments. But I don't think I could ever feel at ease NOT having treatment?
I expect my oncologist will explain it to me when the time comes.
Keep in touch love Tina xxxxxx
Hi Tina- when I was diagnosed I was like: 'OK - let's go..what do I do next..let's do it'. So I guess that's what will happen in my head when that time comes to do it again. I'm not scared really to tackle it again and I hope I don't have too but I've had some time now to gather some strength. I'm probably more sad if I think about it, and not for myself but for everyone else around me because I don't want them to be sad or scared. I also know that at some point my husband may be faced with chemo for his prostate cancer. Now I sort of know how he's felt for the past 8 years being in a state of slow remission. He told me he just has to 'learn' to not think about it plus he stays really busy with outdoor yard stuff. My newest positive thinking motto (besides tons of prayer & faith) is 'today is my hope for tomorrow and tomorrow is today'. That's my way of fighting off the negatives in my head that I find myself waking up with after a good night's sleep of all things - how crazy is that? Sending some positives your way + + + + + and to everyone else including our caregivers on this journey as well. Thanks for the welcome. Here's to robins and sunshine, Ellen0 -
WelcomeNCEllen said:Feelings about IT coming back
Hi Tina- when I was diagnosed I was like: 'OK - let's go..what do I do next..let's do it'. So I guess that's what will happen in my head when that time comes to do it again. I'm not scared really to tackle it again and I hope I don't have too but I've had some time now to gather some strength. I'm probably more sad if I think about it, and not for myself but for everyone else around me because I don't want them to be sad or scared. I also know that at some point my husband may be faced with chemo for his prostate cancer. Now I sort of know how he's felt for the past 8 years being in a state of slow remission. He told me he just has to 'learn' to not think about it plus he stays really busy with outdoor yard stuff. My newest positive thinking motto (besides tons of prayer & faith) is 'today is my hope for tomorrow and tomorrow is today'. That's my way of fighting off the negatives in my head that I find myself waking up with after a good night's sleep of all things - how crazy is that? Sending some positives your way + + + + + and to everyone else including our caregivers on this journey as well. Thanks for the welcome. Here's to robins and sunshine, Ellen
Hi Ellen,
Just saw your posting, and would like to say welcome, however; as each of us are, sorry it had to be in this manner.
My ca-125 number never got that low, the lowest mine ever was, I think was 6? Seems so long ago (currently a 49) at least last lab.
We are all fighters and lovers of life and have experienced the ups and downs of dealing with this disease and some of the mind games it plays with us.
Sharon0 -
EllenNCEllen said:Feelings about IT coming back
Hi Tina- when I was diagnosed I was like: 'OK - let's go..what do I do next..let's do it'. So I guess that's what will happen in my head when that time comes to do it again. I'm not scared really to tackle it again and I hope I don't have too but I've had some time now to gather some strength. I'm probably more sad if I think about it, and not for myself but for everyone else around me because I don't want them to be sad or scared. I also know that at some point my husband may be faced with chemo for his prostate cancer. Now I sort of know how he's felt for the past 8 years being in a state of slow remission. He told me he just has to 'learn' to not think about it plus he stays really busy with outdoor yard stuff. My newest positive thinking motto (besides tons of prayer & faith) is 'today is my hope for tomorrow and tomorrow is today'. That's my way of fighting off the negatives in my head that I find myself waking up with after a good night's sleep of all things - how crazy is that? Sending some positives your way + + + + + and to everyone else including our caregivers on this journey as well. Thanks for the welcome. Here's to robins and sunshine, Ellen
Thanks for sharing your story. I am so sorry that your husband is also fighting this battle. Stay strong and never give up hope xxxxxxxxxxxxxxxxxxxx0
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