How Many are doing 10 years on Aromatase Inhibitors
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I'm taking this article to my MO at our appointment to discuss swapping me to an AI......
Breast Cancer May Return Because Cancer Cells Evolve To Create Their Own Food
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I am coming up on 5 yrs of aromatase inhibitors in August. Arimedex, then Aromasin, then Femara, (the first year) since I felt like I was 110 every morning, hips hurting so much. Then a year of Tamoxifen (onc said better than nothing, even tho I am postmeno) Still bad on that. Went back of Aromasin, been 2.5 years. 4 trigger thumbs (2 on each hand) and De Quervains now 2x on right. Cortisone shots have helped greatly for 8-10 mos each time.
I think my oncotype was 31! Bad! the only weird thing was the ER level on theirs was less than 5% while on my onc's pathology it was 30%. My onc and pathologist showed me their tests and swore by them. But being BRCA1 positive kind of made me more high-risk. I have this feeling when I discuss this in May at my check-in he is going to recommend staying on Aromasin. I just hope, given how low my estrogen seems to have been, that it's actually doing something.
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Hi,
I took Tamoxifen for five years followed by Arimidex for five years and Aromasin for five months. Now I have switched to Femara since it is the only one allowed from my insurance company (Blue Cross) to go with IBrance. My oncologist said I will always be on a AI as long as I live.
Nancy
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lisa2012 - boy are our dx and timing similar. My tumor bigger at 1.4 cm, onco 39, dx 11/11/11. 0/1 node BRCA2+ Coming up on 5 years in August too. Luminal B. ER+ PR-
I see my MO in May and last we discussed BCI, she was waiting for more info (that was in late 2015). Has BCI become standard protocol or are some MO's still waiting for more info? When I saw her in October she suggested doing Prolia shots, though my bones are stable. She said studies have shown it lowers recurrence rates, though at the time she mentioned a different drug with similar actions on the bones, but when I called the nurse she called back with MO wants you to do Prolia instead.
doxie: " I'm making an assumption that my risk stays the same from year to year, which Luminal B more or less seems to. Don't know about Luminal A. If risk is weighted heavier in the first five years, then there is even less actual benefit to continuing AIs."
From my understanding, Luminal A is weighted on the back end. After 5 years, the risk of Luminal B drops to that of a Luminal A and since I remember my MO saying some Luminal A's have returned as much as 15 plus years later, is that true for Luminal B too?
From taking an upper division stat class in college I remember this little conundrum of "Let's Make a Deal." From the outset, you have a 33.3% chance of picking the big prize from one of the 3 doors. After 1 door has been opened and NOT revealing the big prize, you still only have a 33.3% of winning the big prize, not 50%, which might be the intuitive answer. So that's tells me that my 18% risk of recurrence (including the 9% benefit from chemo and a confidence interval that is plus or minus of significance) as determined by my Oncoscore of 39, over 10 years from dx is still 18% 5 years out! In other words, we do not knock of percentages, like notches in a bed, every year we get past dx.
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Quinn Cat- Hi- You are the only other person besides me that I have heard of that the MO has prescribed an infusion that is intended for Osteoporosis to be used as a preventative measure to keep the cancer from going to the bones. I receive Zometa infusions every 6 months for 3 yrs for preventative, my bones are fine. I am not sure if this is new research or not- My previous MO started me on these infusions but my new MO said it was up to me if I wanted to continue- I hate hate hate that- I need her to advise me. Zometa though good for the bones can break down that jaw bone. I had to get a dental clearance to start it. My Dentist insisted on replacing all my silver fillings and put in 3 crowns so 6 K later, I was released to start Zometa. I am coming up 4 years and hope my new MO will to the BCI for me, she does not seem so proactive so I am wondering.
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Quinncat, I saw somewhere that luminal B was closer to triple negative after 5years the recurrence stat drops. But I think our risks are higher than someone who never had cancer.
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Quinncat and all- what is lumina A and B? What is BCI? My bones were good a year ago, in fact the radiologist asked what my secret was. And I get confused over the recurrence stats and the survival stats! You could have a recurrence and still be alive and in the survival stats, right?
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ndgrrl - why would your dentist have to do that first (replace fillings with crowns?). That's confusing to me. Ok, you say "infusions," do you mean shots? I was told a shot every 6 months. Prolia was not what was mentioned to me first. For the life of me, I cannot remember what the drug was she mentioned to me last October, but it sounds like one of the Stage IV chemos. When I called back to the office last month saying I would do it (after a bone scare) the nurse called me back and my MO told her it would be Prolia, not the one she had said before.
lisa - I'm not the best to explain Lum A versus Lum B, but I will tell you there are plenty of discussion on BCO and in their information section about it. What it is morphologically, I have no clue, but it is determined by whether PR is high or low to non-existent and one's Ki67 score (like > 13% would be Lum B; low to no PR would be Lum
. Lum B is more aggressive than Lum A. Can be Her2+ or Her2-. But please do a search and you might get better info.BCI - another test that has been discussed here and elsewhere. Somehow it indicates the fruitfullness of continuing past 5 years on AI's. Breast Cancer Index.
Meow When you say closer to Triple Neg after 5 years (I like that!) do you mean it mutates into TN or the recurrence rate? Oh that would be nice, since most TN's recur in year 1-3.
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BosumBlues - do you have a copy of a pathology report? That's where I found my Luminal status.
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I have not been on here for awhile. Quinn- my dentist insisted on doing a ton of dental work because he said while I was having Zometa infusions for the next three years I would not be able to have any dental work besides a cleaning- but who knows- he may have known I was in a vulnerable situation and took advantage.
I receive zometa infusion- meaning IV every 6 months for prevention of cancer going to the bones. Not many are doing this yet- My old MO was really up on it and wanted me to do it because of the amount of cancer BC and others in my family. BRACA negative but 4 of us dx in 2013 ages 33 to 60 so he wanted to watch me closely. My new MO seems more like MEHHH its up to you, do what you want. I so hate that!!
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I haven't posted on the BCO site for close to 4 years, although I do check in once in a while. A big hello to SpecialK and Lago (should they see this post) who helped me so much during my treatment days 6 years ago! Your support meant so much! I am posting today looking for a solution with a very distressing problem. I finished my 5 years on Arimidex last December. My MO suggested I took a month-long break and then continue with another AI. I did fine on Arimidex for the first 3 years and struggled for the remaining 2 years with knee pain, insomnia, dry eye, and most distressingly hair loss. I am barely in my mid-50's and not ready to become bald!! Because I am Her2+, my MO is really in favor of continuing with AI for another 5 years. Anyone out there experiencing extreme hair thinning while on AI's? I had beautiful, thick hair before chemo which came back at first and then started to gradually thin. I am very close to stopping taking AI all together because of the hair issue alone, but the recurrence risk scares me. I am already taking biotin and that doesn't seem to help and I am at a loss of what else to do. Any suggestion will be appreciated.
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Actually, semiannual doses of I.V. bisphosphonates (Zometa, Reclast) are fairly common for postmenopausal bc patients on AIs who have been diagnosed with osteopenia and cannot take the oral versions (Fosamax, Boniva) due to acid reflux disease. Prolia, a shot, is newer with lower incidence of the same side effects, and is much more expensive. Both show promise in preventing or delaying bone mets, but Prolia is a bit more effective according to emerging data. My PCP is not convinced that these bone treatments are really effective in delaying osteopenia or its progression to osteoporosis, but he’s okay with my taking semiannual Prolia shots because of their anti-bone-mets potential. For my osteopenia, he recommends calcium/magnesium/D and weightbearing exercise. (And improving my balance to avoid falls).
I told my PCP today that after nearly 1-1/2 yrs on letrozole, the joint SEs haven’t been too bad because I take it at night along with arthritis Tylenol (generic) and then celecoxib in the morning. But he cautioned me not to get too cocky—his patients who are on an AI seem to show cumulative effects snowball towards the end of treatment. He mentioned an article I also read, which stated that for women >65 with Stage IA Luminal A bc, there is no real benefit to continuing an AI past 5 yrs because the QOL issues outweigh the anti-proliferation activity of the drug. So unless I recur before 1/1/21, I probably won’t even take the BCI test—just stop the letrozole and keep my fingers crossed. He is surprised to see I gained only 9 lbs. since I started taking it. But he is concerned what it did to my lipid panel last Aug. (total chol. was 305 before and after, but my LDL doubled while my HDL dropped from 95 to 70), so he took another panel and will put me on Crestor 5 mg. if it’s still bad. Also waiting to see what it has done to my glucose and a1c—may have to go on Jardiance or Invokana if it’s already up, and almost certainly after I’ve been on the statin for awhile.
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Hi. I am on Zometa infusions only because of a trial saying it will help keep the cancer from going to my bones. I do not have Osteoporosis or Osteopenia, my bones have thinned some since being on an Ai for 10 months and being on the Zometa.
I had never heard that Ais side effects can snow ball. WOW.. I hate to have to treat side effects of one drug with another, just hard to know what to do.
Does a statin cause your blood sugar to rise as well and does Femara cause blood sugar to rise or cause diabetis?
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Statins raise blood glucose and a1c and the antitype2 diabetes drugs (metformin, Jardiance, Invokana, etc.) raise LDL. At our age, seems you can't fix one thing w/o breaking another. Letrozole is the only AI that significantly raises LDL, but it's more effective for DFS, MFS and preventing contralateral primary tumors. It supposedly has no effect on blood sugar
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yesterday I had my check up with my MO after my last dose of chemo on April 11th. This is my second cancer and it was a new primary ilc however I have already taken 5 years of Arimidex and dear God I don't want to do it again so after speaking to my oncologist he is going to run and I wish I could remember the name of the test but I cannot I knew testing to see if my tumor is actually going to be responsive to Arimidex has anyone had this test done ? I guess it's brand new and he has not run it on anyone else yet but he thought I would be a good candidate!
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OG56---Is it possible he was talking about the Breast Cancer Index test? It determines whether staying on hormonal therapy would be of benefit? If so, my MO (as well as another MO who is a family friend) both strongly recommend it. My MO says he does about 20 a week and my MO friend says he now does about 60 a week! They both feel it's a terrific addition to our arsenal. I will be almost 5 years in Sept so that's when my MO is doing mine. The family friend even says it's proven to be accurate to 99.9%! This test will decide if I stay on Tamoxifen, swap to an AI or go off any of them completely. However, I have no idea if insurance pays for this but I'm saving my pennies because it's worth it either way to me.
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Hi- I had not idea statins could do that. You said that Letrazole is more effective for DFS, MFS and preventing contralateral primary tumors. Can I ask you what DFS, MFS and contralateral tumors are?
Thanks
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DFS: Disease-free survival (length of survival without or before any recurrence, distant or local)
MFS: Metastasis-free survival (length of survival without or before recurrence to a distant organ, i.e., beyond breast and lymph nodes)
Contralateral: the opposite breast
Ipsilateral: the same breast
OS: Overall survival (the length of time until death from any natural cause, not just breast cancer; but does not include death by violence, natural disasters, or accidents because those causes are not at all predictable and are irrelevant to the state of the patient's health during her lifespan)
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ChiSandy - I so appreciate your comments and posts on these boards!
Patt
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Thank you Lala that is the test!
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I took AIs for 6 years, and I regret not stopping I understand my oncologist wanting me to continue longer than 5 years because I was stage 3b locally advanced invasive lobular. I took every one of the meds: Arimidex, Femara and Aromasin. For the first five years I struggled with the side effects of joint pain, extreme fatigue, sleeping issues, and hot flashes. From year five to six I felt HORRIBLE so I finally declared that I could not do this any more. Since stopping in 2013 I've had to have 2 spinal surgeries, go to a sleep specialist, and continue to struggle with fatigue. I contribute most, if not all of this, to the continuing blockage of estrogen. As ruthbru's oncologist said----these are serious drugs, and not enough studies of the effects of taking long-term. If I had a "do-over" I would have stopped at year 5 or earlier because I would like my quality of life back.
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Amelie-Rose - I have definite thinning on top. I never noticed it thinning over time, but after chemo it just came back thinner top, though my MO said it is the exemestane. She also thinks, once I'm off the AI, my hair will come back. Really?? I haven't seen on person post that in BCO!! If that is true, well God is good. As far as taking AIs past 5 years (for me, this August), my MO says there is only a tiny benefit to continuing past 5 years based on research. Must be new research as she couldn't tell me that a year and a half ago. I asked her if people get nervous once they stop and she said "definitely." And then we both said I would fit into that category and she thought for that reason alone I might continue for another year. BUT when she said my hair would come back, well, hmmm, hard choice.
Does anyone know if thinning hair comes back after stopping AIs???
Zometa - that was it! Last November (I see her every 6 months) she asked me if I wanted to to consider taking it. By March I had decided yes because of a small scare, but she said it would now be Prolia. It's been a week and a half since the shot and I've noticed a small amount of acid-reflux, one instance of bone pain in my left forearm and right lower jaw. Of course, my awareness is much more heightened after reading the SE sheet.
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Hi All,
I am waiting for a second opinion as to whether I should continue with Letrozole post 5 years. Like you, Quinn cat I have been told there is little to no benefit of continuing beyond 5 years and can go on Tamoxifen if I want. I feel nervous to come off these drugs completely, but maybe that's just what i now need to do .I sure don't want to be on them if i don't need to be.
I too have hair thinning on top. and like you I felt like it did not really return as thick post chemo. I really want to know if the hair returns to normal post these drugs, but like you I cannot seem to find any definitive answers.
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Quinncat, thank you for sharing what your MO said. Like you and Wintersocks, my hair came back looking slightly thinner on top after chemo. I had nice, thick hair before my diagnosis. Since I started with Arimidex right after chemo, it was hard to tell whether the AI or chemo was to blame at first. However, when I compare my pictures from even 2 to 3 years ago, I can definitely see a difference. The thinning is progressive and scares me. I don't know how can continue for another 5 years. I read on an older board that Aromasin is gentler and doesn't affect one's hair as much. Does anyone know this to be true? My MO strongly recommends that I continue with AI because, although small, my tumor was HER+. I will have to ask her about this new study you mentioned. If the lack of estrogen is what causes the thinning, then it makes sense that your hair would come back if you stopped. Thanks again for replying.
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I'm not a doctor and am not recommending one way or the other; we are all different. But I thought I'd chime in with my experience. I was on arimidex first. Horrible hot flashes, weight gain, joint pain was extreme. Switched to aromasin. The joint pain got better, still the hot flashes, etc. Switched to femara for a short time, but still felt the same, so switched back to aromasin. At the end of my 5 years, I went to my appt. with print outs of studies ready to fight it out with my doctor because I felt sure he'd recommend continuing another 5 years (I was diagnosed with ovarian cancer after the breast). To my surprise, he told me he was fine with me stopping the AI. He said my side effects had been so severe that he was surprised I'd stuck it out the whole 5 years. And the benefit of continuing was 2 to 5%. The studies mostly show benefit in preventing cancer in a remaining breast, and I'd had a bilateral mast (even though the cancer was just in one breast). I still have hot flashes, but they are much milder, mostly just at night (so, yes, still some sleep issues). My hair is a lot thicker too (it's been 8 months since I went off the drugs). Overall, I feel a lot better. Time will tell on bc recurrence or not, but I feel good about my decision.
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LadyinBama - thank you for your info. Your hair actually came back after quitting AIs?? That is good news, for many of us, it seems. And the fact that taking AIs post 5 years mostly affects contralateral BC, interesting. I too had a BMX (I am brca2+), though I still have a 1-2% chance of getting BC without these things!.
Sorry to hear you had ovarian cancer too? How is that going? Did they catch it early? Are you brca+?
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QuinnCat: No, the ovarian was diagnosed at Stage 3, which is the case in about 85% of ovarian cancer. There is no screening test and signs are subtle and are things women have all the time, so it's hard to diagnose (bloating, abdominal pain, changes in urinary frequency, feeling full after eating less, are the most common symptoms. It can be related to hormones and to BRCA+ also, so please be aware of what's going on with your body (check out www.ocrfa.org for more information on what to watch for).
My onc recommended taking out my ovaries at the end of breast cancer treatment since my BC was hormone positive, and I was 53 and was actually premenopausal (at least before BC chemo). Surprise! Three surgeries later, a diagnosis of ovarian cancer and 6 more chemo treatments. It was quite a time. In 18 months I had 10 surgeries and did 12 rounds of chemo for breast & ovarian cancer. Then the 5 years of hell on the AIs. But I'm blessed, I'm now 6 years out on the ovarian and 7 years out on the breast cancer and doing well.
I'm NOT BRCA+. In fact, we have a biotech company here in Huntsville, Kailos Genetics, who offered an expanded genetic panel of 28 genes to test for a study they were doing, so it was reasonably priced. I did that one too, and all negative. I trust all you ladies know that being BRCA- doesn't mean you are in the clear. Genetics really accounts only for 5 to 10% of cancer cases.
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Lady - I had the brca test (myriad at the time in late 2011) after my dx, but before my scheduled lumpectomy. To all, surprise surprise, I was positive for brca2+. Immediately sent for PetScan and transvaginal ultrasound. Lumpectomy rescheduled to BMX and after 5 months of chemo, Bilateral Salpingo Ooph . Even with Stage 3 Ovarian you are 6 years out - congratulations. Do they considered ovarian cured at 5 years? Breast cancer saved your life, actually?
I am very interested in how the hair grew back? Did you just lose it on the top? Did you notice it coming back soon after quitting AI's?
btw, my cousins' mother had BC, like my mother (as well as 2 other sisters). My cousin had BC 2 years before me, but no brca testing. Then I got testing and informed her (I did not even know she had BC). She got tested, then her brother. She was negative and he was positive. I always have wondered if there are false negatives with genetic testing.
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They don't ever really considered you "cured" with ovarian cancer, but they do let up on checkups after 5 years. I now have to just go to my regular MO every 6 months and watch for changes/symptoms. Yes, in a weird way, the breast cancer diagnosis saved my life. Ovarian cancer was not on my radar at all, and I wasn't aware of the symptoms and risk factors, which I had several of (long time menustrating, never having had children). I'm glad that I didn't argue with the doctor when he recommend the ooph! Good that you've had it done. Breast cancer is much more treatable and manageable than ovarian, so it's good to take that off the table.
On the hair, my hair came back fine and thin after the 2 chemos. It changed texture, almost felt like a baby's hair. I'd always had thick, coarse, curly hair. I probably noticed it seemed thicker at about 3 months out, and now that I'm 9 months from the AIs, others are starting to notice. I've had a lot of people tell me my hair looks thicker. It thinned all over, but most noticeable on top.
Yes, they do have false negatives with genetic testing, but I've had it done twice and it was negative both times. But it's also possible that not everyone in a family is positive for a mutation. Like all genetic traits, it hits some people and misses others.
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As far as my cousin, it was the fact that she had BC and her mother was positive for brca2 (presumably) and then she tested negative. In away it was good I didn't know she was negative before I was tested or I may have not gotten tested (my family doesn't fit the normal profile of cancer before 50 - more like 3 @ 53 and 1 @ 79).
I assume when you say your hair was coming back after 2 chemo, you still think the AIs were the cause of thinner hair? I don't think my hair started coming back until I finished chemo, but I may have had some down during Taxol? ( I had DD AC/T then 5 weeks of carboplatin for the brca2).
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