One more time/what happens when you stop AIs
Has anyone asked their onc this?
Ohilly
Comments
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Well you forced me to
Well you forced me to confess. I stopped taking Aromasin in October 2007. The onc took me off for 3 months to see if it was causing a problem. The problem continued so it wasn't the medication but I decided to not restart. It wasn't just the main side effect which was hot flashes all the time but it was very expensive and the onc told me it was only helping me 'slightly'. I decided it wasn't worth it. The way I understand it the medication helps some people greatly. I just am not one of these people.0 -
AI Past 5 Years
In women whose ovaries have been removed or are no longer functioning due to menopause, our only estrogen is produced when an enzyme called aromatase converts a hormone in our body into estrogen. AI's block aomatase from making this conversion. Once we stop taking our AI, the understanding is that aromatase goes right back to work. It's also possible that AIs might not work indefinitely but until this is proven, in a clinical trial, we just don't know.
The research on how long we should take our AIs is ongoing. What we know is that AIs trump Tamoxifen for post menopausal women. The clinical trial comparing the two was stopped so that the Tamoxifen group could be moved to Arimidex. Post menopausal women taking Tamoxifen for 2 or more years are often switched to one of the AIs because everything we know so far says they offer us more protection. Clinical trials are also studying whether 7-10 years of AIs offer more protection than just 5. A similar clinical trial of Tamoxifen years ago proved that 5 additional years was not beneficial.
Since there is, to date, no clinical proof that the AIs stop working after 5 years, I've chosen to continue taking Arimidex (with my oncologist's support) and wait for additional trial results. I started out with horrid joint pain for which I took Bextra until the FDA ordered it discontinued. I no longer have any pain (not sure when it finally went away). What I do have is insomnia (I'm retired so it's not a big thing for me)and thinning hair along the hairline, on top and at the temples (hate the thinning hair). I use a restorative product called K-Pak by Joico, take 750 mg of Biotin daily, have highlighted my hair to camouflage and have had it cut and styled a little spikey on top to look like there's more that there really is. I'm one of the lucky ones who never had hot flashes so the benefits of Arimidex, for me, currently outweigh the side effects.
Right now I believe staying on AIs past 5 years is on a case by case basis following a discussion with your oncologist to determine individual benefit. At least that's what it was for me. Hope this information helps.
terri0 -
5 years and then off?
Dear Ohilly,
I asked my oncologist about the length of time I would be on aromasin and what happens after that. The answer was and is complicated. The short answer is that the research isn't in yet and they don't quite know when to quit and what should come after that. The 5 year course came from tamoxifen which is a very different drug. Tamoxifen worked by blocking the estrogen receptors with a weak estrogen-like substance. If the cancer cells were fueled by full-strenth estrogen, the weaker estrogen-like substance was like feeding a car watered-down gas. In a short amount of time the cells quit growing and "starved" to death for lack of fuel.Unfortunately, most of us have a variety of messed up cells in any given tumor. If a few of the cells did not require estrogen as fuel, they would survive to multiply and take over. In addition, a few of the cells in the tumor might have the ability to survive and multiply on the weaker fuel provided by the tamoxifen. Again, if those cells were in there, after about 5 years those few cells might have multiplied to where they were about to become a problem. If the cells were dependent on tamoxifen for fueling their growth, stopping the tamoxifen would stop them from growing. Thus, based on this theory, patients would be put on tamoxifen for 5 years and then taken off of it so that first the primary tumor would be halted and then any cells dependent on the tamoxifen would be halted. That's my version of what I understand of the theory behind the 5 year limit on taking tamoxifen. More theories of how folks metabalize Tamoxifen have come up since and I'm not sure how that affects the premenapausal folks that are now taking the drug.
The aromatase inhibitors are very different drugs. They lower our estrogen output to near zero. There doesn't seem to be any other fuel that they produce that would feed ER + cells. Mind you, my oncologist warned me that even though this drug works to greatly reduce ER + cancers, if I have a reoccurance it will probably be a harder to treat ER - one. He didn't have to explain that to me. If there are any ER - cells sitting around in my body, the lack of estrogen wouldn't be a hindrance to their survival and they could possibly multiply until after a while they become the big problem. Natural selection at the cellular level apparently explains the process doctors observe. But at least as of last summer my oncologist( a guy with one heck of a great reputation and an international reputation at that) couldn't tell me whether I would need to go off the aromatase inhibitors after 5 years or if I would be staying on them or if I would be advised to go onto another drug. The research, he said, was still being done. Keeping my estrogen level down for life might stop the cancer growth for life. Or maybe not. New drugs may be invented that might work even better or with less side effects. Or maybe I will be advised to go back on tamoxifen to start another 8 year cycle (I was on the 3 years of Tamoxifen, 5 years of exemestane regime) all over again in hopes that rotating will trick all those nasty little cells to kick the bucket.
As for side effects, my doctor felt that if the drug was causing them being off of it for about three weeks should cause the side effects to go away. I tried a short holiday for about a month when I couldn't shake an ongoing respiratory infection. I didn't get better. Turned out I had a lung cancer problem. The joint pain went away after getting the vitamin D problem straightened out. Being off the aromatase inhibitor didn't help at all. So if you are having side effects you can talk to your doctor about taking a drug holiday and see if that will help. If it doesn't, you may need to find out what else is going on. Good luck!
C. Abbott0 -
thinning hairtlmac said:AI Past 5 Years
In women whose ovaries have been removed or are no longer functioning due to menopause, our only estrogen is produced when an enzyme called aromatase converts a hormone in our body into estrogen. AI's block aomatase from making this conversion. Once we stop taking our AI, the understanding is that aromatase goes right back to work. It's also possible that AIs might not work indefinitely but until this is proven, in a clinical trial, we just don't know.
The research on how long we should take our AIs is ongoing. What we know is that AIs trump Tamoxifen for post menopausal women. The clinical trial comparing the two was stopped so that the Tamoxifen group could be moved to Arimidex. Post menopausal women taking Tamoxifen for 2 or more years are often switched to one of the AIs because everything we know so far says they offer us more protection. Clinical trials are also studying whether 7-10 years of AIs offer more protection than just 5. A similar clinical trial of Tamoxifen years ago proved that 5 additional years was not beneficial.
Since there is, to date, no clinical proof that the AIs stop working after 5 years, I've chosen to continue taking Arimidex (with my oncologist's support) and wait for additional trial results. I started out with horrid joint pain for which I took Bextra until the FDA ordered it discontinued. I no longer have any pain (not sure when it finally went away). What I do have is insomnia (I'm retired so it's not a big thing for me)and thinning hair along the hairline, on top and at the temples (hate the thinning hair). I use a restorative product called K-Pak by Joico, take 750 mg of Biotin daily, have highlighted my hair to camouflage and have had it cut and styled a little spikey on top to look like there's more that there really is. I'm one of the lucky ones who never had hot flashes so the benefits of Arimidex, for me, currently outweigh the side effects.
Right now I believe staying on AIs past 5 years is on a case by case basis following a discussion with your oncologist to determine individual benefit. At least that's what it was for me. Hope this information helps.
terri
I got more information from you than I did my doctor, so thanks. I don't know if you have followed all my posts about my thinning hair from Femara, but I can see I'm not the only one who has this effect. I wonder if the hair will grow back once we stop taking the drug? Can you tell me where you get K-Pak by Joico, and what is it? (I am already using Biotin, does it help?).
Ohilly0 -
Thank you C.cabbott said:5 years and then off?
Dear Ohilly,
I asked my oncologist about the length of time I would be on aromasin and what happens after that. The answer was and is complicated. The short answer is that the research isn't in yet and they don't quite know when to quit and what should come after that. The 5 year course came from tamoxifen which is a very different drug. Tamoxifen worked by blocking the estrogen receptors with a weak estrogen-like substance. If the cancer cells were fueled by full-strenth estrogen, the weaker estrogen-like substance was like feeding a car watered-down gas. In a short amount of time the cells quit growing and "starved" to death for lack of fuel.Unfortunately, most of us have a variety of messed up cells in any given tumor. If a few of the cells did not require estrogen as fuel, they would survive to multiply and take over. In addition, a few of the cells in the tumor might have the ability to survive and multiply on the weaker fuel provided by the tamoxifen. Again, if those cells were in there, after about 5 years those few cells might have multiplied to where they were about to become a problem. If the cells were dependent on tamoxifen for fueling their growth, stopping the tamoxifen would stop them from growing. Thus, based on this theory, patients would be put on tamoxifen for 5 years and then taken off of it so that first the primary tumor would be halted and then any cells dependent on the tamoxifen would be halted. That's my version of what I understand of the theory behind the 5 year limit on taking tamoxifen. More theories of how folks metabalize Tamoxifen have come up since and I'm not sure how that affects the premenapausal folks that are now taking the drug.
The aromatase inhibitors are very different drugs. They lower our estrogen output to near zero. There doesn't seem to be any other fuel that they produce that would feed ER + cells. Mind you, my oncologist warned me that even though this drug works to greatly reduce ER + cancers, if I have a reoccurance it will probably be a harder to treat ER - one. He didn't have to explain that to me. If there are any ER - cells sitting around in my body, the lack of estrogen wouldn't be a hindrance to their survival and they could possibly multiply until after a while they become the big problem. Natural selection at the cellular level apparently explains the process doctors observe. But at least as of last summer my oncologist( a guy with one heck of a great reputation and an international reputation at that) couldn't tell me whether I would need to go off the aromatase inhibitors after 5 years or if I would be staying on them or if I would be advised to go onto another drug. The research, he said, was still being done. Keeping my estrogen level down for life might stop the cancer growth for life. Or maybe not. New drugs may be invented that might work even better or with less side effects. Or maybe I will be advised to go back on tamoxifen to start another 8 year cycle (I was on the 3 years of Tamoxifen, 5 years of exemestane regime) all over again in hopes that rotating will trick all those nasty little cells to kick the bucket.
As for side effects, my doctor felt that if the drug was causing them being off of it for about three weeks should cause the side effects to go away. I tried a short holiday for about a month when I couldn't shake an ongoing respiratory infection. I didn't get better. Turned out I had a lung cancer problem. The joint pain went away after getting the vitamin D problem straightened out. Being off the aromatase inhibitor didn't help at all. So if you are having side effects you can talk to your doctor about taking a drug holiday and see if that will help. If it doesn't, you may need to find out what else is going on. Good luck!
C. Abbott
I found your post to be very informative, and answered alot of questions i had been wondering about. You explained it in a way even i could understand.
my best to you
Jackie0 -
K-Pak & Biotin
Wish I could say I'm certain Biotin works but I'm not. I take it because my hairdresser highly recommended it and I'm willing to swallow one more supplement if it helps even a little. It's been about 6 months now and I do believe I see less hair swirling the drain when I shampoo. Perhaps that's just wishful thinking! The K-Pak, also recommended by my hairdresser, is unavailable to me locally (small town in the Ohio Valley) and pretty pricey online so I get it through my hairdresser. She buys it with her discount at a beauty supply company and sells to me at cost. I've also stopped shampooing daily after being told it strips the hair I have left of nutrients and weakens it. I shampoo no more than twice a week but do rinse and add conditioner in between shampooing (hate that greasy head look).
You asked if hair comes back once we all finish taking our Arimidex or Femara and there's just no way to tell. I have elderly women friends who have extremely thin hair, I assume due to a lack of estrogen as they age, and none of them has ever taken Arimidex or Femara. I worry that I might stop taking a drug that could extend my life for reasons of vanity only to find the thinning would have happened to me naturally as it has to a handful of my dear friends.
I stopped comparing my life before cancer with my life after cancer because it just depressed me horribly. Instead, I concentrate on how lucky I am to be alive and how much I still have to live for and it's helped me come to terms with no breasts, thin hair, insomnia, weight gain and that fear of a recurrence. I wish I could be more reassuring, Ohilly, because I can tell from your posts how deeply this has affected you. Does it help at all to know you aren't alone?
terri0 -
thanks for replyingtlmac said:K-Pak & Biotin
Wish I could say I'm certain Biotin works but I'm not. I take it because my hairdresser highly recommended it and I'm willing to swallow one more supplement if it helps even a little. It's been about 6 months now and I do believe I see less hair swirling the drain when I shampoo. Perhaps that's just wishful thinking! The K-Pak, also recommended by my hairdresser, is unavailable to me locally (small town in the Ohio Valley) and pretty pricey online so I get it through my hairdresser. She buys it with her discount at a beauty supply company and sells to me at cost. I've also stopped shampooing daily after being told it strips the hair I have left of nutrients and weakens it. I shampoo no more than twice a week but do rinse and add conditioner in between shampooing (hate that greasy head look).
You asked if hair comes back once we all finish taking our Arimidex or Femara and there's just no way to tell. I have elderly women friends who have extremely thin hair, I assume due to a lack of estrogen as they age, and none of them has ever taken Arimidex or Femara. I worry that I might stop taking a drug that could extend my life for reasons of vanity only to find the thinning would have happened to me naturally as it has to a handful of my dear friends.
I stopped comparing my life before cancer with my life after cancer because it just depressed me horribly. Instead, I concentrate on how lucky I am to be alive and how much I still have to live for and it's helped me come to terms with no breasts, thin hair, insomnia, weight gain and that fear of a recurrence. I wish I could be more reassuring, Ohilly, because I can tell from your posts how deeply this has affected you. Does it help at all to know you aren't alone?
terri
Yes, tlmac, it really does help to know I'm not the only one. I have a pretty similiar 'hair regime' to yours: I only shampoo a couple of times a week, take Biotin, etc.
Having my hair not come back the way it was was really hard for me, but I think I am coming to accept it. Someone on this board said that you have to accept your life the way it is now, not look back (always pining for the way you were pre-cancer) or ahead (worrying about recurrence). That is so true. I was the most distraught when I still thought my hair would come back the way it was, but now that I know that that will not happen, I'm in a better place. I also did what you did with the different hair cut and trying to camouflage it, which is making me feel better.
Thanks for reaching out,
Ohilly0 -
Thanks, C. Abbott, youcabbott said:5 years and then off?
Dear Ohilly,
I asked my oncologist about the length of time I would be on aromasin and what happens after that. The answer was and is complicated. The short answer is that the research isn't in yet and they don't quite know when to quit and what should come after that. The 5 year course came from tamoxifen which is a very different drug. Tamoxifen worked by blocking the estrogen receptors with a weak estrogen-like substance. If the cancer cells were fueled by full-strenth estrogen, the weaker estrogen-like substance was like feeding a car watered-down gas. In a short amount of time the cells quit growing and "starved" to death for lack of fuel.Unfortunately, most of us have a variety of messed up cells in any given tumor. If a few of the cells did not require estrogen as fuel, they would survive to multiply and take over. In addition, a few of the cells in the tumor might have the ability to survive and multiply on the weaker fuel provided by the tamoxifen. Again, if those cells were in there, after about 5 years those few cells might have multiplied to where they were about to become a problem. If the cells were dependent on tamoxifen for fueling their growth, stopping the tamoxifen would stop them from growing. Thus, based on this theory, patients would be put on tamoxifen for 5 years and then taken off of it so that first the primary tumor would be halted and then any cells dependent on the tamoxifen would be halted. That's my version of what I understand of the theory behind the 5 year limit on taking tamoxifen. More theories of how folks metabalize Tamoxifen have come up since and I'm not sure how that affects the premenapausal folks that are now taking the drug.
The aromatase inhibitors are very different drugs. They lower our estrogen output to near zero. There doesn't seem to be any other fuel that they produce that would feed ER + cells. Mind you, my oncologist warned me that even though this drug works to greatly reduce ER + cancers, if I have a reoccurance it will probably be a harder to treat ER - one. He didn't have to explain that to me. If there are any ER - cells sitting around in my body, the lack of estrogen wouldn't be a hindrance to their survival and they could possibly multiply until after a while they become the big problem. Natural selection at the cellular level apparently explains the process doctors observe. But at least as of last summer my oncologist( a guy with one heck of a great reputation and an international reputation at that) couldn't tell me whether I would need to go off the aromatase inhibitors after 5 years or if I would be staying on them or if I would be advised to go onto another drug. The research, he said, was still being done. Keeping my estrogen level down for life might stop the cancer growth for life. Or maybe not. New drugs may be invented that might work even better or with less side effects. Or maybe I will be advised to go back on tamoxifen to start another 8 year cycle (I was on the 3 years of Tamoxifen, 5 years of exemestane regime) all over again in hopes that rotating will trick all those nasty little cells to kick the bucket.
As for side effects, my doctor felt that if the drug was causing them being off of it for about three weeks should cause the side effects to go away. I tried a short holiday for about a month when I couldn't shake an ongoing respiratory infection. I didn't get better. Turned out I had a lung cancer problem. The joint pain went away after getting the vitamin D problem straightened out. Being off the aromatase inhibitor didn't help at all. So if you are having side effects you can talk to your doctor about taking a drug holiday and see if that will help. If it doesn't, you may need to find out what else is going on. Good luck!
C. Abbott
Thanks, C. Abbott, you always explain things so thoroughly. I have stopped taking the Tamxoifen as of yesterday for a brief spell to see if the horrible joint pain and the charlie horses on my calves will go away. I woke up Thursday with so much pain that I couldn't walk and my fingers on my hands felt numb. They were so stiff and swollen that I couldn't bend them. And all this started 3 months after I started taking the Tamoxifen, it just got much worse as time progressed. I am now taking a short break to see if my symptoms go away. My vit d level is high, I take glucosamine, and calcium so now it's a matter of wait and see. I am not sure if he will change me to Arimidex once I'm done with this mini break but I'm hoping all these symptoms go away. Hugs, Lili0 -
Stopping AI'sMarcia527 said:Well you forced me to
Well you forced me to confess. I stopped taking Aromasin in October 2007. The onc took me off for 3 months to see if it was causing a problem. The problem continued so it wasn't the medication but I decided to not restart. It wasn't just the main side effect which was hot flashes all the time but it was very expensive and the onc told me it was only helping me 'slightly'. I decided it wasn't worth it. The way I understand it the medication helps some people greatly. I just am not one of these people.
Hi Marcia,
I was diagnosed with invasive ductal carcinoma in 2005. I had a lumpectomy and 2 nodes removed, no node involvement. Tried Aromasin and Arimidex for 8 mos. No chemo or Tamoxafin.
My onc only told me to stop each one for 2 weeks. The side effects just kept getting worse.
Eight months later, I stopped the AI's altogether. Most of the side effects stopped except for the burning in my legs. His explanation for numbness and burning was it couldn't be caused from the meds.
Since you stopped in 2007, I wonder how you have been feeling since and what measures you have taken, if any, to help your survival.
I am anxious to know of anyone else who has stopped their meds and the outcome.
I do hope you are doing well and my thoughts and prayers are with you and all who share this terrible disease.0 -
pain from AromasinSandrina11 said:Stopping AI's
Hi Marcia,
I was diagnosed with invasive ductal carcinoma in 2005. I had a lumpectomy and 2 nodes removed, no node involvement. Tried Aromasin and Arimidex for 8 mos. No chemo or Tamoxafin.
My onc only told me to stop each one for 2 weeks. The side effects just kept getting worse.
Eight months later, I stopped the AI's altogether. Most of the side effects stopped except for the burning in my legs. His explanation for numbness and burning was it couldn't be caused from the meds.
Since you stopped in 2007, I wonder how you have been feeling since and what measures you have taken, if any, to help your survival.
I am anxious to know of anyone else who has stopped their meds and the outcome.
I do hope you are doing well and my thoughts and prayers are with you and all who share this terrible disease.
I took Tamoxifen for 5 years with minor side effects(hot flashes and vaginal discharge).I had no wt. gain at all. I took Femara for 8 mos and then switched to Aromasin for 1 1/2 years but stopped because of joint pain, wt gain, high cholesterol, dry eyes,low thyroid, trigger fingers, heel pain, etc. I've been off meds since Oct 2007. I still have high chol, low thyroid(both of which I take meds for), Hand, knee and heel pain , . I didn't have any of these symtoms prior to the meds. I am 57 so I guess it could be aging but I'm more convinced that the Aromasin and Femara started them. Hope this helps you see that you are not alone.Good Luck! HUGS!! Cathy0 -
Just meSandrina11 said:Stopping AI's
Hi Marcia,
I was diagnosed with invasive ductal carcinoma in 2005. I had a lumpectomy and 2 nodes removed, no node involvement. Tried Aromasin and Arimidex for 8 mos. No chemo or Tamoxafin.
My onc only told me to stop each one for 2 weeks. The side effects just kept getting worse.
Eight months later, I stopped the AI's altogether. Most of the side effects stopped except for the burning in my legs. His explanation for numbness and burning was it couldn't be caused from the meds.
Since you stopped in 2007, I wonder how you have been feeling since and what measures you have taken, if any, to help your survival.
I am anxious to know of anyone else who has stopped their meds and the outcome.
I do hope you are doing well and my thoughts and prayers are with you and all who share this terrible disease.
I have other health problems. I don't know what is causing some of my problems. I've seen a PCP and a dermatologist and neither could find a cause. I also was diagnosed in 2006 with Parkinson's. This has caused trouble with walking and small finger movement.
I was diagnosed in 2003 and had four cycles of chemo, a mastectomy, four more cycles of chemo, 6 weeks of radiation and was on Tamoxefin for 9 months and Aromasin for 2 1/2 years. The surgeon removed 15 lymph nodes and two still had cancer in them after the initial four cycles.
I don't know what the outcome will be. I guess time will tell.0 -
Marcia
I am so sorry to hear of your other health issues.You have certainly been through so much.
But, you have prevailed and are a strong person with a lot of will to keep going.
You didn't mention if you have gone back to taking any meds. Have you?
Some suspicious microcalcifications have been spotted recently on a digital mammo of mine. Since that was my first digital one, my surgeon onc doesn't know if they were there or not on a regular mammo.
So, like the rest of us in this unholy sisterhood, you just wait and see what will develop.
I forgot to mention that I had 8 weeks of radiation.
I do a lot of research on the internet about breast cancer and came to my own conclusions about whether or not I will accept from doctors, the way I wish to be treated with meds, etc.
Of course, my choice is an individual one and I don't know the consequences of making the choice that I did. I only know that I did not have any quality of life on the AI's.
This choice of mine, is certainly not right for most people.
I do take a lot of supplements, at this point in time, that may or may not help. Most doctors don't know much about them so I do my own thing.
So, please take care and keep in touch, if you wish0 -
No I am not takingSandrina11 said:Marcia
I am so sorry to hear of your other health issues.You have certainly been through so much.
But, you have prevailed and are a strong person with a lot of will to keep going.
You didn't mention if you have gone back to taking any meds. Have you?
Some suspicious microcalcifications have been spotted recently on a digital mammo of mine. Since that was my first digital one, my surgeon onc doesn't know if they were there or not on a regular mammo.
So, like the rest of us in this unholy sisterhood, you just wait and see what will develop.
I forgot to mention that I had 8 weeks of radiation.
I do a lot of research on the internet about breast cancer and came to my own conclusions about whether or not I will accept from doctors, the way I wish to be treated with meds, etc.
Of course, my choice is an individual one and I don't know the consequences of making the choice that I did. I only know that I did not have any quality of life on the AI's.
This choice of mine, is certainly not right for most people.
I do take a lot of supplements, at this point in time, that may or may not help. Most doctors don't know much about them so I do my own thing.
So, please take care and keep in touch, if you wish
No I am not taking medication. I do take a daily multi-vitamin.
At least they spotted it early even if a regular mammo didn't see it.
Yeah, who knows how everything will turn out. I had an aunt and uncle where the aunt was sickly since before I was born. He was healthy. He died in his fifties and she lived to the nineties! I guess you just got to live while you are here. If we do make it to the rocking chair at least we will have a lot of good memories. At least if we don't get dementia-ekks don't want to go there!0 -
An interesting link for
An interesting link for those who have discontinued their meds and are estrogen positive. This trial is over in June 2010. I'm really interested in seeing the outcome.
(Thanks to Joe for showing me how to create a link)0 -
Link to a Clinical Trial
Hi Phoenixrising,
I am really interested in the link you suggested. However, it doesn't come up on what is highlighted in blue. Could you please just write it out?
I really would appreciate it.
I am so happy that I found this website today.
I do hope that even if I address one or two people that anyone who feels like putting their 2 cents into whomever I write to, will do so.
My main objective is to keep my immune system high, if possible. We all have cancer cells in us but, in a lot of us, the cells go awry for some reason or another.
I do take a number of antioxidents. I believe in mind over body.
I did see that Boron that is in some vitamin pills enhances estrogen so I take a vitamin that doesn't contain that. I also stay away from soy as there are different opinions about taking it if you have cancer.
Please be well.0 -
I don't see a "link" in your post?phoenixrising said:An interesting link for
An interesting link for those who have discontinued their meds and are estrogen positive. This trial is over in June 2010. I'm really interested in seeing the outcome.
(Thanks to Joe for showing me how to create a link)
And would be most interested in this topic.
Please try again, or just type it in. MANY THANKS!
Kind regards, Susan0 -
Welcome, Sandrina11Sandrina11 said:Link to a Clinical Trial
Hi Phoenixrising,
I am really interested in the link you suggested. However, it doesn't come up on what is highlighted in blue. Could you please just write it out?
I really would appreciate it.
I am so happy that I found this website today.
I do hope that even if I address one or two people that anyone who feels like putting their 2 cents into whomever I write to, will do so.
My main objective is to keep my immune system high, if possible. We all have cancer cells in us but, in a lot of us, the cells go awry for some reason or another.
I do take a number of antioxidents. I believe in mind over body.
I did see that Boron that is in some vitamin pills enhances estrogen so I take a vitamin that doesn't contain that. I also stay away from soy as there are different opinions about taking it if you have cancer.
Please be well.
And we are glad you found us! Warm welcome to you!
Kind regards, Susan0 -
Sorry about that...It works when I click on it...try thisSandrina11 said:Link to a Clinical Trial
Hi Phoenixrising,
I am really interested in the link you suggested. However, it doesn't come up on what is highlighted in blue. Could you please just write it out?
I really would appreciate it.
I am so happy that I found this website today.
I do hope that even if I address one or two people that anyone who feels like putting their 2 cents into whomever I write to, will do so.
My main objective is to keep my immune system high, if possible. We all have cancer cells in us but, in a lot of us, the cells go awry for some reason or another.
I do take a number of antioxidents. I believe in mind over body.
I did see that Boron that is in some vitamin pills enhances estrogen so I take a vitamin that doesn't contain that. I also stay away from soy as there are different opinions about taking it if you have cancer.
Please be well.
Flax vs Aromatase Inhibitors0 -
Hello, terri!tlmac said:AI Past 5 Years
In women whose ovaries have been removed or are no longer functioning due to menopause, our only estrogen is produced when an enzyme called aromatase converts a hormone in our body into estrogen. AI's block aomatase from making this conversion. Once we stop taking our AI, the understanding is that aromatase goes right back to work. It's also possible that AIs might not work indefinitely but until this is proven, in a clinical trial, we just don't know.
The research on how long we should take our AIs is ongoing. What we know is that AIs trump Tamoxifen for post menopausal women. The clinical trial comparing the two was stopped so that the Tamoxifen group could be moved to Arimidex. Post menopausal women taking Tamoxifen for 2 or more years are often switched to one of the AIs because everything we know so far says they offer us more protection. Clinical trials are also studying whether 7-10 years of AIs offer more protection than just 5. A similar clinical trial of Tamoxifen years ago proved that 5 additional years was not beneficial.
Since there is, to date, no clinical proof that the AIs stop working after 5 years, I've chosen to continue taking Arimidex (with my oncologist's support) and wait for additional trial results. I started out with horrid joint pain for which I took Bextra until the FDA ordered it discontinued. I no longer have any pain (not sure when it finally went away). What I do have is insomnia (I'm retired so it's not a big thing for me)and thinning hair along the hairline, on top and at the temples (hate the thinning hair). I use a restorative product called K-Pak by Joico, take 750 mg of Biotin daily, have highlighted my hair to camouflage and have had it cut and styled a little spikey on top to look like there's more that there really is. I'm one of the lucky ones who never had hot flashes so the benefits of Arimidex, for me, currently outweigh the side effects.
Right now I believe staying on AIs past 5 years is on a case by case basis following a discussion with your oncologist to determine individual benefit. At least that's what it was for me. Hope this information helps.
terri
I joined this amazing group just last month. I believe this is the first post I've seen from you; therefore, it's very nice to "meet' you!
And, I'm writing to say thank you - so very much - for the information you've provided here. I just went through all of this with my onc in March. Marked that 5 year anniversary for completion of all invasive treatment (surgery/chemotherapy/radiation) by becoming a member here. Was diagnosed at 45, way before menopause. Chemo included chemically-induced menopause. Following rads, 2 years of Tamoxifen. Then, 3+ years & now still counting with Arimidex.
My onc is actually involved with the current clinical trial you reference. Therefore, participation was offered to me. I declined, because I didn't want to possibly get the placebo - thereby, experiencing not even the possibility of benefit. He agreed with my choice. My onc is at the forefront of the breast cancer crusade. I am, and have always been, very grateful to be within his care.
On behalf of others here who may be in the same situation without a good understanding as to exactly why, and also on behalf of those who may soon be offered this specific choice of continuing treatment - thank you, again. You did a beautiful job of translating medical jargon into layman's language!
Kind regards, Susan0 -
Hi, again, terri!tlmac said:K-Pak & Biotin
Wish I could say I'm certain Biotin works but I'm not. I take it because my hairdresser highly recommended it and I'm willing to swallow one more supplement if it helps even a little. It's been about 6 months now and I do believe I see less hair swirling the drain when I shampoo. Perhaps that's just wishful thinking! The K-Pak, also recommended by my hairdresser, is unavailable to me locally (small town in the Ohio Valley) and pretty pricey online so I get it through my hairdresser. She buys it with her discount at a beauty supply company and sells to me at cost. I've also stopped shampooing daily after being told it strips the hair I have left of nutrients and weakens it. I shampoo no more than twice a week but do rinse and add conditioner in between shampooing (hate that greasy head look).
You asked if hair comes back once we all finish taking our Arimidex or Femara and there's just no way to tell. I have elderly women friends who have extremely thin hair, I assume due to a lack of estrogen as they age, and none of them has ever taken Arimidex or Femara. I worry that I might stop taking a drug that could extend my life for reasons of vanity only to find the thinning would have happened to me naturally as it has to a handful of my dear friends.
I stopped comparing my life before cancer with my life after cancer because it just depressed me horribly. Instead, I concentrate on how lucky I am to be alive and how much I still have to live for and it's helped me come to terms with no breasts, thin hair, insomnia, weight gain and that fear of a recurrence. I wish I could be more reassuring, Ohilly, because I can tell from your posts how deeply this has affected you. Does it help at all to know you aren't alone?
terri
The hair thing... My mother - no cancer, no chemo, no drugs - began to complain loudly many years ago about thinning hair when she entered natural menopause... :-)
It took me a very, very long time to finally accept & resolve the personal issues of pre- & post- cancer life. I now know I spent way, way too much energy & time hoping to get my "old" life back. You are so correct in that a big part of acceptance of the "new" is to cease comparison between the two. Because this can be ultimately self destructive. Yes, even with permanent limitations - I am grateful to be alive. And, I'm finally at peace with my revised self & lifestyle.
I like to use this "books" analogy, which helped to turn my frustration & disappointment into grace & dignity:
From birth to diagnosis is "Book I" of my life. It's been written & published (years ago), now out of circulation. No chance to revise/edit the story. It is what it is, as it always will be. However, the story of my life certainly doesn't end with "Book I"...
"Book II" is from diagnosis to present - not yet finished, since my story continues. Many, many chapters - hopefully! - remain to be written.
I sincerely hope your post, and mine, may help others here who are struggling to find their own ways into their own "new" normals.
Thanks for sharing, terri.
Kind regards, Susan0
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