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Rejecting hormone therapy



  • lillyishere
    lillyishere Member Posts: 757

    Beesie and Rah, what type of SE are increasing after 2 years of letrozole? I read somewhere that the peak of SE is 6 months and then 2 years. I wonder if they are short-time SE. I am approaching 2 years and finally, I am getting used to fewer SE of letrozole.

  • sunshinegal
    sunshinegal Member Posts: 67

    I'm also interested in what SE increased at/around 2 years. I'm just one month in to letrozole (almost 3 mo in to lupron) and the side effects are noticeable but manageable (hot flashes, some cognitive issues). Effexor has been helping with the hot flashes.

  • mom2bill
    mom2bill Member Posts: 6,949

    Rah2464 and Beesie, It is disheartening to hear that your Tamoxifen side effects are getting worse over time. I have just completed 18 months on Tamoxifen and have been clinging to the hope that once my body “adjusted” the side effects would diminish. My side effects are like waves…they build up for a period of time, and then subside, only to build up again, but they never go away. Like Rah, I switched to taking it twice a day and feel like that has been somewhat helpful, but I’m exhausted and truly takingthings one day at a time with the hope of limping across the 5 year finish line. I don’t think I will make it beyond that point.

  • KateHanni
    KateHanni Member Posts: 70

    The NCIC Clinical Trials Group (NCIC CTG) MA.27 is the trial I was referring to. The schematic which shows the breakdown of folks that left the trial for different reasons and I added them together and rounded them to the nearest 10's. If you add the lost to followup, adverse events, off treatment other illnesses and patient refusal together you are almost at 50% for each AI....but then there is the chemo therapy which I had not noticed. If you go to the trial itself and try to see this graphic, it's nearly impossible for my myopic -10 eyes, even with my contact lenses so yeah...that's my excuse!


  • Kate, I included a reference to that study in my previous post. It is the study that appears to have the highest drop-out rate.

    When I add up all the drop-outs from the chart you posted, I come up with 25.1%. But the actual rate is higher. Here is what the study report itself says:

    NCIC Clinical Trials Group (NCIC CTG) MA.27 trial: "Between June 2, 2003, and July 31, 2008, 7,576 patients were randomly assigned, 3,789 to exemestane and 3,787 to anastrozole.....Compliance was poor, with a 31.6% discontinuation rate (33.8% and 29.4% in exemestane and anastrozole groups, respectively) for adverse effects, concomitant diseases, or study refusal."

    31.6% is certainly a high drop-out, but it's well below 50%.

  • Tapwater33
    Tapwater33 Member Posts: 4

    hey guys I'm new here. I just finished 10 years of Tamoxifen. It gave me DVT. My super vena cava was almost totally blocked by a blood clot that meshed with my port.I had swollen in my upper body by 20 lbs of water weight and was blue as a smurf. 4 failed heart caths. Had to go to Shands in Florida and get a vascular surgeon to remove it all. Thank God he could do it. Anyways I have a new onco from my first awesome one. He left and now I'm stuck with the idiot.
    Anyways, So now I'm getting to what I wanna talk about. My original dr told me if my cancer hadn't come back in the first 3 years it probably wouldn't come back. I had 3 other drs tell me this too. I should have been done with everything ALL treatment. I was so overwhelmed by the heart thing that I just blindly took the suggestion from idiot dr that I should be on letrozole and zolodex. Because his reason was that I was high risk. Well I did my 10 years damnit. I should have thought about it before I said yes. Anyways I started it and after 3 months all the side effects came on like a hurricane. Totally debilitating. But here's the kicker, I could handle everything except one day my hair just started falling out in handfuls. Well I freaked out needless to say. I could not handle it. I had been through chemo and done the whole bald wearing wigs etc. I was not expecting this. I stopped taking that sh&$t right then. I cried my eyes out cause I have long hair down to the middle of my back and I just learned how to curl it with a flat iron. Beautiful hair. I can tell I lost hair, but no one else can. whatever percentage fell out in a 2 week period. I cried my eyes out every day. So yes needless to say I stopped taking it because of that. I said f;k it. If I get cancer again and die I'll be happy to live however long I can feeling good and looking good for myself. For me no one else. It's my choice. I'm not living out my days physically debilitated and bald da$mit.QUESTION 1: I'm just wondering if anyone else has stopped this particular treatment because of side effects? I looked up pictures of women hair on this medicine and I freaked out even more. May seem vain and selfish but it's my life. My husband agreed with me and supports me believe it or not. I got my 10 years of hell on Tamoxifen and I'm done. Whatever I get now is just gravy. Oh yeah I'm bipolar too, major depression. That probably has some bearing on my decision too. I'm medicated so I'm not crazy like I was when I was younger. My other QUESTION: does anyone else have a mental condition dealing with all this cancer crap too? Thanks for anything you can share with me.

  • Tapwater33
    Tapwater33 Member Posts: 4

    oh yeah I was diagnosed at 35. I’m 46 n

  • rah2464
    rah2464 Member Posts: 1,192

    Lilly and Mom - fatigue, hot flashes and brain fog are my big players right now. For me also symptoms can arrive in waves then subside. I do think other changes in my body are amplified by the medication. I am getting older, I am truly in deeper menopause now, I had a bone treatment that is adding to the bone aches and pains. It has been a rough summer for allergies so I think that changes how I tolerate other things. I am going to keep plugging away as I can with my little pill vacation in November as my reward. I have noticed that I cannot layer on much other medication without becoming truly zombie like. My body just isn't very efficient at processing a lot.

  • threetree
    threetree Member Posts: 1,031

    Rah - I have found a similar thing with the Letrozole that I take. I had very mild arthritis when I started the drug, but the side effects make it much worse. I also cannot pile on other drugs; even over the counter stuff. It all makes me feel worse and the side effects of everything get worse. I've seen where many on here add all sorts of other drugs, take over the counter for pain, stomach acid, etc., but all that stuff just makes me feel worse. Unfortunately, all these other drugs seem to be the dr's solution for side effects, and they just don't work for me. In the case of letrozole, one's estrogen levels are lowered and I think that in a "normal body" estrogen plays a role in not getting so many side effects from drugs we take. I think that what tamoxifen does probably has a similar effect, since it blocks the action of estrogen. Estrogen is such a vital part of our "operating system" that when it's not there in normal amounts, all sorts of things can go haywire. I am always tired too, brain foggy, and never really want to do anything (although I do).

  • lillyishere
    lillyishere Member Posts: 757

    Rah, thank you for getting back to me. Yes, I already have these SE since I started letrozole. I do have insomia, body aches, brain fog, etc. and what I am learning is that I am very sensitive to pain since starting letrozole however, I am still being like a good solder and taking the pill everyday. The fear of recurrence is so much higher than these side effects. I am worried if other SE will come along while using letrozole and how do doctors measure toxicity levels in patient's body from long term use.

  • Rah, Mom2Bill, I'm on Letrozole, not Tamoxifen. I don't know how it would work with Tamox, but with the AIs, it makes sense that after depriving our bodies of estrogen for a couple of years, we start to see a increased or new side effects.

    Lilly and sunshinegal, to your question, I have a bunch of health things going on so it's hard to know what is caused by the Letrozole and what is caused by other things. I've had osteoarthritis since I was in my early 40s (I'm 65 now) and have had bone and spinal aches & pains for 20 years, so it's impossible to know if the pain in my back and knees (I feel like I'm 95 when I get up from sitting) or the new pain in my hips is from the Letrozole or the OA. My OA pain tends to come and go - I'll have a period of a couple of weeks up to a couple of months where one joint or area is very painful, and then it will go away. My hip pain seems more constant, although the level of pain fluctuates a lot; sometimes it's very painful other times it's just a twinge. My MO thinks it's probably the Letrozole, although I have had an x-ray that showed arthritic deterioration. Also, whether it's related to my hips or something else, over the past few months I've discovered that crouching down and getting up has become really difficult. Exercises are really helping with that.

    Brain fog... yeah, I think so. But I've had ENT issues with allergies/congestion for years and over the past year it's been particularly bad (including persistent swollen nodes in my neck so I now get neck ultrasounds every 6 months) so I don't know if the brain fog is because my head is stuffed up so much or because of the Letrozole.

    There are a couple of really weird things I have going on too. I had some oral problems and it turns out that I have some degree of dry mouth - which can be a side effect of Letrozole. At the same time, I developed very small blisters at the corners of my lips. It never would occurred to me that this could be from the Letrozole until I read this on a list of side effects: "sores, ulcers, or white spots on the lips or in the mouth" So maybe, maybe not.

    The other weird one that I've developed is what I call 'fatty deposits' on the side of my knees and my legs - and exercise does nothing to help this. Is this just fat redistribution from aging? Maybe, but no one I know who's the same age has. Or is it similar to lipedema? To me, the appearance fits all the descriptions of lipedema, although at this point it would be considered a fairly minor case (very noticeable to me, not very noticeable to anyone else until I point it out). Interestingly, estrogen fluctuation is one of the triggers for lipedema development, which often manifests at menopause. Lipedema is not stated to be a side effect of AIs, but could the estrogen deprivation be driving this change in my body? I think so. My MO is open to the idea, commenting that estrogen affects pretty much everything in our bodies and everyone reacts differently.

    And then there is my hair. My thick (individual strands) and plentiful (lots of strands) head of hair is no more. The strands of my hair are now fine rather than thick, and I have many fewer of them. This side effect is definitely from the Letrozole and became noticeable to me probably about a year ago or maybe a bit more. I take biotin every day (MO approved), I use thickening shampoos and treatments, and while I didn't splurge on the iRestore hair helmet, I did purchase the wand, which I use every second day. I'd say that it's all working because these days I don't think I'm losing any more than the normal amount of hair and I think my scalp coverage is a bit better than it was 6 months ago.

    That's the short list of my side effects, although if I think about it more, I probably could add some things to the list.

  • lillyishere
    lillyishere Member Posts: 757

    Thank you so much Beesie. I am over a decade younger than you and I started letrozole without any aches and pains on my joints, normal bone density, lots of hair, etc. and within few months of letrozole, all the SE rushed in and I felt very overwhelmed and scared. I called the doctor's office and I asked them what is going on with me, a sharp change in losing muscle, hair, skin got so thin, aches and pains that I never had before. I was told because I was fast-forwarded to menopause however, I do think letrozole is mostly guilty. I also figured out, in my case, that certain food makes the symptoms worst or better. I can't have spicy food that I love, wine, or spices like turmeric, etc. since they aggravate my SE. So, it is not your age, it is fast-forwarding our age because of this medication.

    Do you mind if I ask you want is wand you use for your hair?

    Thank you as always Beesie.

  • Lilly, I have the HairMax Prima9, which looks to be no longer be available. This one seems to be the replacement for it (it looks the same and the description is similar):

    Whether it's the wand or the biotin that's got my hair loss under control, I don't know. Maybe a combination of both. In any case, it seems to be working so I'll continue with both.

    By the way, bone density... initially not a problem for me with the Letrozole. My baseline dexa scan showed mild osteopenia; my 1 year dexa scan showed absolutely no change - which really surprised me. I'll be doing another dexa scan in a couple of months so we'll see what that one shows.

  • threetree
    threetree Member Posts: 1,031

    Beesie - It's interesting what you said about your sinuses. I too have had routine sinus problems for years, but I've always been able to get them under control one way or another. During the last few months that has not been the case and my sinus troubles have never been as bad as they are now. I have wondered over this time, if it wasn't a Letrozole thing. I googled, "Does low estrogen cause sinus problems" and something did come up (sorry no citation as it was awhile ago) that said that yes indeed, low estrogen can cause some kind of non allergic sinusitis.

    It's not a big issue that I hear others discuss on here, but I'm thinking that for some of us, this could be just one more side effect.

  • jennyjo20
    jennyjo20 Member Posts: 28

    ThreeTree and Beesie,

    I have been having the sensation of stuffed up sinuses for the past few months but strangely, ONLY at night. No mucus or anything, it just feels like my nasal passages are swollen shut...again, only at night. I am currently on Lupron/Arimidex and although I have acknowledged that this was a new thing for me, I somehow never considered that it might be related to endocrine therapy. It hasn't been terrible for me either, mildly annoying at most...but now you have me wondering if it's not related. I've never had sinus problems or seasonal allergies in the past.

    Thank you everyone for always providing such interesting conversation. I rarely chime in but am always interested in what everyone here has to say.

    Though I'm not without side effects, endocrine therapy has overall been tolerable for me. I don't know if that will help anyone struggling to make treatment decisions, but my personal experience is that it hasn't been as awful as I had feared. I'm about 14 months in.

  • kksmom3
    kksmom3 Member Posts: 101

    I have decided to quit. I took letrozole for 2.6 years. The last 18 months I've struggled with sore joints which I could have lived with, but the worst, is a dry vagina, and urethra. I'm on yet another antibiotic for yet another UTI. I take and do everything recommended for UTI's, but I keep getting them, altho the frequency has been less. I have to insert moisturizer or estrogen cream every single day and night. I only use the estrogen cream as sparingly as I can. I can barely wipe myself or shower without pain. I am 3 years out, and I pray my 2.6 years was enough. I quit. Tried anastrozole too. Horrible.

  • moth
    moth Member Posts: 3,293

    just want to say that for anyone dealing with recurrent UTI there is a thread of tips. I posted some & there are more in the thread

  • Dee4564
    Dee4564 Member Posts: 2

    KKsMom, Thank you for sharing your experience with AI's. Have you considered taking your AI every other day to reduce side effects? I have seen that mentioned by several others here. Just a thought. I am switching to Aromasin afterr 4 months on Arimidex. Best wishes to you! DEE

  • rah2464
    rah2464 Member Posts: 1,192

    Beesie interesting thing you said about the fatty deposits on the legs and knees. I am noticing a distinct change as well. Good grief wish we didn't have to add the cosmetic impacts (hair skin wrinkles loss of tone) to the other. I will however keep plugging away. So looking forward to my "no pill November" ha. With my MO's approval of course.

  • Rah, sorry that you are experiencing the same thing but thanks for mentioning it. This one is not listed anywhere as a side effect of AIs but definitely can be driven by a lack of estrogen so it just seems logical to me that it's a side effect of the Letrozole, or at least that the Letrozole is exacerbating it. I've searched the board and haven't seen any mention of it before but I have the feeling that we are not the only ones experiencing this.

    I'm trying to learn to embrace my chubby knees but it's not working. At least 'shorts' season will be over soon.

  • lillyishere
    lillyishere Member Posts: 757

    Thank you for all your comments Ladies. I am glad you are mentioning SE of AI that is not on the list. These SE are often the ones that make me worry because I think it is only me. It seems that we, diagnosed with hormone-positive BC, the anti-estrogen therapy will continue for a very long time. Or as my MO says, let's cross the bridge when we come to it. Especially us gifted with ILC.

    Beesie, was your second BC the same as the first one you had in 2005? Or was it a new BC? So sorry for many questions but you are wealth of knowledge :)

  • pamep
    pamep Member Posts: 66

    Thanks for the article link to Aromatase Inhibitor–Induced Musculoskeletal Symptoms: I saw my MO yesterday for adjuvant treatment options. He favors Arimidex for my ER+ with Fosamax or Reclast to counter my progressive osteopenia. I am slender, very athletic, post-menopausal, a yoga practitioner, and already experience osteoarthritis. My bones, skin, hair, and sense of physical and mental well-being are very important to me for QOL and I do not want to take bisphosphonates or anti-depressants. So I am considering trying Tamoxifen first rather than an AI, or maybe Tamoxifen then switching to an AI if I can beef up my Dexa T-scores. My MO is fine with that if I make that decision. I am also starting a rigorous bone support strategem including more weight bearing exercise and bone strengthening supplements. A pretty good book on supplements is Your Bones by Lara Pizzomo.

  • Lilly, my second BC diagnosis was a new primary, other breast. Same ER and PR but very different presentation. The first included a breast full of DCIS with a tiny microinvasion of IDC. The calcs from the DCIS were visible on my mammogram but my ultrasound was clear (ultrasounds rarely 'see' calcifications). The second was a small IDC with no DCIS at all, which is quite unusual since about 85% of IDC diagnoses include some accompanying DCIS. My mammo was clear (a BIRADs 1! just 2 weeks before my diagnosis) but the small mass was seen on an ultrasound.

  • lillyishere
    lillyishere Member Posts: 757

    Beesie, you are PR- as I am. Is it true that this type is more aggressive?

    My friend who had a very small IDC from 2 years ago is diagnosed with recurrence and she is going for BMX. She is been on AI all these 2 years, right after the lumpectomy and radiation. Makes me nervous when I hear cases when AI doesn't work!

  • Well, AIs reduce local recurrences by approx. 50% and reduce distant recurrences by about 35%, so this means that there will be those who recur despite taking these meds. I try to focus on the amount that I am reducing my risk, taking it from a % that would make me a bit uncomfortable to a % that I can live with - as much as any of us can live with that sword always hanging over our heads.

    Yes, PR- is more aggressive. That had me really freaked out and I did a lot of reading on it. The good news is that AIs appear to be as effective on ER+/PR- as they are on ER+/PR+. And while PR- is a negative factor, it doesn't mean that some can't be indolent. But the more aggressive nature is reflected in pathological staging (different from the traditional TNM staging). If you look at the pathological staging charts, with the exception of small node-negative PR- cancers, in most other cases PR- cancers are given a higher stage as compared to the same cancer that is PR+. Here's one page from the staging manual; I've highlighted the staging of comparable ER+/PR+ vs. ER+/PR- cancers.


  • lexie2002
    lexie2002 Member Posts: 59

    Hi Bessie,

    Can I ask what wand your talking about? My hair has been thinning but the last 3 to 4 months it's coming out in handfuls and I feel so awful.


  • lexie, see my post above, written Sep 30, 2021 01:50PM.

  • lillyishere
    lillyishere Member Posts: 757

    Thank you Beesie. I mentioned the fact of PR- to my MO but he shook his head and said that it will be the same treatment. I'm not sure what to make of my MO since he is on the top of the best MO in the country but doesn't give much explanation. Have you considered using Gua sha for lipedema? Just a thought. I bought a gua sha for my face but my 14yr old daughter keeps using it. It is not that she needs it! :D

    PamEP, your link with SE of AI is amazing. I wished I had that link when I started letrozole and it would explain a lot of worries. Please post it in other places if you can. It will help other women.

    I feel this place is without a door since the one who created this thread, removed her post :)

  • ratherbesailing
    ratherbesailing Member Posts: 111

    Lexie -

    My solution to hair thinning and falling out is definitely not for everyone! And it might not work for everyone, but...

    During Covid, I stopped dying my hair. It had been thinner since menopause, and three years into letrozole it was so thin I could barely see it without a magnifying glass, and there was less of it. I had tried minoxidil, biotin, Biosil - nothing worked. I was trying to decide which would look worse - a middle-aged balding lady, or a middle-aged grey-haired lady.

    Bottom line, my hair is now grey but looks great. Full, healthy, no frizz in the summer. A good cut makes it look stylish, not old-ladyish. Almost everyone tells me it looks much better. And I get a lot more people offering to open the door and carry my packages - just have to laugh!

    I think it may be genetic. My mother - who did not have breast cancer - also had thin hair that looked fantastic after she stopped coloring it.

    As I said, may not be for everyone - or even work for everyone, but putting it out there for the brave.

  • RatherBeSailing, I'm envious. I stopped dying my hair quite a few years ago. The way that my gray grew in looked great - a lot of grey right at the front, framing my face, with salt and pepper (much more pepper than salt) around the rest of my head. Friends would look at my hair and it would make them consider going gray. But then came Letrozole, and that was the end of that. So now I have gray, thin and thinning, fly-away, frizzy hair.

    Lilly, my MO said the same thing - no difference in treatment protocol for PR-. Everything I've read supports that, although I wonder if treatment protocols just haven't caught up with the understanding of PR- cancers. When I was diagnosed the first time, which was only 6 months after my mother had been diagnosed with an ER+/PR- T1b cancer (almost identical to my second diagnosis), there was absolutely nothing in the literature about PR-. PR status was completely ignored. In the 16 years since then, we now know that some PR- cancers may be more aggressive, but treatment protocols don't do anything about it. I think over time that might change but we're not there yet.