How Many are doing 10 years on Aromatase Inhibitors
Comments
-
My score was 9.1. 😕0
-
My BCI was 7.3 and have a high likelihood of benefit of continuing hormonal therapy. Switching from AI back to tamoxifen for who knows how long...the switch is because I have osteoporosis,although Ive taken Reclast for two years andmy dexa scan showed improvement. Not looking forward to more side effects of tamoxifen, when I was always getting cysts and bleeding. But now I don't have ovaries, so hopefully won't have many issues.
0 -
Momofone, I would think you would have less problems with Tamoxifen this time. I can't take it again since I had a blood clot. Hopefully my bones will hold up. Good luck!0
-
Hello all, I have decided to stop aromatase inhibiters after 7 years. I was on letrozole for 6 and 1/2 years and the se's got so bad my onco put me on a month break and switched me to anastrozole last November. I've just progressively gotten worse. Then I read through all of the ASCO guidelines for extended therapy and they included 2 studies that said 7 years is as good 10. The Austrian oncologist that did one of the 7 year studies said in an interview that he included high risk women in his study. The percent of benefit was not statistically significant after the 7 year mark. I stopped about 7 weeks ago and have just begun to feel a little better. Most notably depression beginning to lift and more stamina. My knees, hands, and back not improving much so far. If anyone would like the link to the ASCO guidelines and Dr. Gnants interview please pm me.
0 -
GrandmaV, thank you for sharing this information. I read the article and feel a bit relieved and will do 7 years instead of 10. I do not believe that I have enough remaining tumor tissue to do the BCI test.
0 -
Thanks for posting this. I am almost 9 years on AI's. On letrozole for most of it. I really want off of it so bad. My joints are killing me and was diagnosed with osteoporosis a few years ago. Dealing with depression too. I am a 9 year survivor. Thinking of doing a self directed vacay from the letrozole for a few weeks to see if things get better.
0 -
Katcar, I'm glad you found the article informative. As Dr. Gnant said in the interview, he included high risk women in his study and still didn't see any significant difference. If you look at the bottom of the chart, all the studies used either the BCI index test or other genomic tests to determine risk/benefit. Still no difference in outcomes between 2 and 5 years extended therapy beyond the first 5 years in those two studies.
Joan, I feel your pain literally. Keep in mind it will take time for the side effects to get better. The inflammation in the sheath of the tendons caused by these drugs has been there a long time. I'm hoping it will alleviate eventually but I've been off 8 weeks and not much if any better in joints of hands, hips, and knees. And my back is not much better. I'm increasing some of my anti-inflammatory supplements to try to see if this gives some relief. As I said my depression has been improving and my stamina. I'm able to last longer doing physical tasks and exercise.
0 -
katcar0001 They hold your original tumor at the lab. it does not take much for them to do the test. since you did not have cheno it would be wise to get the test to be sure
0 -
Saw my oncologist this afternoon. Originally she'd said that the most current research showed that since I'd had chemo I should stay on the arimidex for another 5 years, and only ordered the Breast Cancer Index test when I insisted. It came back showing that the arimidex would have little effect on preventing a reoccurence for me in the next 5 years. Today she told me that because of those test results I can stop taking my arimidex the end of October, the end of my 5 years. I'm so glad I insisted on the test.
0 -
Puffin did she tell you your BCI score? this tells your risk for recurrence. this is a two part test. mine show no benefit from arimidex after 5 years but my risk was high my score on 1 to 10 was 7.8
0 -
I know that i'm not the only one suffering, but I can hardly take it anymore. I try to power walk 3-3.4 miles a day x 4-5 days per week. It puts me in a better state of mind, but I sure pay for it. I don't sleep well at all to start with, but my leg (deep muscle pain with knee pain) is almost unbearable. I worked EVERY day of my chemo and radiation tx.(2015) missed only the day of the tumor removal, that's it...........so i'm kind of a tough broad. this however is killing me. mentally and physically. next april is my 5 year and am seriously considering discontinuing the femara. I will have the bci done to help decide. my biggest questions is this......i'd love to hear from those of you that did stop and was there any appreciable decrease in the god forsaken side effects??? this would help greatly in my decision making process. thanks to all for your input.
0 -
I did HT for four years. I switched around a lot to find one that was easiest. Tamoxifen was it. Still it played tricks on my uterus and I had two more separate gyn surgeries, finally at five year out I decided I’d made enough sacrifices and I stopped. Everything improved, but six day a week exercise really improved my joint issues. I still have hot flashes. No fun but I live with it.
0 -
My oncologist told me about the study that they were finding 7 years (plus or minus--I can't remember) just as good as 10 years so I stopped. It made such a difference, particularly with the depression which was bad, but I only realized how bad when I stopped.
0 -
herb: my BSI score was 5.2
0 -
Have any had the CTC (circulating tumor cell) blood test performed before deciding whether to stay on or go off AIs at 5 yrs? Seems to be a good predictor of late recurrence.
0 -
I was originally told I'd be on letrozole or another AI for 10 years. I'm almost to the 5 year mark and feeling really dragged down by the thought of another 5 years. Not so much due to joint issues, which I've pretty much learned to manage but more to simply not feeling like myself; I feel as though it's been incredibly aging and wearing. This is despite the fact that I'm an avid exerciser, have always eaten healthfully, etc.
My MO isn't big on the BCI (no one around here seems to be) but I plan to insist on something to help determine the possible benefit of continuing beyond 5 years. In my own mind I've decided that I'll take at least a 3-month break at the 5 year mark. After that, we'll see; maybe the 9/3 (nine months on, 3 off) protocol or maybe just continuing to 7 years. I'm afraid to stop at five and would kick myself if I recurred without making an effort to stay the course - whatever that's determined to be.I sure as heck wish there were more clarity on this issue.
0 -
hi there haven’t been back on the site for quite awhile. Finished ten years on tamoxifen and have now been discharged from the med onc that was regularly checking me.
I was a little nervous about all this but so far no problems
0 -
Hi mumito! So glad to see a familiar name. I too was discharged from my oncologist last October. Apparently he had studied my case in med school and knew every detail of my treatment history. I was on Arimidex for 10 years and he felt that further treatment was unnecessary and could cause heart problems.
I was rather nervous about being cut loose. However, I definitely felt a difference in stiffness and aches about a month after stopping the Arimidex. Keeping fingers and toes crossed.
I hope all is going well for you.
0 -
I have been off AI 10 weeks now. First thing to improve was my depression. At about 5 weeks I noticed a tremendous difference in the depression and like "Cowgirl" I didn't realize how bad the depression had been until it started to improve. Also brain fog. I'm thinking more clearly about everything. The joint pain in hands and knees didn't start to improve until the last week or so. I was beginning to think it was permanent. But the last few days I have noticed less swelling, and less pain, and am able to walk now without my cane. The first day I left my cane at home was incredible. My lower back is starting to improve as well. I can stand for longer periods of time without having to sit down. I also have more stamina. The fatigue has begun to improve. Before I stopped AI's I was honestly considering getting a walker. I was on AI's for 7 years.
0 -
Just finishing my second month off of Tamoxifen and really notice a big improvement in my energy level. I used to be bagged bye 9 now I can easily stay up till midnight.
No improvement in my arthritis though was hoping I could cut back on antiinflam meds but still need them to function..
0 -
Could I please ask for your advice? I've only been on anastrazole for 4 months. I was reading about MSM being good for joints (is that organic sulfur?). Has anyone tried that, how much do you take and where did you get it? Would you have any other advice on joint pain? Thank you so very much, I am most appreciative for all your help! Lisa
0 -
Missouri Cat
I have taken a Glucosamine Chondrotin supplement with MSM by Bluebonnet. The recommended amount is 3 capsules a day on bottle which gives you 1000mg Glucosamine, 500mg Chondrotin and MSM. There is also Vitamin C in this blend. It’s an excellent product.
I take Turmeric now. Physicians Choice brand, another excellent product for joint pain!! I don’t think you need both but when things were really bad when I first started taking Arimidex I did.
I also did acupuncture.....which was amazing. But expensive because not on my insurance plan.
Thank goodness the joint pain has gotten better after about a year and half after my ooph and the start of Arimidex! I do a lot of yoga and strength training too! Should be doing more cardio but I hate it!! 😅.
Maybe some people can chime in about CBD oil which people swear by. I haven’t tried it but I’m super grateful for Turmeric!
0 -
I really appreciate this, CBK. I'm overweight, but Monday started the DASH diet with my husband, and walking. Shin splints and leg cramps get me at night, but I have a Fizzy Magnesium drink that has been helping. I am going to have my husband pick up the MSM at the natural food store on his way home from work, and I think I can get Turmeric at Walmart. Maybe both for a little while would help the pop in my knee. I needed to reach down and unplug the power strip on my computer and was afraid I wouldn't be able to get back up! I have some yoga shows taped on my DVR and someone said they have chair yoga on You Tube!
Just knowing the joint pain may get better gives me hope, thank you so much for sharing! Best wishes to you! Lisa
0 -
Awwwww... you are trying to muscle through this so it will get better.
I had to fight like hell thru the aches and pains of the combination of being placed in surgical menopause, Arimidex, neuropathy and going through multiple reconstruction surgeries all at once, but I think I’m seeing the light here. 🙏
Be patient .... and keep trying things one at a time to see what’s working for your body. If you flood your body with too many things at once you won’t know what’s working and what’s not with the supplements.
I truly hope you start to get some relief. And yes it does get better from my experience,but you have to fight!!
Love
KC
0 -
This stuff is great for achy legs at bedtime. I got mine at the feed store, but Amazon has it.
0 -
CBK and farmerlucy, THANK YOU ladies. I am going to get a tube of this. I had a horrible night Wednesday, but was blessed with a better night last night, thank goodness! Your help is invaluable, and I appreciate it so much! I will keep fighting! Thank you, Lisa
0 -
MissouriLady - if you can get pure msm lotion it is excellent. Rub it on problem areas 2-3 times per day (it takes a couple of weeks to work but it does work. Had a crushed elbow and my physio recommended it and it was amazing. There is an institute in OHIO that did a lot of research on it and found it to be very effective for rheumatoid and osteoarthritis. Hope whatever you use it really helps with the pain.
0 -
GiddyupGirl - Thank you very much!!! I will look! I appreciate this, thank you! Best wishes, Lisa
0 -
in answer to OP:me. 1 month down, 119 to go. 8-10 hit flashes/night sweats preceded by need-to-sit-down dizziness. And my thumb joints hurt like hell. And tired, tired, tired. Hoping these SEs abate.
0 -
Hi Ched,
I messaged with a moderator about trying to combine your question with similar ones, but different medications...it can't be done, and there are already SO many topics under hormonal therapy, that their suggestion that I start a new topic did not appeal.
I wanted to share that my experience was similar- right at five years of Tamoxifen, my oncologist gleefully told me that new research ( I now know it to be the massive ATLAS study out of Oxford ,) showed a 50% decrease in recurrence with ten years of any of the medications.
I finished my ten years in August, 2016. I am now, after misery, pain and disbelief, on Accutane( generic) for an extraordinarily severe case of Cystic/nodular acne. Hormonal therapy blocks estrogen, but there is some significant connection to Androgen effect on the sebaceous glands- mine progressively produced so much excess sebum, I could have been either in the circus, or a leper colony.
The physiological and psychological effect of this has been way worse than cancer treatment, and Accutane, which has VERY significant side effects, is the treatment of last resort, and is the only medication that will both shrink the sebaceous glands back to normal, but do it permanently.
For breast cancer survivors to face this after finally FINISHING, is such punishment. I wrote to a large number of breast cancer and cystic acne researchers, but did not receive a single reply.
If I had to do it again, I would do only five years, and I should sue my onclogist for a gross exaggeration- the decrease percentage in a recurrence of the SAME cancer with 10 years of hormonal therapy versus 5 is 2-3%, not 50!!
0
