How Many are doing 10 years on Aromatase Inhibitors
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Nats, I use CVS. They gave me the Watson brand because this is what they have, but were willing to order a different brand when I asked.
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nats - I fill my prescriptions at CVS and just request the desired manufacturer. If it is something their warehouse stocks (I have been lucky so far) they just order it for me. I have experienced no difference in price either as Rey have a number of generics available.It takes a couple of extra days, but I refill a week in advance to give them time. My CVS branch has been super helpful and cooperative. I did explain to the pharmacist about the particular SE and they made a note in their computer. If you need the brand I believe your MO has to write "no substitutions" to comply with the law regarding filling with lower priced generics first.
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LadyinBama - I just reached my 5 year milestone. My ONC said I'm done with Tamoxifen but wants me to wean myself off by taking it every other day for September and then 1x a week in October and that's it. She said she had patients tell her they didn't realize how much better they felt when they quit taking them. I haven't suffered with bad SEs thankfully andit remains to be seen whether I lose these extra pounds.
There was no doubt I wouldn't do the 10 years. Low Oncotyoe score, small tumor, early stage and low grade.
I have several friends who have to do 10 years. They had high scores on this latest test.
farmerlucy - I'm surprised you have to keep taking them with your low score. I have family history too. My mother and sister both had and have BC.
Diane
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I was surprised, too, Diane. My onc said it was because of my family history. I went to the Johns Hopkins Ask The Expert site and inquired whether family history has anything to do with recurrence and she said No - only the biology and stage, grade and so forth of the tumor. I love my onc, but at this point I doubt I'll continue. I still have 19 months to go because I got a late start. At that point I'll be over six years out. I just don't see doing it if all is well at that point.0
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So this trigger thumb issue seems frequent! I've had it in both thumbs; cortisone shots twice in one thumb and once in the other. Have also had a cortisone shot for De Quervain's that was really painful and persistent. My hand guy says that these thumb issues are common for women on AIs. Why??????
My left thumb is starting to hurt again...
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Trigger thumb is a known documented side effect of the AIs.
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I ended up having surgery on my thumb after the 1st shot of cortisone wore off. This was after being on AIs for three years.
I think the estrogen deprivation sets off a string of problems in soft tissue throughout the body. Some of us have problems in one area, while others have problems in other areas. A lucky few have none.
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I take a whole lot less ibuprofen now that I am done with 5 years of AIs. Alas, I did not lose weight, or at least not until I upped the cycling this past summer. I gained a few pounds during my 8 months of 60-80 hour weeks when my consulting ship came in about a year ago.
In reading the study results, I was underwhelmed by the findings which is as I thought would be the case, as there was no news early on. In thinking about what could be of value in preventing a late recurrence, I am staying with exercise and aspirin (we won't know for sure about aspirin for a few more years). Exercise has the benefit of pushing back many of the other things you don't want happening to you as you get older.
I need to take off another 8-10 lb. to get down to my best fighting weight. My clothes will also fit better as is already the case. Staying fit and strong also means that I can do everything I did in my teens and 20s. I have a vision of my godmother who could barely get out of her chair when she was my age. She loved books so her mind remained active, but was nearly housebound. I see the same thing in the 55+ community where I live. She died a few years later spending her last couple of years in a nursing home.
Besides it's fun being the "older woman" who is still going off for a whirlwind trip of cycling and vineyard camping.
I remember well my last day of AIs. I had a relatively OK trip through them, but I was at a walk that last Sunday, and then wanted to hit the shops in downtown Seattle. I was so glad when I was able to find ibuprofen at a convenience store along the way. Still limped, but the pain was bearable.
All that is gone now - and my bone density is still fine. - Claire
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Where are you all reading that there is a connection with the thumb issues and AIs? I've just been diagnosed with DeQuervain's. Wearing a brace and taking NSAIDs. The shot is the next step. And I really don't want the shot because it's my left hand and that's the side I had lymphedema in. I thought this came from doing my yoga poses wrong or over aggressive use of this hand when gardening (I'm right handed, but for some reason, use my left for yanking weeds). Interesting that it could be connected to AI. I'd like to read more on this. Perhaps it will resolve without the shot if I rest it, use brace and now that I'm off AIs (it's only been a week since my doc said I could stop).
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Ladyinbama,,
I had my shot and trigger surgery on my LE side. I was really nervous about it, but my hand surgeon had done a lot of research and had success with another patient with LE. The shot reduced inflammation, maybe LE, in my thumb and the same after the hand healed from surgery.
If I were you, I'd hold off on surgery until you've been off the AI for a while. It may heal. I had at least another two years to go and knew I couldn't handle the pain or physical limitations of trigger thumb. If I'd been closer, I'd have held off.
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I had some thumb problems as well while on anastrazole, although not enough to slow me down. Almost all resolved now. Mine would lock up, and it was also relatively weak. I think my body is still adjusting to being off the AI, fifteen months later. Eyebrows are much lusher, and I think my hair is thicker.
BTW - I also didn't do blood work or bone density for a number of months after I got off the AIs. Because I didn't want to waste everyone's time treating a problem I didn't really have. Good luck with the thumb. I would give things a good six months. - Claire
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LadyinBama, Here is one link:
http://www.cancerresearchuk.org/about-cancer/cance...
It is listed as a "rare" side effect. If you also look the drugs up, you can see that the FDA lists it under post marketing reports. I think it is more common than they think. A search here will reveal that. My orthopedic hand surgeon said that she treats at least one person per day with carpal tunnel or trigger finger that's on an AI. That surprised me!
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Thank you all. I would never have connected this with my AI. But it was weird to me that I even have this, especially on my left hand since I'm so careful about overusing that side. I will mention it to the ortho doc at my follow up and just continue with the brace/NSAIDs and give it time.
Doxie, Good to know that the surgery and shot didn't cause LE problems. I may let him do the shot since this thing is really painful. I'm hoping my "arthritis" also gets better. My hands and fingers hurt all the time. Claire, I'm so excited to hear your eyebrows have grown back in. Mine are awful. My eyelashes are back, but I take a glaucoma drug that acts like Latisse on the lashes. I also am hoping my hair will thicken up. My NP had said that might happen.
I'm just so relieved to be off this *#$% drug!
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I have had carpal tunnel surgey (both sides), cubital tunnel surgery, and trigger thumb surgery. I am obviously predisposed to them. I had some of them after lymph node removal and did not have any lymphedema, though the risk is obviously still there.
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Ihave had trigger thumb twice in both hands at once., trigger fingers in 2 fingers and carpal tunnel!
They need to update research. I was at a breast cancer survivor retreat. 1/2 of us had one of these issues, . New we're sitting around with our thumb supports and wrist braced on at dinner
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BTW my trigger fingers are gone since I have been off AI
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Hi all, I have been on Arimidex for a year. My hands started hurting within 4 weeks, then eventually my knees. My MO told me to take an 8 week break then to resume if se's were better. I have now been off the med for 2 weeks, knees feel better, hands, not so much. My pcp diagnosed carpel tunnel so I am now wearing the lovely braces. My question is, is this is permanent? Will carpel tunnel go away on its own, or is surgery the only option? I want to continue the ai's as I was highly er and pr+.
Thanks!
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For all of you on AIs;
I took them for about a year, and felt crummy all the time. I already had arthritis, so my joints were even worse. I asked my Onc. about this. I think he only wanted compliance. When I asked about the side effects of the anastrozole, he brushed me off. I had been looking at the side effects, and mostly they were osteoporosis. So I did an end run around that and looked up the function of estrogen in the post-menopausal female body. Turns out the function of estrogen of estrogen is to support bone and joint health, support a desirable lipid profile, and support cognitive function. When I saw the 'cognitive function' part, I stopped right away. The Onc. never even commented on this decision.
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I have been taking them for 9 years. I have had every side effect but they eventually go away. Just remember the side effect of mets.
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Trigger thumb and fingers (yes, both) resolved themselves as soon as I switched from Arimadex to Aromasin. And so did my horrible, awful mood swings. If one AI is too hard to take, try another before giving up completely.
I dislike having to take a medication for 10 years--just the thought of it-10 years!--and the "what-ifs" (what if I take it and endure the side effects and it still comes back, etc., what if I become immune to the medication's effects--what then?, etc.) but I think of my only daughter--only child, who lost her father in May this year to pancreatic and liver cancer--and that's all the motivation I need to try to capture every percent of protection for myself. I don't want my daughter to be an orphan, yet.
Claire
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Just wanted to update everyone on my very last appointment with my oncologist. I have been with him for 11 years and it was bitter sweat knowing I will no longer have follow-up oncology appointments. He, along with my Femara for 10 years, were my security blanket. We had a long talk about my fear of a late recurrence, and I felt much better after our appointment. He told me that my chance of a late recurrence is low, not gone, but low. He said with node positive disease, I had about a 40% chance of recurrence in the first 5 years (that's without treatment I assume). He said there is a one% cumulative risk each year after year 5, and that by taking Femara for another 5 years for a total of 10, I reduced that to one-half% cumulative risk per year. He said my risk now is in the low single digits. He told me he is more concerned now with my bone health since I am now osteoporosis, as well as overall health, than he is with a cancer recurrence, He told me to live my life and try not to worry. He said if the cancer is programmed to come back in year 15, year 20, or year 25, then we will deal with it then, but that is is unlikely that will happen. We talked about taking aspirin to prevent a recurrence, and about taking Reclast or Prolia to prevent a recurrence, and he told me there is no data to show that they prevent a recurrence. He told me to only take those drugs if I need to for bone health or cardiovascular health, which I do need to take Reclast or Prolia for my newly diagnosed osteoporosis. I asked him if he had a preference if I took Reclast or Prolia for osteo and he told me that was a decision between me and my endocrinologist. He really made me understand that there is no magic pill I can take, and that I just have to move on with my life knowing we did everthing we could to beat my cancer. Btw, my oncologist is a highly respected oncologist who is a member of ASCO, and involved in many clinical trials, to include the one released this year and posted here from the New England Journal of Medicine on taking the aromatase inhibitor Femara for 10 years. I do think he is in favor of taking Femara for 10 years for node-positive disease.
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I developed my trigger thumb after chemo but before starting hormone treatment, so I can't blame it on the hormone treatment. My good friend developed trigger finger in three fingers after menopause, and has never been diagnosed with cancer. It's basically the low estrogen that makes the joints more susceptible, which explains why the AI's increase the risk for developing the condition. I hope to avoid any more trigger fingers come fall when I switch over to an AI.
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LizM - thank you so much for your post. As you know, I had a similar dx 1/18 nodes positive but grade 2 - dx in 2006. I'm finishing up my last few months on Letrozole for total 10 years. Last year I switched from Zometa infusions to Prolia injections as much easier for me - and noticed less body ache afterwards. Now hoping we are NED for many more years! Hugs to you!!
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Why are you not going to see the oncologist? Even though you are going off the medicine, it seems checking in once a year would be helpful to find out about any new research, survivorship strategies, etc. After five years, my oncologist has switched me to every six month visits instead of every four months. The first time around, my anxiety got really high and then I sort of fell off the wagon with remembering appointments, exercise, etc. I think the appointments helped keep me not track. My MO indicated it is not unusual for patients to "fall out" of treatment after about five years. I'm working at doing better.
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LizM, thank you so much for your latest post regarding the end of the 10 years of Femara and speaking to your oncologist about your future and recurrence. It is so helpful hearing this from others who are also this same path.
As you can see I had the same diagnosis as you, except I didn't have mastectomy nor chemo, so I sometimes feel I wasn't given the optimum treatment, however I am still here and continue to take Femara. It is actually almost 9 years since I commenced Femara, however having to take a few breaks from it along the way due to side affects, I still have another 1.5 years to go to reach the 10 years. Due to bone loss however I probably will have to switch to Tamoxifen in the next few months, as the loss continues to get worse and the drs are concerned about the amount of bone loss I have had, particularly in the last 2 years.
Thanks again for your update, and great news to hear that you are still well and that the chances of recurrence are quite low for you now.
regards Ched
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Golden01, I don't think it is unusual to stop seeing your oncologist for early stage breast cancer after 10 years of follow-up, if you are no longer taking any medication. My oncologist knows I will be seeing my endocrinologist for osteoporosis, and my PCP for all other issues. He and I both know that he is there if I should need him for any breast cancer recurrence scares, but he does not need to see me for an annual follow-up any more. As far as staying updated on the latest breast cancer research, there is no better place than this site for that.
CP and Aussie, hugs to you both. Btw, I do not feel any different since going off Femara. However, my bloodwork last week was better as I didn't have any numbers out of the normal range.
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I'm pretty sure after 10 years my visits with my oncologist will be every other year…if she hasn't retired by then
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I talked with my oncologist today and she said that if your ER score was more than nine on your Oncotype DX test then 5 additional years of hormone therapy is recommend. It seems like the BCI score closely relates with the ER strength for recommending the additional years. She said that usually only 3-5% of patients fall into that category. My ER score on my Oncotype DX was over a 10. Lucky me, not
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I do believe if you have or had node involvement, it is to your advantage to take one of the inhibitors! I just finished my 11th year! I am done now, and I am 12 years out!!
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Hello. I was diagnosed in 2008 with
T3N1M0
(III-A) invasive ductal adenocarcinoma, ER/PR+, Her2Neu- . After chemo, double mastectomy and 6 weeks of radiation I was prescribed 5mg of letrozole a day. Little did I know this was an error and I took it for 1.5 years at double the dose. I completed the 5 years and was told last October I needed to take it for another 5 years. I am now taking 1mg of Anastrozole. Side effects from the first round have never went away so why not? Does anyone know anyone else who was prescribed the wrong amount? I cannot find studies or anything to help determine what that has done to me.
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