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Has anyone quit or reduced dosage of the hormonal therapy?

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Comments

  • lillyishere
    lillyishere Member Posts: 786

    Choco, seems very reasonable to me. I am much younger than you and I was recommended for lumpectomy with radiation but for the same reasons as you, I decided on BMX and I am very happy with my decision. I have a close friend who did chose a lumpectomy and she is terrified anytime she is scheduled to scan the remaining of her breast. We are all different how to prevent future anxieties.

  • whatjusthappened
    whatjusthappened Member Posts: 178

    CHOCO1818, good luck going forward with whatever you decide to do. It sounds like you're leaning towards the MX, so hopefully your BS and MO will both support you in your decision.

  • HeyLady
    HeyLady Member Posts: 1

    to CHOCO1818. I had a preventative bilateral mastectomy with breast reconstruction 2 and half years. ago. During surgery a Stage 1 Grade 2 lump was found in one breast. I had no chemo, no radiation. I have all my lymph nodes. My onco type score is 12. My oncologist wants me to take anti-hormonal drugs for 5 years as she says I could get cancer elsewhere in my body. I'm 72 years old. I do take Anastrozole for 4 days per week and skip 3 days. My bone density score indicates osteopenia and I have eye vision issues - on wait list for Vitrectomy eye surgery. I do believe my vision problems are related to taking the drugs and also the decreased bone density score. Having a bilateral mastectomy will eliminate your chance of getting breast cancer but not cancer elsewhere in the body. It is still referred to as matastized breast cancer even if it is bone cancer. I prefer Anastrozole over Letrozole. My plan is to stop taking Anastrozole by my 3rd anniversary. If I had to start again I would not have had the bilateral mastectomy.


  • Aster43
    Aster43 Member Posts: 3

    Diagnosis Stage 1A Invasive Ductal Carcinoma, rt. breast; Gr 2, 1cm, ERpos, PRneg, HER2 new neg. Lumpectomy 10/22; 16 days of whole breast RAD.

    I was drawn to this thread because I'm trying to make a decision about taking Tamoxifen. I've tried 3 AI's quitting after 10-14 days because of heart issues (high bp's and irregular heart beat). My MO said she's not seen this in 20 years of practice but it says it right here on this site under info on side effects. My MO says my body can't handle having less estrogen. Has anyone else experienced this?

    So I see many women have been taking Tamoxifen for years and tolerating the side effects. I'm concerned about the blood clots so not sure if I'll take them. I also see that some have varied their AI dosages. Was this on your own? My MO said it wasn’t an option.

    I asked what my risk was by not taking AI's or Tamoxifen and she couldn't give me an answer. My Oncotype Recurrence score was 20, at 9 years with AI's it was 6%. I don't think that is even an issue since I'm 75. Figuring this stuff out is so hard

  • rah2464
    rah2464 Member Posts: 1,192

    Aster43 maybe speak with your MO about doing a lower dose of Tamoxifen? Unfortunately no one knows the optimum prescribing dose, the 20 mg per day is just the maximum tolerated dose during trials. I know there are some small trials underway for lower dosing. Hope you can take it and tolerate it with no issues. For sure if I were you I would want to ramp up on my dosing and not jump in with 20 mg at the outset daily.

  • flashlight
    flashlight Member Posts: 311

    Hi Aster43, I'm going to be 70 in May and have been on Tamoxifen for 2-years. When you stopped the AL's did your B/P and irregular hear rate resolve? Is that why you are afraid of a blood clot? I haven't had any issues with B/P so far. When I first started on it I had a rapid heart rate, but that has resolved. It might because I now take magnesium. I started out taking the 20mg daily and couldn't tolerate it so I decreased my dose to 10mg and slowly increased to 20mg by splitting my dose. I take 10mg in the AM and 10mg in the PM. That works for me. I now have the okay from my MO, but not in the beginning. I agree, it is hard to figure what to do! Best wishes.

  • peregrinelady
    peregrinelady Member Posts: 416
    When I took Tamoxifen, I took a baby aspirin daily. After revision surgery (which was outpatient) I started the Tamoxifen again (per plastic surgeon) in 4 days. However, I didn’t include the aspirin as I still had major bruising. Big mistake. DVT/PE. Fortunately I had my ovaries out so that I could start an AI. Now I wonder if the clot would have happened if I had waited and taken the aspirin with the Tamoxifen. I was anxious to start again as I had been off so long with the surgery so I trusted the surgeon when I should have trusted my gut instinct to wait. I was in my 50’s when this happened. I think being in your 70’s carries different risk factors.
  • polkadot1
    polkadot1 Member Posts: 46

    Hi Aster43- I just wanted to jump in and say that after much trial and error, I have settled on 0.5 mg of Arimidex (half a pill). My MO has approved this dosage for me. Of course, she wanted me on the full dose but after a year of trying to increase with major side effects, she believes this is what my body can handle. She also said she felt confident in this due to recent studies supporting reduced and/ or intermittent dosing. I started out on Tamoxifen due to already having very low bone density and it was a nightmare for me that sent me to the ER and that wasn't even at full dose. I agree with Rah2464 that if you do try Tamoxifen, ramp up slowly. Just my two cents. Best of luck in whatever you decide.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    CHOCO, you said "I think I read somewhere that it's only like 1% of DCIS turns into DCISM and wouldn't you know it I am that 1%."

    Here's another way to look at it. 20% of DCIS diagnoses from core needle biopsies end up being upgraded to invasive cancer once the final pathology is in. Your diagnosis, like mine, was upgraded - well, mine went from ADH on a stereotactic biopsy to DCIS-Mi after a surgical biopsy, so I skipped the DCIS step completely. But a single 1mm microinvasion is the smallest possible invasive cancer. So for the 1% of upgrades who have a microinvasion, it's a more favourable result than the other 19% who've been upgraded.

    But to reassure anyone else reading who's had a preliminary biopsy finding of DCIS, I believe that approx. 15% of the 20% upgraded to IDC remain Stage I and usually have T1a or T1b tumors.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Aster, since you have your Oncotype score, it's easy to do backwards math to calculate what your risk would be without taking an AI or Tamoxifen.

    As I wrote in my post in this thread on February 28th, endocrine therapy (AIs or Tamox.) reduces metastatic risk by 30% - 35%. Therefore based on what you said, "Oncotype Recurrence score was 20, at 9 years with AI's it was 6%", this means your risk without the AI (or Tamoxifen) is 9%. The math on this is that 6% is a 33% reduction off 9%.


    Now in fact, since you are 75 and your tumor was only 1cm, your risk is likely lower than that. The Oncotype risk estimates associated with each score are averages. These averages are based on the average age and pathology of the patients who participated in the research study that provided Genomic Health (the Oncotype people) with their recurrence risk estimates. For those who are node negative, that would be the TAILORx study. For patients who are different than the "average" TAILORx patient, the recurrence risk might be higher or lower. Older age (and at 75 you are considerably older than the average patient in the study) confers a lower risk. Smaller tumor size (and your tumor was smaller than the 1.75cm average in the study) confers a lower recurrence risk.

    In the past, I would suggest that people ask their oncologist to run the Oncotype RSPC (Recurrence Score Pathology Clinical) Model, which was a simple and quick (2 minutes) computer model that any MO could access on her computer. This model would take the patient's Oncotype score, and adjust the recurrence risk by factoring in the patient's age, tumor size, tumor grade, and whether the patient planned to take an AI or Tamoxifen. If you do a search on this discussion board, you will find quite a few people whose MOs ran the model for them, sometimes resulting in a significantly different recurrence risk estimate.

    My new suggestion is that you ask your MO to run RSClin, which is more refined than the RSPC model, and has a successful research study behind it. This model is available on the Genomic Health site, but only to MOs, unfortunately not to patients. Read about RSClin here:

    RSClin: A new tool for 'TAILOR-ing' treatment in early breast cancer https://www.mdedge.com/hematology-oncology/article...


    "When results of the TAILORx trial were presented at ASCO 2018, many oncologists thought it seemed too simple that a single number from a genomic assay could separate patients who would and would not benefit from adjuvant postoperative chemotherapy.

    Those oncologists were right to be skeptical. Subsequent data indicated that better predictive tools were needed.

    A new tool called "RSClin" may fit the bill. RSClin integrates the prognostic and predictive value of the 21-gene Oncotype DX recurrence score (RS) with the additional prognostic information conveyed by patient age, tumor grade, and tumor size.

    RSClin provides individualized estimates of distant relapse risk for women with node-negative, endocrine sensitive, HER2/neu oncogene-negative early breast cancer – and a quantification of the additive freedom from distant relapse if that patient receives adjuvant chemotherapy. The tool is now available via a tab on the professional portal at https://online.genomichealth.com/. "


  • Aster43
    Aster43 Member Posts: 3

    Thank you to those who responded to my original post with your advice/ experience. Much appreciated.

    Beesie, thank you for explaining how to figure the risk. I did read your earlier explanation but math is not one of my strengths. I'm not sure if my MO could help, 2 appts. ago she said she couldn't quantify the risk. So she doesn't know of the resources you mentioned and I don't feel comfortable telling her. I did ask her if dosage on Tamoxifen could be adjusted and got a flat No.

    I just have a negative gut feeling on starting this medication. I definitely do not want an ER trip or worse. I'm thinking about a second opinion from another clinic that's associated with our UWA Cancer Care Alliance. It's where I wanted to go originally but got talked out of it by my surgeon who I do trust. Either that or I'm going to forget meds and go with diet, exercise, yoga, meditation and forget the stress and drama. Maybe do both

    Also, how do I respond and highlight your names in the post?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Aster, a lot of MOs want to encourage their patients to take endocrine therapy, so they won't tell the patient what their risk would be without it. But they all know the math, and I think it's shameful.

    I can understand not wanting to tell your MO about a new tool that she's not familiar with, but I believe RSClin was just released within the past month or so, and you can say that you heard about it here. It's an extremely important computer model that your MO should learn about, if she hasn't yet heard of it.

    But, if that's not available, you might want to try inputting your information into PREDICT or CancerMath. While these two computer models don't have the advantage of knowing the biology of your tumor, as reflected by the Oncotype score, they do take into consideration your age and the pathology of your cancer. My MO actually uses the PREDICT model so I know it is well accepted.

    https://breast.predict.nhs.uk/tool

    http://www.lifemath.net/cancer/breastcancer/therapy/index.php


    I wouldn't normally do this, and I would recommend that you check my work by going into the model yourself, but I was curious so I completed the PREDICT model using the information you've provided. Specifically, I input patient age of 75, ER+, HER2-, 10mm (1cm) tumor and node negative. I guessed that your cancer was found through screening, rather than it being symptomatic. And since you are PR negative and Ki-67 is often higher when the cancer is PR-, I assumed 'Positive' for Ki-67.

    Here are the results, looking at 10 year mortality rates. Being 75, by far the biggest risk you face over the next 10 years is your age. From your breast cancer diagnosis, the mortality rate over 10 years is estimated at 4% overall, reduced to 3% if you take an AI or Tamoxifen for 5 years.

    image

    image


    Of course without knowing the biology of your tumor, the PREDICT model might be under-estimating your risk. But I suspect that your Oncotype score may be over-estimating your risk, because of your older age and small tumor size. So maybe your real risk falls somewhere in between. The models are not exactly the same - Oncotype estimates 9 year metastatic risk whereas PREDICT estimates 10 year mortality but it's all just estimates, so I'd say they are close enough to look at together:

    Without taking endocrine therapy:

    • In the range of 4% (PREDICT 10 year mortality rate) to 9% (Oncotype 9 year risk of metastatic recurrence)

    .

    Taking an AI or Tamoxifen for 5 years:

    • In the range of 3% (PREDICT 10 year mortality rate) to 6% (Oncotype 9 year risk of metastatic recurrence)

    .

    So the question is whether a 4% to 9% risk is something you can live with or whether it is too high for you to be comfortable, and whether reducing this risk to 3% to 6% is worth the risks and side effects from the AIs or Tamoxifen.

    To narrow this down more (and because I'm uncomfortable speculating on your risk figures), I really think you should ask your MO to run the RSClin computer model from Genomic Health.


  • flashlight
    flashlight Member Posts: 311

    Aster43, Does your MO have a portal? Then you could ask for the test Beesie is recommending. My Mo has Nurse navigator that I can call and ask a question or request a medication. Maybe that would help? After working with doctors for over 30 years I can tell you they don't mind being asked, in a nice manner, for a test or a discussion. If they do move on.

  • cassiecanada
    cassiecanada Member Posts: 101

    Hi Aster- I check in from time to time

    Your stats are nearly identical to

    mine ( as well as age and

    treatment)-

    I started tamoxifin close to 2 years ago

    after much back and forth ( exactly

    the risk so well laid out by Beesie)-

    I have not had any side effects but still

    wonder about the unseen ones- a lurking

    clot etc- Sometimes it obssesses my thoughts

    and so i always bring it up whenever i

    go back for followups- the answer is always

    the same- doc has low tolerance should

    i choose to stop due to these thoughts-meaning

    risk/benefit is so small he wouldnt be too

    concerned- but my call- so i may go off

    it in june- but if i have no symptoms, side

    effects and feel the same as i did before

    surgery, maybe i shouldnt stop- and grab

    that extra 2-3 % ...benefit

    So i totally understand your dilemma-

    one key thing is ahistory of clots-

    do you have a history ? I thought of letrazole

    but the bone issue would be intense-

    so i chose clot fear over osteoporosis-

    like a sick game of “ would you rather”...

    snyways- i am rambling- but am interested

    in your feelings about this as they parallel

    mine but i am 2 years ahead of you-

    one question i wonder about and need to

    find an snswer to- —- is it true that the

    most benefit of tamoxifin is within first 2 years?

    also.. when one goes off tamoxifin, do the

    hidden side effects linger?

    perhaps we both may benefit from at

    least a few years and perhaps you as well

    will feel nothing while on it-


  • Aster43
    Aster43 Member Posts: 3

    Beesie, Thank you for going to all that trouble. Yes, the Ki-67 is 11%, lthough I have no idea what that means. I may call the MO Monday and ask about the RSClin computer model like you suggest, so then I’ll know.

    Before cancer, my biggest health risk was/is coronary artery disease and high blood pressure, pretty well controlled by meds, but aggravated by overweight BMI. So taking meds like the AI’s that raise my BP and cause arrhythmia is scary. Reading the sheet on Tamoxifen that the MO gave me, I see those same issues listed as side effects along with blood clots and stroke so it’s hard to say “Oh, OK, I’ll give it a try”, for a pretty small decrease in risk. At one point the RO said there was only a 1% decrease in recurrence using AI. I don’t know how she figured that.

    I think I’ve gathered from the Drs. that I have a relatively low risk of recurrence but they also said cancer is an insidious disease so that just throws it back out there. I just know that I’ve had negative experiences with other medications in the past and now the AI’s so I’m really leery about Tamoxifen for me. Living with a 4-9% risk vs a possible stroke or damaged heart valve is hard to decide. But I’m leaning towards skipping Tamoxifen.


    Cassiecanada, Thanks for your comments. We struggle so hard to make the right decision don’t we? It’s great that you’re doing well on the Tamoxifen.









  • margun
    margun Member Posts: 385

    some ladies here are already taking the medication every other day. I have to ask this question to my MO if it is really necessary to take it every day. A friend asked me that if the cancer cells are in our bodies are slipping until getting activated for some reasons, what if with antihormons we stop hormon positive cells but feed hormone negative cells. I did not have the answer and if someone has it, I would like to here. That will make us decide if taking the med every other day it is not cotions than taking every day

  • BCat40
    BCat40 Member Posts: 121

    Just wanted to report back that after my 4 day disaster on Toremifene, I decided to try Raloxifene to see if I could handle a different SERM and so far it's not bad. Some minor cramps, nothing compared to the other drug. Something was very wrong on the T...either it was interacting with one of my other meds or my body just hated it. Of course Raloxifene isn't supposed to work as well as T, but it's what I can handle for now.

  • rah2464
    rah2464 Member Posts: 1,192

    BC I am glad to hear you may have found a SERM that you can tolerate. Fingers (and toes) crossed that it continues to be ok for you.

  • jrnj
    jrnj Member Posts: 408

    I’m 5 weeks out from diep and have been off my meds for 11 weeks except for one week in January. I started my letrozole today. I was taking arimidex/anastrazole and aromasin before that. I took letrozole for one week in January. My issues were significant arm and leg pain. I’m not holding out too much hope but here we go again.

  • lillyishere
    lillyishere Member Posts: 786

    How are you doing JRNJ? Check out this link: Pain when taking hormone therapy for breast cancer

  • jrnj
    jrnj Member Posts: 408

    Thanks Lilly. So far ok, only one pill. I’m taking it every other day like the arimidex. I’ll try ramping up if I feel ok. Just a little dizzy yesterday. The aromasin impacted me immediately and got progressively worse. The arimidex was fine the first week then got progressively worse. So I won’t really know I think for a few weeks. I’m taking Celebrex so that helps too.

  • nye1980
    nye1980 Member Posts: 15

    At my most recent appointment with my oncologist, and after genetic screening that showed no mutations, I have been told that I can come off all my meds once I complete five years of treatment. That means the end of this year! He said my risk of recurrence only goes down a tiny bit if I go for two more years and not at all beyond that. I wasn't really prepared for that news and assumed I'd go ten years, but now that there is a chance I can get my period back and keep my bones strong--it feels like a miracle. I haven't decided yet, but my heart is ready to be done.

  • rah2464
    rah2464 Member Posts: 1,192

    Oh Nye what lovely, lovely news! Yay for you!!!! Thanks for sharing so we can celebrate with you.

  • margun
    margun Member Posts: 385

    it is good that their is some evaluation based on specific circumstances how long one must take the anti hormone pills because the dosage is one- size for all which I cannot understand. We all take the same dosage independent of hormone positivity rate or stage or weight. My oncologist does blood test but I think is to see the overall functionality of organs and no mesure hormone level or monitor cancer signs.

    If there is a possibility to estimate how long one should take the pills why the docs cannot estimate the proper dosage based on specific cases? I have a friend who refuses to take antihistamines. She told me that she does not want to cope with Se and what if her hormone positive cancer comes back as a hormone negative one? I do not know the answer but given that I followed my doc recommendations I am continuing to take the pills. But all those questions remain unanswered.

  • lillyishere
    lillyishere Member Posts: 786

    Congratulations nye1980! Such wonderful news!

    Margun, I asked my MO a similar question and he told me that the letrozole I am taking wipes out the estrogen. No need to check the estrogen.

  • margun
    margun Member Posts: 385

    I am on letrozole. Beside the joints bones it’s affecting my hair growth.anyone of you colour hair and what is the impact on hair growth. Mine is so thin and so fragile that I am not daring yet to do it. However, I like to cover my grays. Any advice

  • dtad
    dtad Member Posts: 771

    Margun...so sorry you are having side effects from Letrozole. There is a really good hair system called Bondi Boost that might help. Good luck.

  • jennyjo20
    jennyjo20 Member Posts: 28

    Margun,

    I cold capped during chemo and then started Lupron/AI. I've always had fine, thin hair and believe me, chemo, cold capping, and being slammed into menopause didn't help. I recently started using Pura D'or shampoo and conditioner and have started seeing a whole new round of hair regrowth. For the first time in a year I've been told that my hair looks nice! (words I never thought I'd hear again).

    The brand claims not to use any parabens, sulfates, pthalates, or other harmful chemicals, which I hope is true. My priority is of course preventing a recurrence, but I'm happy to have found a safe product that seems to be working well and allows me to feel a little less self-conscious while on endocrine therapy. I hope this is helpful.

  • margun
    margun Member Posts: 385

    thank you ladies.

  • BCat40
    BCat40 Member Posts: 121

    As an update, I made it about a month on the raloxifene with increasing aches and pains in my hands, feet and joints. The pain on the tops of my hands and feet got to the point that I made the decision to stop. Exercise did not help, in fact I had much worse muscle soreness on the drug than ever before. Spoke to MO today, he said some people just can’t tolerate hormonal therapy and to focus on exercise instead.

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