i'm new-and afraid
Comments
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I know a woman whose
I know a woman whose experience has been almost identical to yours, except that she is now 11 years out from her initial diagnosis. Her newest tumors are in her back. She is in chemo for them now, and expects she will again get good results. This woman has been pronounced NED so many times, it's just amazing. Fortunately, she accepted the fact a long time ago that she isn't really NED - hasn't been in years. That keeps her from grieving and getting depressed with every new recurrence. Her quality of life is great, however. She is still working and recently told her neighbor (my good friend) that she doesn't remember what it was like to have hair, and no longer cares if hers ever gets to grow more than a few inches before it falls out again.
Keep the faith, GTB, and never, never, ever give up.
Carlene0 -
God Bless YouHissy_Fitz said:I know a woman whose
I know a woman whose experience has been almost identical to yours, except that she is now 11 years out from her initial diagnosis. Her newest tumors are in her back. She is in chemo for them now, and expects she will again get good results. This woman has been pronounced NED so many times, it's just amazing. Fortunately, she accepted the fact a long time ago that she isn't really NED - hasn't been in years. That keeps her from grieving and getting depressed with every new recurrence. Her quality of life is great, however. She is still working and recently told her neighbor (my good friend) that she doesn't remember what it was like to have hair, and no longer cares if hers ever gets to grow more than a few inches before it falls out again.
Keep the faith, GTB, and never, never, ever give up.
Carlene
God will help you through this, I know you are probably afriad, we are all here if you need to talk0 -
Hi,
Although it's been a
Hi,
Although it's been a while since I've posted; I check in from time to time and saw your post.
I too have had just as many treatments (4) in just as many years ( almost 4 in Feb., 2011).
My heart goes out to you, because you sound just like me having had so many treatments in such a short period of time. After my 4 treatment, I am currently in remission by 6 months. My longest remission was 1yr. Just remember, it's going to take possibly many attempts before that right dose is found for your body. For me it was a weekly dose of taxol for 12 weeks, so for now I'm good.
I'm stage iv ovca also and just remember don't focus too much (it can't be helped I know) on the fact that you have cancer, make sure your oncologist and you have a great relationship and understanding about treatment of your cancer. And last but not least, everyday we are above ground is the promise that day my hold a better treatment/cure for our illness.
Please read my page when you have time, just to know you are not alone.
Sharon0 -
afraid too
I think we are all a little afraid. we just finish with 6month of chemo and then start all over again. This is our way of life now but we are alive today because of these drugs. I know many cancer survivers who have had occurrances after 1 or 2 years off chemo. we must stay focused and enjoy each day and live in the moment. we are all here for you. I am not getting used to having hair I want my hair back someday. next chemo is thurday so i will not be on this site for a few days...God bless...stay strong....Val0 -
Welcome
I was diagnosed in May 2006, 3C and I can relate to your small tumors in different places. . Keep focused on your statement that "everytime the chemo treatments have brought you good results." Many of the woman here have saifd that this is a marathon not a sprint.
(((HUGS))) Maria0 -
Cleveland Clinic
Hi Grammy. Sorry you have to be here, but this is a great place for advice and support. Of course you are afraid, who wouldn't be. I agree the fact that you have had such good results with chemo is a good thing. I was just wondering, who at Cleveland Clinic did your surgery. Was it Dr. Rose?0 -
I'm very much the same as you
I was also dx in August of 2006 IIIc. I have had over 40 chemo tratments including 18 IP and 9 surgeries including splean removed and bowel surgery the last time. I am currently on Avastin and a daily oral Cytoxan like you are. This has been the easiest of all treatments for me. No side effects at all other than elevated blood pressure and I'm on meds for that. These things keep appearing and they have always been small but eventually needed to be removed. I have not had them on the bone. Now I have one lymph node in the center of my chest and one small tumor very low in the pelvis on the left side. They came back in the same exact spots where they removed them in my last surgery. Going for one more treatment and then the CT/PET scan at the end of December. I am able to work full time and trying like heck to make the most of it. My doctor says that I am truly in the category that they describe as "chronic and treatable (it's there but under control)". We sound very similar in how we are responding to the chemo treatments and that's possitive. It just keeps lingering around. We are seeing more and more women living longer with this disease but it doesn't stop the worrying and often panic. This really is a very difficult disease to understand and it's always hanging over our heads. Good Luck to you and I hope you can sail through the treatments. J.0 -
cleveland clinicCindy Bear said:Cleveland Clinic
Hi Grammy. Sorry you have to be here, but this is a great place for advice and support. Of course you are afraid, who wouldn't be. I agree the fact that you have had such good results with chemo is a good thing. I was just wondering, who at Cleveland Clinic did your surgery. Was it Dr. Rose?
Cindy,
First of all, thank you for caring and offering support. I didn't even know if anyone would answer. It's nice to have someone to talk to that isn't personally involved. My oncologist is Dr. Richard Drake- I think quite alot newer to CC than Dr. Rose. Do you go to the Cleveland Clinic also?? Thanks again.0 -
wowjloe said:I'm very much the same as you
I was also dx in August of 2006 IIIc. I have had over 40 chemo tratments including 18 IP and 9 surgeries including splean removed and bowel surgery the last time. I am currently on Avastin and a daily oral Cytoxan like you are. This has been the easiest of all treatments for me. No side effects at all other than elevated blood pressure and I'm on meds for that. These things keep appearing and they have always been small but eventually needed to be removed. I have not had them on the bone. Now I have one lymph node in the center of my chest and one small tumor very low in the pelvis on the left side. They came back in the same exact spots where they removed them in my last surgery. Going for one more treatment and then the CT/PET scan at the end of December. I am able to work full time and trying like heck to make the most of it. My doctor says that I am truly in the category that they describe as "chronic and treatable (it's there but under control)". We sound very similar in how we are responding to the chemo treatments and that's possitive. It just keeps lingering around. We are seeing more and more women living longer with this disease but it doesn't stop the worrying and often panic. This really is a very difficult disease to understand and it's always hanging over our heads. Good Luck to you and I hope you can sail through the treatments. J.
J
I can't believe how similar our cases are-right down to the date of diagnosis! I have done amazingly well on all treatments but none seem to keep it away. One difference is I only had the one surgery- everything else is chemo. I haven't personally gone over this last scan with onc yet- holidays etc. but in previous recurrences he said surgery was not option- tumors too close to vital organs/arteries. This time all except one in pelvis are new sites. The oncology nurse tells me they are all nodular-near the bones mentioned but not on or in. This actually made me feel alot better. I realize of course that I have chronic oc but sometimes you still panic when it comes back. What if this is the time the drugs don't work, etc. I'm sure you have felt the same way. I know I am blessed to have had such good results to chemo. Good luck to you also and God Bless. Bella's Grammy0 -
marathonMwee said:Welcome
I was diagnosed in May 2006, 3C and I can relate to your small tumors in different places. . Keep focused on your statement that "everytime the chemo treatments have brought you good results." Many of the woman here have saifd that this is a marathon not a sprint.
(((HUGS))) Maria
Maria, Thanks so much for your support. I know I am lucky to have such good response. I guess I needed to vent. Thanks and good luck with your marathon. Sally0 -
thankspoopergirl14052 said:afraid too
I think we are all a little afraid. we just finish with 6month of chemo and then start all over again. This is our way of life now but we are alive today because of these drugs. I know many cancer survivers who have had occurrances after 1 or 2 years off chemo. we must stay focused and enjoy each day and live in the moment. we are all here for you. I am not getting used to having hair I want my hair back someday. next chemo is thurday so i will not be on this site for a few days...God bless...stay strong....Val
Thanks for your positive feedback. It helps alot to know others understand exactly what you're going through, especially the anxiety which I really try not to unload on my amazing family. They worry enough. I hOpe your treatment went well. My next is on the 23rd. God Bless. Sally0 -
supportmsfanciful said:Hi,
Although it's been a
Hi,
Although it's been a while since I've posted; I check in from time to time and saw your post.
I too have had just as many treatments (4) in just as many years ( almost 4 in Feb., 2011).
My heart goes out to you, because you sound just like me having had so many treatments in such a short period of time. After my 4 treatment, I am currently in remission by 6 months. My longest remission was 1yr. Just remember, it's going to take possibly many attempts before that right dose is found for your body. For me it was a weekly dose of taxol for 12 weeks, so for now I'm good.
I'm stage iv ovca also and just remember don't focus too much (it can't be helped I know) on the fact that you have cancer, make sure your oncologist and you have a great relationship and understanding about treatment of your cancer. And last but not least, everyday we are above ground is the promise that day my hold a better treatment/cure for our illness.
Please read my page when you have time, just to know you are not alone.
Sharon
I am so thankful you responded.. We have alot in common. My next treatment is 12-23 and I have a really good attitude and am visualizing the best. God bless and good luck. Sally0 -
wonder whyjloe said:I'm very much the same as you
I was also dx in August of 2006 IIIc. I have had over 40 chemo tratments including 18 IP and 9 surgeries including splean removed and bowel surgery the last time. I am currently on Avastin and a daily oral Cytoxan like you are. This has been the easiest of all treatments for me. No side effects at all other than elevated blood pressure and I'm on meds for that. These things keep appearing and they have always been small but eventually needed to be removed. I have not had them on the bone. Now I have one lymph node in the center of my chest and one small tumor very low in the pelvis on the left side. They came back in the same exact spots where they removed them in my last surgery. Going for one more treatment and then the CT/PET scan at the end of December. I am able to work full time and trying like heck to make the most of it. My doctor says that I am truly in the category that they describe as "chronic and treatable (it's there but under control)". We sound very similar in how we are responding to the chemo treatments and that's possitive. It just keeps lingering around. We are seeing more and more women living longer with this disease but it doesn't stop the worrying and often panic. This really is a very difficult disease to understand and it's always hanging over our heads. Good Luck to you and I hope you can sail through the treatments. J.
I wonder why some women can repeatedly knock it down a bit and manage to get by for years. Other women fall quickly. It seems so random. It is all how your body resonds to the chemo.0 -
blessingsazgrandma said:God Bless You
God will help you through this, I know you are probably afriad, we are all here if you need to talk
Thank you for your blessings. I am buoyed by the respnses I've gotten and am renewed in the spirit to fight this with a positive frame of mind. Sally0 -
words of supportHissy_Fitz said:I know a woman whose
I know a woman whose experience has been almost identical to yours, except that she is now 11 years out from her initial diagnosis. Her newest tumors are in her back. She is in chemo for them now, and expects she will again get good results. This woman has been pronounced NED so many times, it's just amazing. Fortunately, she accepted the fact a long time ago that she isn't really NED - hasn't been in years. That keeps her from grieving and getting depressed with every new recurrence. Her quality of life is great, however. She is still working and recently told her neighbor (my good friend) that she doesn't remember what it was like to have hair, and no longer cares if hers ever gets to grow more than a few inches before it falls out again.
Keep the faith, GTB, and never, never, ever give up.
Carlene
Carlene,
Thanks, I think we ned to hear once in a while the long term survivors. The 5 year thing is pretty haunting. I was freaked out, but now have renewed my determination to fight this with only positive energy and gratituden for small and large victories. Thanks again for the uplift. Sally0 -
I have wondered the samenancy591 said:wonder why
I wonder why some women can repeatedly knock it down a bit and manage to get by for years. Other women fall quickly. It seems so random. It is all how your body resonds to the chemo.
I have wondered the same thing.0 -
Welcome!
I am on chemo/cancer break right now, but just can't stay away from you lovely ladies! I was dx June 07 and am on 4th line. I understand your fear. The good news for us is that chemo does work (your tumors must be grade 3?) but the bad news is that is does take it's toll on the body (and mind!). So, the trick is to keep the soul refreshed and alive, and pace yourself. That is my theory anyway.
Just wanted to say, "Welcome!". Keep us updated on your progress.
Hugs,
kathleen0 -
Hiya Bella's Grammygrammy to bella said:wow
J
I can't believe how similar our cases are-right down to the date of diagnosis! I have done amazingly well on all treatments but none seem to keep it away. One difference is I only had the one surgery- everything else is chemo. I haven't personally gone over this last scan with onc yet- holidays etc. but in previous recurrences he said surgery was not option- tumors too close to vital organs/arteries. This time all except one in pelvis are new sites. The oncology nurse tells me they are all nodular-near the bones mentioned but not on or in. This actually made me feel alot better. I realize of course that I have chronic oc but sometimes you still panic when it comes back. What if this is the time the drugs don't work, etc. I'm sure you have felt the same way. I know I am blessed to have had such good results to chemo. Good luck to you also and God Bless. Bella's Grammy
I really identified with your original post. I was dx last Nov 09 with PPC and completed 6 rounds of carbo/taxol. My CA 125 went from 1119 down to 34 and I was so pleased. I was just getting used to my hair growing back when my numbers shot up back to over 1,000 and I am now back on chemo. My hair was looking so shiny and lustrous and I know it will all fall out next week. However, I have come to terms with the fact that I have a chronic cancer that can't be cured but HOPEFULLY can be kept stable on chemo. I cannot have surgery because my cancer cells are "like sand" - too small and "it would be futile to try surgery (my oncologists words!)"
The one saving grace for you and I is the fact that the cells are ON THE OUTSIDE of major organs. I have them in the lining of my lung and every now and then I get fluid build up there which they can treat. I do think like you and wonder to myself WHAT DOES HAPPEN WHEN THE CHEMO STOPS WORKING?
I am fortunate at the moment because although I am on chemo I feel well 18 out of 21 days of the treatment. So this is how life will be for me now. Live for today and enjoy everything you do. I have 2 grown up children & a father and I spend time with them as much as I can.
Take care Tina xx0 -
your journeyTina Brown said:Hiya Bella's Grammy
I really identified with your original post. I was dx last Nov 09 with PPC and completed 6 rounds of carbo/taxol. My CA 125 went from 1119 down to 34 and I was so pleased. I was just getting used to my hair growing back when my numbers shot up back to over 1,000 and I am now back on chemo. My hair was looking so shiny and lustrous and I know it will all fall out next week. However, I have come to terms with the fact that I have a chronic cancer that can't be cured but HOPEFULLY can be kept stable on chemo. I cannot have surgery because my cancer cells are "like sand" - too small and "it would be futile to try surgery (my oncologists words!)"
The one saving grace for you and I is the fact that the cells are ON THE OUTSIDE of major organs. I have them in the lining of my lung and every now and then I get fluid build up there which they can treat. I do think like you and wonder to myself WHAT DOES HAPPEN WHEN THE CHEMO STOPS WORKING?
I am fortunate at the moment because although I am on chemo I feel well 18 out of 21 days of the treatment. So this is how life will be for me now. Live for today and enjoy everything you do. I have 2 grown up children & a father and I spend time with them as much as I can.
Take care Tina xx
Hi, Tina! My 5 rounds of chemo included 2 with hair loss, 1 with thinning, and 2 with none. So, you never know- you may end up with hair again, although I'm sure it's not your priority. I, too, feel well most of the time. I think it's the times your mind does the what ifs that are the hardest. I try very hard to keep those to a minimum, but reoccurrences are hard and take me a couple days to digest and get my game face back on. I have 2 grown children also, a hubby, a beautiful 4 year old grand baby and alot of family support. It helps to keep focused. You take care and we'll keep in touch. Sally0 -
welcomekayandok said:Welcome!
I am on chemo/cancer break right now, but just can't stay away from you lovely ladies! I was dx June 07 and am on 4th line. I understand your fear. The good news for us is that chemo does work (your tumors must be grade 3?) but the bad news is that is does take it's toll on the body (and mind!). So, the trick is to keep the soul refreshed and alive, and pace yourself. That is my theory anyway.
Just wanted to say, "Welcome!". Keep us updated on your progress.
Hugs,
kathleen
You're right, Kathleen. I am very lucky to be in the group where all chemos tried so far have worked and for the most part I feel fantastic. Each new round is a little scary but we need to remain strong and focused. Next treatment of avastin is Thursday and the daily oral cytoxan is going well. Have a blessed holiday season. Sally0
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