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Topic: Has anyone quit or reduced dosage of the hormonal therapy?

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 22, 2019 03:02AM - edited Jul 22, 2019 03:03AM by sumomo

sumomo wrote:

I am considering to quit, after taking Tamoxifen for a year, Letrozole for three months, then Exemestane for a month. Side effects, especially joint pains and fatigue, get worse and worse and have come to the point to make me think if I should quit. Or, would there be any option of reducing dosage, like taking every other day?

If anyone has been through the same situation, I would appreciate any comment. Thank you!

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Jul 22, 2019 03:15AM GiddyupGirl wrote:

I haven't been through it yet I am supposed to start in September but I am very sensitive to medications. My MO is having me take Femara every other day. There are also studies that support the use of a half dose for Tamoxifen for those who get really bad side effects. Talk to your oncologist it may be an option for you.

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Jul 22, 2019 04:12AM DorothyB wrote:

I've read about a lot of people taking reduced dosage of Tamoxifen. Some MOs have said that some is better than none. My MO said he would switch me to a different aromatose inhibitor before letting me take a reduced dose of Tamoxifen.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Jul 22, 2019 04:39AM edwards750 wrote:

Dorothy - the thing is those meds are not one size fits all and oncologists disagree on what’s best a reduced dosage or a different med. The bottom line is take whatever you can handle and if the SEs are too horrific it’s time to find an alternate drug.

Many women have debilitating side effects but choose to keep on taking them because they are afraid not to or their medical team insists they have to to ward off a recurrence. We all know there are no guarantees if we do take them.

I took Tamoxifen for 5 years. Side effects were totally manageable. Joint pain and lac of concentration were the side effects I dealt with.

Diane

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Jul 22, 2019 06:16AM Salamandra wrote:

Plenty of women stop taking tamoxifen - this is known from studies that show attrition rates. I think the rate is is less than 50% make it to the targeted 5/10 years.

That can happen for a lot of reasons, and I imagine side effects and financial/insurance issues would be high on the list.

I had a terrible time with tamoxifen but I desperately want to keep taking it. I'm under 40 and it seems to me that I have so many years for my hormones to attack me again - the 10 year recurrence rates don't feel very reassuring at all.

With my doctor's advice, I went on a month holiday and when I go back will be building the dose gradually and also (I will insist) trying counter-pharmaceuticals to mitigate the worst of my side effects (fatigue).

From reading these boards, the impression I get is that the most important thing is to have an MO that you trust and who communicates well. With them, you can explore your risk profile and options (e.g., taking a lower dose that has less effects but doesn't have the medical track record of the 20mg).

I hope that in the not too distant future we will have better technology that lets us know more accurately who among us would benefit from tamoxifen and from what doses. But for now we are all playing our odds...

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jul 22, 2019 09:30AM sumomo wrote:

Thanks everyone for sharing your experiences and comments. Very helpful and I appreciate them very much. I will see what my doctor will say. I guess he will eventually suggest going back to Tamoxifen and reducing its dosage. I will see if I can somehow stick with one of AI's but not sure.

Again, thank you all.

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Jul 30, 2019 06:28AM 50artchic wrote:

I never started because I'm taking Prozac which doesn't metabolize with Tamoxifen. I realize I'm taking a risk, but couldn't go off the Prozac. I tried other SSI and I crashed. I am one year away from surgery. My oncologist says I have a high recurrence. I am premenopausal, triple positive, stage 3

lisa w.
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Jul 30, 2019 04:44PM sumomo wrote:

Hi 50artchic. Sorry that you had no option to take Tamoxifen. Without it, there are many things to do like exercise, well-balanced nutrition, etc. They should be more important than hormonal therapy. I wish you all the best.

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Jul 31, 2019 12:15PM Meow13 wrote:

I quit after 4 years on anastrozole and exemestane. It takes along time to get better. My trigger finger and dry eye stopped soon after quiting but the joint pain lingered forever. After over 3 years of being off I feel almost like my old self. I think my bones have weaken but I am ok. Never did get a straight answer on how beneficial the drugs were for me in preventing recurrence. I asked my oncologist if there was a way to tell he said "No".

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Jul 31, 2019 04:21PM Murfy wrote:

When SEs and QOL become hard to take, I'll go off EXE for about a week and then resume at half dose for a week or 2, then alternate half dose with full dose, then resume full dose. I've had to do this 4-5 times in the last 16 mos, but am currently SE free with good QOL...until next time.

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/13/2017 Mastectomy: Left Chemotherapy 1/12/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/30/2018 Aromasin (exemestane)
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Aug 1, 2019 03:49AM sumomo wrote:

Hi Meow13. Thank you for sharing your experience. Sorry to hear your joint pain lingered. Hope you get better and better.

Hi Murfy. Thank you for the information. Did your doctor recommend doing that or you decided by yourself? I asked my doctor if it's OK to take letrozole every other day, but he didn't answer clearly. He suggested Tamoxifen.

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Aug 1, 2019 07:17AM Simbobby wrote:

My Sister was diagnosed three weeks after I was but she caught hers early.

She was on Tamoxifin but it caused her horrible hot flashes. We both have the same oncologist and I am on letrozole with no side affects. So our Doc suggested she go on letrozole too but she found the side effects to be worse than Tamoxifan. So he has put her back on Tamoxin and was prescribed to take it every other day

Dx 9/15/2017, IDC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2+ Chemotherapy 10/9/2017 AC + T (Taxol) Surgery 3/29/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right Dx 4/3/2018, Right, 24/26 nodes Hormonal Therapy 4/9/2018 Femara (letrozole) Surgery 3/12/2019 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 1, 2019 01:35PM NanaJan wrote:

I took Femara a little over 4 years. The pain was so bad my quality of life was down to nothing. The bone and joint pain was unbearable. I stopped in June of 2017. I wish I could tell you all this stuff went away but it has not seemed to have gotten worse. I developed osteopenia while on the Femara. Wish I had something more encouraging to say..

Dx 2/2012, IDC, Right, 5cm, Stage IIIA, Grade 1, 4/11 nodes, ER+/PR+, HER2+
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Aug 1, 2019 03:46PM sumomo wrote:

Hi Simbobby. Sorry to hear letrozole SE was too bad to continue. I experienced the same. I will go back to Tamoxifen soon.

Hi NanaJan. I feel it's a great achievement to make 4 years. I wish I could continue like that. I was able to continue only 4 months.

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Aug 2, 2019 01:37AM lightningblue wrote:

I quit Tamoxifen after a few months. It was ruining my life to the point where I was contemplating suicide. I would rather let the cancer come back and kill me than live a hellish half-life where I'm contemplating killing myself anyway!

(Just to note: I am not harming myself or considering doing so. Those feelings went away after I stopped taking the drug, and I am not in danger.)

Diagnosed age 32 in March 2019 Surgery 4/10/2019 Mastectomy: Left, Right
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Aug 2, 2019 01:54AM Murfy wrote:

Hi Sumomo! My doc knows I reduce dose when QOL suffers and says not to do it too often. I have only studied exemestane, but the prescribed dose is high. One dose lowers estrogen for 3 days and we are taking this every day. This is to assure our estrogen levels are kept low. In my opinion, in some individuals (me, probably because I'm small), the high dose produces toxicity SEs (ie, trigger fingers, joint aches) that can be alleviated by reducing the dose. My hot flashes and insomnia let me know my estrogen is still low, but overall QOL is now much better.

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/13/2017 Mastectomy: Left Chemotherapy 1/12/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/30/2018 Aromasin (exemestane)
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Aug 2, 2019 02:01AM GiddyupGirl wrote:

My Onc is starting me on femara every other day in September (I think dosage should have something to do with body weight and estrogen level) Lots don't test for it but maybe they should.

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Aug 3, 2019 03:39AM tlgio17 wrote:

Hi, I am right there with you. I have been on Arimidex, Aromasin and Femara and just had my MO apt and she is now switching me to Tamoxifin. I have achy bones, and stiff hands with trigger finger that is bothering me at my office job. Really praying the Tamoxifin helps and has less side effects. I have started and stopped other meds many times when I couldnt take it anymore. Of course, always worrying about recurrence. I asked my MO what the percentage was to cut down and she said up to 50%....but from other's strings it seems like the MO's have varying percentages. Good luck w your journey and decision, its tough and only we survivors really understand the struggle.

Best wishes,

Traci

Dx 10/23/2016, IDC, Right, 2cm, Stage IIB, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Right Chemotherapy 1/11/2017 AC + T (Taxol) Radiation Therapy 7/31/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/1/2017 Aromasin (exemestane)
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Aug 3, 2019 07:42AM sumomo wrote:

Hi lightingblue. I'm glad you seem very well after stopping tamoxifen. Take care.

Hi Traci. Thank you for sharing your experience. It's good to know I'm not the only one who tried all AIs and went back to tamoxifen. Good luck with your journey too!

Hi Murfy and Giddyupgirl. Thank you for letting me know. I wondered if any doctor actually prescribe the lower-dose AI and it's good to know some doctors do that. As I researched, some doctors seem OK with that while some doubt. My doctor said it's not well researched yet. I found one study about Intermittent Dosing of AI (http://cancerres.aacrjournals.org/content/75/9_Supplement/P1-12-15).

The below is an excerpt from the conclusion. I can't understand what it means. Anyone, would you be able to understand?

" AI elimination half-lives in the absence of any alteration also are consistent with this dosing schedule (24, 48, and 50 hours for exemestane, letrozole, and anastrozole, respectively). In order not to impair plasma concentrations, such a schedule is preferably suggested as compared to a half-dose daily schedule"

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Aug 3, 2019 11:31AM GiddyupGirl wrote:

Ok so if you take 50mg of femara it takes 48 hours for the blood concentration to be dropped by half so by taking it every other day you maintain the same blood level without getting an increased level. Because when you take it daily on day one blood level is 50 on day two it would be 75. Hope that makes sense. Half life is how long it takes for half of the drug to be excreted from the body.

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Aug 4, 2019 04:41AM sumomo wrote:

Thanks, GiddyupGirl, for the clarification. I now understand the "femara to take 48 hours to drop by half" part, but how did you find 50mg? I couldn't find that in the source but I may miss something. If it simply means one dose (i.e. one tablet), mine is 2.5mg and I thought it's standard, but not sure..

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Aug 4, 2019 05:52AM GiddyupGirl wrote:

sumomo: sorry hon just picked the number out of my head for a math example. You are right the dose is 2.5 so when it drops by half it would be 1.25. The study found that taking 1.25 a day did not work as well as 2.5mg every other day because the initial dose was too low to be effective. Sorry about the confusion - my bad

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Aug 4, 2019 07:19AM - edited Aug 4, 2019 07:20AM by flashlight

I didn't want to go on another medication for osteoporosis so I chose tamoxifen. My osteo is worse in my hips and I was also afraid of the S/E of femur fractures from those meds. I tried the 20 mg daily and within 2 weeks I was having terrible dryness and pain issues. I had had cataract surgery in June 2018 and never had eye dryness before. Vaginal dryness was very uncomfortable. I went off the tamoxifen and read everything I could and learned so much especially from this forum. I was never in to supplements/vitamins, but now I take them regularly. I learned that fish oil is suggested for eye dryness caused from lasik eye surgery. I had never heard of K2 with Vitamin D3 for bone health and Gaba for sleep. Now I take those as well. I read the Italian study on 5mg tamoxifen. I read where one woman split the dose 10mg in the AM and 10mg in the PM. I read where a woman my age was just going to take the 10mg because of the side effects. I tried spitting the dose and did this for awhile until I couldn't. I took 10mg for one month and just started adding another 10mg to give me the 20mg dose. I still split the dose. I did this on my own without asking the doctor or NP. Sometimes I don't think they really know what to say or can't because of hospital policies.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Aug 4, 2019 07:59AM cassiecanada wrote:

Hi flashlight

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Aug 4, 2019 08:03AM cassiecanada wrote:

Oops- accidentally sent- will start over! Hi flashlight- that is exactly why i didnt take femara because of side effects from the bone drug alongside femara side effects- doin’ ok on 20 mg of tamoxifin a day but it seems everyone in my age bracket ( 60’s)- has had hysterectomy or prophylactic ovary removal- i havent had either and wonder why my MO never suggested it- did yours suggest it?( then again- you may be pre menopausal so it would be different?
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Aug 4, 2019 08:42AM - edited Aug 4, 2019 08:46AM by keepthefaith

I took Tamoxifen for 2.6 yrs. I did read a study that says you still get a benefit and only a slight increase, over 9-10 yrs, in recurrence rate of like 1.5-2% vs. 5 yrs. I informed my MO and did not ask permission. She seemed fine with it. I had a hysterectomy and oopherectomy(sp?) when I was 50 yrs old. 9 yrs prior to BC Dx. Probably contributed to my osteoporosis. We all have to make our own decisions. Good luck!

Dx 9/17/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/18/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 12/3/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/26/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/16/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 2/11/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/1/2014 Breast Hormonal Therapy 5/23/2014
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Aug 4, 2019 11:19AM sumomo wrote:

Hi GiddyupGirl. Thank you again for your explanation. I now completely understood and am interested in taking letrozole every other day. I've already come back to tamoxifen and I will continue for some months. After that I will review with my doctor again. May I ask you how you find letrozole later, maybe in three months or so? Are you taking it every other day from the start or reducing from everyday? Thanks.

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Aug 4, 2019 11:40AM DorothyB wrote:

Welcome flashlight. I'm the one who just started taking tamoxifen a few days ago. I took 10 mg the first two nights. Today I took 10 mg in the morning and 10 mg tonight. I'm going to take 20 mg a few days to help get up what is in my system built up, but will then continue the 10 mg for a while.

Did your pain issues from the tamoxifen go away when you weren't taking as much?

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Aug 4, 2019 06:13PM Daylightdancer666 wrote:

As mentioned in a another topic I was out on chemo based tablet called. Precliobib I can't spell. Sorry and I got horrific sore lips. And the oncologist last. Month was it July took it off. Me and she was considering reducing my. Dose then went to see her in August and I had bad end of july with radiotherapy effects they didn't put me back on it not start bone injection she stated she wants. Me have well. Month and have.my calcium increased. Xxx

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Aug 4, 2019 11:10PM flashlight wrote:

Hi Cassiecanada , No I have never had that surgery either. I will say I haven't been diligent about going for the GYN exam after 63. When I brought it up to the NP she wasn't encouraging that I go. So I did anyway. It seems if you have always had fibroids you still have them at 68!! I had the vaginal Ultrasound and my lining had thickened and because of the fibroid they couldn't do a good biopsy of my lining. I'm going in for a D&C later this month. I'm hoping this will put this fear to rest. The doctors aren't big on doing a hysterectomy without cause. I learned that by 68 your ovaries have shrunk. They don't feel that is an issue. Having cancer has been a learning and frustrating experience!! Thank you for your note......

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Aug 4, 2019 11:22PM flashlight wrote:

Hi DorothyB, Thank you for your note. I am new to this and not sure how it works yet! Yes, my pain was not as severe with the 10mg dose. I still had the hot flashes and the fatigue wasn't as bad. I haven't been on the 20mg for very long. The pain is tolerable on most days. I just feel so tired all the time. I do think it helped to start at a lower dose so my body could get used to it. Many medications with side effects are gradually increased and I don't understand why more doctors don't suggest this. I did call in for a request for the 10mg tablet so I wouldn't have to split the 20mg. A little thing but it has helped.
Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left

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