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Has anyone quit or reduced dosage of the hormonal therapy?

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  • flashlight
    flashlight Member Posts: 311
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    Margun, Did you have radiation?

  • margun
    margun Member Posts: 385
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    flashlight. I had chimo invluding Ac and taxol. Then surgery with 3 sentinel node removal. No rads.now I am taking letrozole anti hormone pills

  • sweetp6217
    sweetp6217 Member Posts: 120
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    Hello again all:

    I hope you have been doing well these days. I'm still working, but part time. As for letrozole, it's been more than 4 months since I stopped taking it. About 7 weeks ago, I finally began loosing weight, partially from resuming some outside chores. My biggest vise was Dr. Pepper which I used to chug down twice a day. I'm down to 2 cans per week and am on the way to phasing it out altogether.

    My PCP and SO are a tad concerned about it even though I gave them a big prior notice. Not only am I loosing weight (which I didn't expect), but I believe that some of my cognitive and other issues have improved; not all though. I have a 3D dual mammo coming up and full panel blood tests as well.

    Disclaimer: I alone made the final decision to stop taking my letrozole. I notified my team of doctors about the side effects, went through a battery of tests and therapy and weighed the options. Options being: switch to another medicine or go off for a short while then resume. I feel as though my health is a collaborative path that I am now on. I know that I can make that decision for myself, but not for anyone else.Some of my team believe I am making a mistake. I am aware of the risks that I am taking, so we'll see how this turns out.

    Stay safe everyone! Hugs

    SillyHeart

  • flashlight
    flashlight Member Posts: 311
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    Margun, My MO told me Tamoxifen can cause a frozen shoulder. I was having a lot of shoulder and arm discomfort. I am being seen at therapy for Breast lymphedema. The therapist said I also have cording and my chest and upper back are tight due to radiation. I would ask your MO for a physical therapy consult to see if they could help you. Letrozole might have the same side effect. If you are concerned about lymphedema you would have swelling. At first my chest felt heavy and then it was obvious. Best wishes...

  • margun
    margun Member Posts: 385
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    Flashlight. How long after the surgery you had lymphadema. I hope the physio helps you to feel better

    why sometimes it's given Tamoxifen and sometimes letrozole

  • flashlight
    flashlight Member Posts: 311
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    Hi Margun, Did you have a bone density done before you started with the letrozole? Mine showed I have osteoporosis and I didn't want to go on a bone building drug like Prolia so I decided on Tamoxifen. Tamoxifen can help bone mineral density in postmenopausal women where Letrozole can weaken it. My sister is on Letrozole and receives Zometa. The lymphedema started this past March and I wasn't diagnosed until the end of May. I finished radiation last year.

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    It's been a while since I have checked in here. I took tamoxifen for about 18 months, but I had to stop due to postmenopausal bleeding in December. (I also had other side effects from tamoxifen- mainly joint pain, fatigue, and brain fog.)

    I had a hysterectomy in late February and started Letrozole in late March. The 5 yr clock started over at that point, unfortunately!

    Everything had been going along just fine on Letrozole until about a week ago, when I started having intermittent heel pain. This morning I woke up and could not bear weight on my foot. I can limp around the house in sneakers.

    I will put a call in tomorrow but am wondering if this is normal Letrozole bone pain, or something a bit beyond?

  • Askmissa
    Askmissa Member Posts: 32
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    Salamandra - what counter-pharmaceuticals are you taking for fatigue

  • peregrinelady
    peregrinelady Member Posts: 416
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    Princess Buttercup, I am not sure why you would start your 5 years over after taking Tamoxifen for 18 months. Did your oncologist tell you that? I am definitely including my one year of Tamoxifen in my total count.
  • LJDH0709
    LJDH0709 Member Posts: 19
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    Hello edwards750/Dianne

    I just read your post and was wondering if the lack of concentration for you improved after stopping Tamoxifen ?

    I have read several articles that stated one of the side effects of Tamoxifen is "brain fog" and some memory issues.

    just wondering if that clears up once you stop the medication?


    Thank you!


    Lenore

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    PeregrineLady, yes that was what my MO told me. I think she is just taking a conservative approach to make sure that I'm covered. But I will ask at my next appointment.


  • princessbuttercup
    princessbuttercup Member Posts: 159
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    LJDH: About a month after stopping tamoxifen (and continuing up until I started Letrozole in March) I felt better and more clear-headed than I had in a long time. I think there is some residual chemo brain that will always be there, but yes it did get better. My hysterectomy improved things even more. I really wish I had done that years ago.

    I'm hoping that this bone pain (mostly in my right foot) improves after stopping Letrozole.

  • Greeneggs
    Greeneggs Member Posts: 1
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    I have been on letroole for a month. Just asked MO for a switch, which I expect will be anastrozole. Already debating just stopping hormonal therapy.

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    PeregrineLady: I just looked this up, and suspect that this may be why she is starting the clock over on Letrozole.

    https://www.cancer.gov/types/breast/research/letro...

    After a median of 8 years of follow-up from a large randomized trial, women with estrogen receptor positive breast cancer who received 5 years of treatment with the aromatase inhibitor letrozole were less likely to have their cancer recur or to die during follow-up than women who had 5 years of treatment with tamoxifen. In addition, 5 years of sequential treatment—either 2 years of letrozole followed by 3 years of tamoxifen or 2 years of tamoxifen followed by 3 years of letrozole—was not better than 5 years of letrozole alone at preventing recurrence or death. These results, from the BIG 1-98 trial, were published online October 20, 2011 in Lancet Oncology.


  • peregrinelady
    peregrinelady Member Posts: 416
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    Interesting, thanks for researching that. I am staying on the AI past 5 years anyhow because I had a high recurrence score on the BCI test, but good to know that 5 years straight on letrozole is of benefit.
  • margun
    margun Member Posts: 385
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    princesse: how long you were on letrozole when started to have joint pain. I had some since the beginning but became worse and more persistent after 8 month of taking. Plus I started to have upper arm shoulder discomfort that feels like I pulled a muscle. Based on the posts I will stay on letrozole until ( hopefully does not happen) it becomes unbearable

  • LJDH0709
    LJDH0709 Member Posts: 19
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    PrincessButtercup:


    Thank you for the encouraging words. I stopped once for one month in November per my Onc. due to horrible brain fog. ( I am 62

    and probalby dont have that much estrogen left at this point anyway LOL)... It is getting difficult again so it may be time to take a break and get some clear headedness back. Hopefully once I am off it permanently the brain fog will lift hopefully and I can get back to

    where I was before taking it, if that's possible!


    Thank you so much!

  • Wereflyn
    Wereflyn Member Posts: 27
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    Has anyone seen lab reports proving that their hormone levels are actually reduced significantly using Letrozole or the other hormone therapies? I had a bone density test the same day my cancer was seen on the ultrasound screen where I was diagnosed with osteopenia. I just got the new scan and the density has decreased by 4% from the previous results. I stupidly went on bio identical hormones which fed the dormant cancer cells. I had a large panel of hormone tests completed prior to taking the hormones and I have my “natural" post menopausal hormone levels. At that time I was told “I barely had any hormones in my body". No family history of BC and was on Bio Hormones for about 16 months.


    I really do not want to keep taking this drug and destroy my bones and later find out that It wasn't needed because I was so far into menopause that it couldn't make it any lower. BTW I have a drug interaction with Tamoxifen so that is not an option for me.

    Thanks

  • threetree
    threetree Member Posts: 1,365
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    Wereflyn - I too hate this letrozole and asked my oncologist how they know if I'm getting enough or too much, since my estrogen levels were never measured. She told me more than once that "we just don't do that". No explanation, just the it's not going to happen talk. My understanding is that not all women lose bone density on the drug, so there is hope there. If you look up the side effects for letrozole, some sites show percentages for different ones, and I seem to remember that the percentage of those who suffer bone loss is something like in the 10 or 20% range, but I could be wrong. I just know it wasn't the majority. Who knows, maybe we will be the lucky ones and not experience anymore bone loss, in spite of the drug. Best of luck to you!

  • salamandra
    salamandra Member Posts: 736
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    Hi Askmissa,

    They gave me I think provigil, which is used for narcolepsy. I tried it for a couple of weeks and it barely made a dent. It gave me maybe an extra hour or two of relative alertness. Ritalin also didn't make a difference for me (I was taking it anyway for ADHD, but otherwise they might have tried it).

    In the end I gave up on tamoxifen and I'm taking a different SERM, toremifene. Thankfully it doesn't have the fatigue side effect for me. It felt like getting my life back.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    Wereflyn - one of my big frustrations with hormonal treatment is that there does not seem to be monitoring. When I ask, it seems like it is not part of the standard of care and none of the people in the Medical field seems to find it necessary. If ER+, supressing it seems to be part of the standard, never mind the SEs. No information if any background estrogen is "ok". I was already menopausal when Tamoxifen prescribed in 2009. Oncologist had more confidence in it than the newer AIs, thought it has already proven itself. SEs seemed minimal at the time, but I do wonder about about any lingering SEs. I am now taking Arimidex and am very concerned about affects on bone health. Oncologist said the Arimidex and Ibrance I'm taking will probably be forever.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Tamoxifen 5 years, took magnesium to help with cramping in calf muscles.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Started with generic Anastrozole,stopped due immediate joint pain, stiffness, locking up in hands. After a couple of months, started tamoxifen again.

    6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. More scans, biopsy, found tumor in R-axilla. Pet scan showed no metastatis. 9/2019, start Ibrance and Arimidex, stop Tamoxifen. Tumor has shrunk from 2.5 cm to 7 mm (April 2020). Hoping August scan shows more shrinkage.

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    Margun- I started Letrozole in March and felt fine for three months. At the end of that first three months I had a video appointment with my MO, and I kept saying how great I felt. The tamoxifen was out of my system by then, and the hysterectomy helped a lot. My MO just nodded and said let's meet again in October. I think she knew that I wasn't really feeling the effects yet.

    My biggest issue so far is the bone pain. Some days I wake up and can barely walk. Other days are ok.

    I keep coming back in my mind to how much better life is after the hysterectomy. No more bleeding or pain, and fewer migraines. I wish I had insisted on it years ago, but my doctors all kept saying that holding onto those organs was better for my health. I think not!

  • margun
    margun Member Posts: 385
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    princesse- i started letrozole later than you, October 2019 and I feel already an increased pain and stiffness in my foot and hand. My right arm feels like I pulled muscle but I am not sure if it is not due to node removal. My hope that these problems do not get worse because I cannot much rely on my husband to do the chores. I have no menstruations anymore so hysterectomy is not needed I guess to prevent something.is still letrozole more manageable than Tamoxifen?

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    Hi Margun,

    My timetable was that I took tamoxifen for 18 months until I developed post-menopausal bleeding that was pretty much constant, starting in December 2019. I was taken off of tamoxifen then, because it can cause a thickening of the uterine lining and bleeding is one symptom of that.

    Then, as I needed to be put on something else for an anti-hormonal, it was clear that I needed to have my ovaries removed. I could not stay on tamoxifen, and I could not start letrozole and keep my ovaries since they were not completely post-menopausal as we had originally thought.

    So, I had the hysterectomy (including ovaries, tubes, and uterus), then started letrozole a few weeks after things had settled down. I feel *much* better having those unneeded organs out of the way, and wish I had done that years ago, actually. They have been nothing but trouble for years.

    Anyway the jury is still out for me with letrozole. Lately I have been hobbling around with foot pain, although my MO says it has nothing to do with the letrozole. It will keep me from getting any exercise, for sure, so I'm not sure if the benefit of the drug is worth it if I'm unable to exercise. I also have some burning pain in an elbow and wrist pain in both hands.

    But tamoxifen was just awful for me. I had a terrible quality of life on that drug! Everything hurt.

  • peregrinelady
    peregrinelady Member Posts: 416
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    Princess buttercup, it is so funny that you mention burning pain in the elbow. I just switched from Anastrozole to letrozole and I literally just looked at my elbow in the mirror because it stings like I have been stung by a bee, but I do not see any sign of that. It did not occur to me that it could be a side effect. Hopefully it (and your pain) go away soon.
  • lillyishere
    lillyishere Member Posts: 773
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    Elbow pain from letrozole? I am joining your club! Only my right elbow and wrist. In beginning I thought I hurted somewhere but later on I realized it has nothing to do with anything else but letrozole.

  • peregrinelady
    peregrinelady Member Posts: 416
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    Lilly, I forgot about all the random aches and pains I had at the beginning with Anastrozole. Interesting how they are in different places with letrozole. The good news is that the side effects usually lessen as time goes on. Or we just get used to them. 😀
  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    Peregrine and Princess - SEs and AIs, no fun . Have you talked to oncologist about other AIs? I started Ibrance and Arimidex with the 3rd round of BC in Sept 2019. Some stiffness in hands and locking finger on left, thinning hair. It is not stopping me from being active. Maybe it would with racket sports or rock climbing since gripping might be a problem. Not due for a bone scan for a while, am scared o;f AI effects on bones. When Oncologist suggested surgery, I said no for the time being since the Ibrance is shrinking the tumor. Shrunk from 2.5 cm to 7mm. Hoping tomorrow scan shows more shrinkage. Really afraid that surgery R-axilla will damage nerves, tendons, and make the lymphedema a lot worse. My cancer has been ER+, but I keep wondering if there is a "safe' level of backgound estrogen

  • Ileepak
    Ileepak Member Posts: 21
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    Hi Ladies,

    I stopped taking tamoxifin last September after being on it for 5 months. I was already having hot flashes so they didn't bother me . . . I didn't care if I gained a little weight . . . I was still going to work out and be as healthy as I could . . . but then I started having terrible constipation and terrible leg pain at night that would wake me out of a dead sleep . . . etc. etc. all the other little side effects as well . . . I couldn't sleep at night . . . . just felt like crap . . . then my hair started falling out in droves . . . . not one had any answers for me of when/if it would stop and whether it would grow back . . . . that was the last straw . . . . I couldn't continue working and try to function on it. Overall, I just felt horrible mentally and physically. My oncologist said that I was one of the lucky ones that got all the bad side effects. My oncologist suggested that I half the dosage but I just couldn't go back to it . . . my feelings is that even on half the dosage, I am still going to have these side effects. So I have made the decision to not take it and live my life feeling good for as long as God gives me.

    As someone said . . . the struggle is real for all of us . . . and ultimately the decision is ours.

    God bless all,

    Eileen "ileepak"

  • margun
    margun Member Posts: 385
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    Lleepak . There are other anti hormonales that could replace Tamoxifen? I guess the letrozole is given to post-menopausal ladies only but is there alternative to tamoxifen??