Fall 2018 starting Hormone Therapy
Comments
-
Hi HikingLady: I live in Portland, Oregon too. My oncologist has a large practice and a nurse navigator that handles all questions about side effects of meds too. She is so sweet, she calls me every week or two to see how I am doing and they try so hard to find something to help with the side effects. So excited to hear how you do on Anastrosole. I was on Anastrozole for about 7 months but went off due to severe leg joint & muscle pain. I was 69 years old when I started the AI and felt like I was 90. My side effects didn't really start to get bad until about 5 months in. I went off Anastrozole for a month, all side effects went away within 2 weeks. I started on Letrozole, but only tolerated it for 2 months, severe knee pain, poor sleep, waking up with knee pain in the middle of the night. I have been off Letrozole for 5 weeks but still bad knee pain, so I am having cortisone shots in both knees this Wednesday. I don't know what I will do as far as the AI's. My oncologist wants me to try exemestane. Like you , it will cut my risk in half, from 20% to 8%. If the Exemestane doesn't work for me, I might give Anastrosole another try. I sure hope the cortisone shots help so I can get back to golfing & Pickleball, sounds like all your exercise is maybe the key to keeping the side effects under control. I am so glad I live in a big city with excellent cancer care. Good luck to you and keep posting, it is sure encouraging me to give it another try.
-
Hi Goldfish4884--sorry you've had such a rough time with your AI treatment. I hope you move forward with comfort and treatment that works for you without pain, ugh! Thanks for sharing all that. The more I know, the more I can deal with what comes up
-
Hi NVDobie
Thanks for the heads up on this topic. I look forward to a day with no side effects, but until then it will be helpful to see how everyone is managing. Joint pain, hot flashes and fatigue are the top three for me on Tamoxifen. I did have blood work done and my MO found that I had a Vitamin D deficiency. I had 6 weekly megadoses and now I'm taking 1000iu a day. Still am fatigued, but hopefully will continue to get some of my stamina back.
Beginning to look into acupuncture. Has anyone tried this for hot flashes?
-
Hikinglady
Havent noticed much of change on taste buds on my end. No longer have the waves of cravings like I used to, i assume it is because no more estrogen. Also with you on the stiff joints, I have always had some joint pain over the years, so I am adapting to the new normal but i am upping my exercise in hope to help minimizing the joint stiffness. I do find it is less painful when i am constantly moving around, but feel stiff after sitting for a while.
Goldfish
Sorry to hear about all the SE you went thru. Hope they are settling down.
GBT1lady
Welcome to the thread. I was also low (very low) on Vitamin D, so I took 3000/day for 2 weeks, now taking 2000/day. But I also live in raining Vancouver. I first texted last Dec, recently went back to check again, it has climb back up to a normal range.
I have been using exercise to combat Tamoxifen SE, was told it is one of best things we could do. Since I am not working at the moment, so I am going to Gym class nearby every other day to keep me on track. I live in a mature /senior oriented community so the classes were mild and challenging at the same time for someone like me who is still recovering.
Good to see you are looking into acupuncture, let us know how it goes. As for experience, I have treated patients with hot flash using acupuncture. Depending how much you are concerned about developing lymphedema, you may want them to avoid the arm that has nodes taken out. They should be able to use points elsewhere to achieve the same effect.
-
So I had my first acupuncture session. It was relaxing, but I cannot say whether it is helping with my hot flashes and fatigue. I go back on Monday and hopefully over the weekend I'l notice some improvement.
-
It has been a full two months with Anastrozole and my SE are the same, really still joints and issues with my BMs.
How is everyone else doing?
-
NotVeryBrave thanks for reminding the forum that Tamoxifen is for pre and post menopausal women. It selectively acts to block oestrogen attaching itself to certain cells. It is specifically designed to arrest ER BC cell growth.
I have been on Tamoxifen for 3 months. I dreaded the moment I had to start because of all the horror stories I had read. Tamoxifen has not been this horror for me.
I took heed from experienced BC survivors and take the pill before bed. I drink a large watermelon and blueberry juice at the same time. Staying hydrated is critical. I also ensure I drink throughout the night. I get up more frequently at night but that is related to hydration. I sleep well, I get night sweats, which isn't dissimilar to sleeping in the summer and I became post-menopausal during radiotherapy so, I was always due the hot flashes, I get occasional headaches, which I always got with my menstrual cycle. I am not always hungry (as I used to be with my menstrual cycle). I have lost weight. I have always exercised lots so, this hasn't been difficult but at the same time there is a significant relationship between certain side effects and no exercise so, I am even more motivated to exercise.
I am a bit slower in the mornings, which is quite new to me as I used to bolt out of bed and leap into action. I am finding the leisurely start to the day more civilised so, I am a bit grateful there as I needed to slow down for my health.
Oestrogen levels vary from hour to hour and day to day. This is likely why side-effects can sometimes be light and other times heavy. If our body is blocking more activity we are likely to feel that more through side effects.
Tamoxifen and clots - this is no higher risk than the contraceptive pill. Also, it is a higher risk for those who may be classified as suffering from obesity and or who do not exercise.
Side effects - menstruation and menopause have their own repertoire of side-effects ... hormone blockers may give us side-effects we may have already become accustomed to; or would complain about as they naturally arose through changes in the menstrual cycle and the menopause.
The research is clear, for those who are metabolising Tamoxifen or AIs effectively our relative survivorship is increased.
Please remember that the discovery of hormone blocking therapy is what changed survivor rates for women with BC. We have had 20 years of improved medicine and survivorship.
-
PhoenixCruiser: I have the same. Anastrozole now for almost 2 months. Some loose stools. Significant joint stiffness when I sit in one place for awhile. When I stand up and start trying to walk, I look like a 100-year-old, although I'm 61. Then, once I'm up and moving, I'm okay. I'm the most comfortable when I take NSAIDS and also get daily exercise. Mild and occasional hot flashes, some disruption of sleep, but not a ton worse than my sleep was previously.
Currently, I'm 4 days from my "swap" (implant) surgery on January 2, so I am taking zero NSAIDS pre-surgery. Also, I'm recovering from a small foot surgery (two weeks ago) to remove hardware (a screw that was backing out) from a fused joint from a foot (midfoot fusion) surgery in February 2018. Therefore, I can't get in the pool, and can't walk (I'm in a surgical boot for three weeks)---both activities are not okay as my bone heals from the screw removal, plus the incision also has to heal. ARRRGGG.
Anyway, once I've recovered from my implant surgery on January 2, I'll get back in the pool daily and will resume regular exercise and walking, and I'm sure that my joints will be happier....
-
Hi, ladies
I am now about 4 months on Tamoxifen. I take it in the morning to minimize its impact on my sleep. Some days I feel the stiffness of joints are getting better, not sure it is because my body has adapted or I just moved around more on those days. \
the small joints like Fingers especially thumb or toes still hurts, sometimes hurting bad when I first wake up. Not sure it was from Tamoxifen tho, could be from Chemo.
Started to feel it is part of routine and not thinking too much about it.
Hope everyone have a great new year!
-
Hi Hikinglady: Just want to wish you the best with your upcoming surgery and sorry to hear you are in a boot for a few more weeks, that will slow you down,ha. So good luck with the healing and let me know how it goes. Sounds like you are doing OK on the anastrozole. I started exemastane 3 days ago, keeping my fingers crossed. Will be thinking of you on Wednesday. Mary
-
Hiking lady
All the best for your upcoming surgery in a few days. Keep us posted
-
Hello all, happy new year!
I've been doing acupuncture for pain and hot flashes, and it seems to have helped a lot with hot flashes. Also avoiding alcohol, I can feel the hot flash come on with just a few sips. I have strong pain in various joints -- I joke that it's like I was visited by someone with a baseball bat in the middle of the night, and they smash a different joint every night to surprise me when I wake up -- however all on my right side, where I had my mastectomy and also have had various other injuries through life that have been reactivated. Acupuncture seems to be helping a bit, mostly with the overall aching more than any specific spot, but also walking loosens things up, like all of you if I sit too long I feel it when I get up. I've had 4 sessions so far and will probably do at least a few more. I'm 42 and definitely feel like my body has aged decades through my year of BC treatment, and hormone therapy is not helping. I've been getting Lupron injections for 3 months and on Anastrozole for a few weeks, so I'm hoping the SEs will diminish. I'm tired a lot but I think that is from radiation which I finished a few weeks ago. I am already having far fewer mood swings then when I first started hormone therapy, which is great!
-
I started anastrozole every other day in November, and then daily December 1st. I do notice I'm stiffer sometimes and I think I'm a bit more headachy but it hasn't been as bad as I'd feared. I take it midday (with Vitamin D and Biotin) and am happy to report it hasn't interfered with my sleep--that was my biggest worry. I've also read about thinning hair, but as of now (about 22 weeks PFC), my hair is driving me a little crazy so I guess that's a good thing. I'm just home from vacation so will probably take a day or two off of the gym but will get going back to that by the weekend. Here's to a happy, healthy 2019 for everyone!!
-
HikingGirl, good luck with your surgery and thanks for letting me know that I'm not alone with the side affects.
-
Hi All,
I was diagnosed 10/15 had surgery 12/11 and am do,to start RADS AROUND 1/21. My MO gave me tamoxifen which I haven’t started yet. My RO says some people wait until after Rads so they don’t have a bunch of se all at once. My MO basically wrote me a script told me there were no side effects and left the room. I was planning on calling tomorrow to see if I an wait to start it, but wasn’t wondering if anyone had input about starting them together or doing one thing at a time
-
HPFULL, I started anastrazole in mid-September and rads in early October. My MO and RO were both fine with this plan. Side effects of rads and hormone therapy are both well established, and rads is for a set period of time. I was ready to get on with things! I did have side effects from both. Luckily, they weren’t severe or unmanageable. Good luck with whatever you decide!
-
I didn't start the AI until a month after I was finished with rads. I think it's more typical to wait until after rads to start the hormone therapy.
-
Hello, HPFULL
In 2003 I had both, but my MO had me start Tamoxifen a couple of weeks after radiation was finished. Being on both at the same time wouldn't have been a problem for me. Tamoxifen gave me dry vaginal tissue, managed with Estradiol cream, but that wasn't exacerbated by radiation. Radiation eventually made me super tired; I think starting Tamoxifen during radiation would be okay. But, it's disappointing that your MO didn't take more time to talk all this through.
I wonder if you could phone up your MO's office to ask for guidance, and to discuss this. At my MO's office there's a team of triage RN's and an NP and an oncology-trained PA, and when I call with medication questions, one of them will chat on the phone with me if it's not quite worth a doctor's visit, or they'll convey my question to MO and call me back with clarification.
-
Hi, HPFULL
Was your ER & PR score very high? did you do chemo? do you still have your period?
My MO advised to wait for 10 days after Rads before starting Tamoxifen. I think one of the main reason to do it separately was to distinguish the side effects between Rads and Tamoxifen since they are from two different category oncologists. Radiation oncologist is responsible for your SE from Rads, MO is responsible for everything else almost.
It is not an significant issue, really depends on the preferences of the MO. Even in Vancouver where I am, different MO has different approaches.
My suggestion is to start if you still having your period, and wait after rads if you dont have your period anymore.
Chemo shut down my period. I started Tamoxifen 10 days after rads. Many were advised to take at nights by pharmacists, I take in the morning to minimize its impact on my sleep.
-
Thank You NVDobie, HikingLady, and Greenharbor
I left a message with the PA to check. I did not have chemo, my ER was 100% and PR between 41-50% I do still get my period. I actually am having it right now. Yes I am upset that I had to wait and hour and then be rushed out of the MO's office. He is supposedly the "best", but he went off of other doctors notes and when I first saw him he had not read my surgery pathology just my biopsy pathology which turned out to be very different from the initial biopsy so I had to correct him when he was going over my results. I know he's busy, but.... Thanks so much for your input so grateful for the women on this site -
HPFULL
Another note is to find ways to manage the relationship with your MO if you dont intend to change MO. they are with us for the long haul, so the best is to feel you can trust them, medically speaking.
I know it is difficult to face an unemphatic MO and we all hope they have some level of understandings of what we go thru. I have a "interesting" MO myself, supposed to be very good, but not the easiest person to talk to.Since I figure his capability is more important than his manners, i find ways to cope with his approach. for example, His team not always good with me asking questions, so I learned to print my list so its easy to read and fast to communicate.
-
HPFULL
I started Lupron injections (ovarian supression) in mid-October, started rads in early November. The original plan was to start on an AI a week after my first Lupron injection, but my body revolted and I had an estrogen surge, my first period since mid-chemo, then a brutal estrogen drop after the second shot and I felt just awful, ended up with nausea and headaches so bad I got sent for a brain MRI (thankfully fine), and finally in late December about a week after rads being over was told to start the AI. The postponement was to see if we could sort out other side effects before adding anything else into the mix. I was feeling really nervous about delaying it since I am 99% ER and 99% PR, and I already had a recurrence right after chemo and before starting hormone therapy, but my MO was not so concerned and said often people wait until after rads. All of that is to say I think if the timing mattered that much I'd have been a clear candidate to start earlier, so seems like you could go either way.
I've been doing my best to follow my MO's advice on moving more, water exercise, stretching type exercise, and I do think the joint pain is easing up as a result, or I'm just "adjusting" like they say we will.
Has anyone tried any supplements to help with the libido disappearance? I've read a bit about Maca and possibly ginseng. I might give one a try.
Also, I didn't get any risk percentages when I started hormone therapy. The last risk percentages I saw were on my Oncotype test when we discussed chemo. I was thinking about asking my MO about that, I'd love to hear from others who were given percentages on how it reduced their risk -- at what point and based on what information? -
2002chickadee my onco results show 4% reoccurrence with hormone therapy. I didn't see where it showed percentages without hormone therapy so I asked the MO, and he said 10% without hormone therapy...not sure where he got this from, next time I will ask
-
Hormone therapy is supposed to reduce risk by 40 to 50%.
-
hmmmm @ marymc86I wonder why my MO said 10%? Geez I wish he would elaborate.
-
HPFULL: That sounds like what I was told, for sure. If your risk of recurrence is 10% without AI, then cutting it by half puts it down to 5%, and 4% is even better, yay! I have no idea whether AI/Tamoxifen therapy for ER+ tumors reduces everyone's risk of recurrence by 50%. That is what my MO told me was true for my treatment and outcome statistics.
When he quotes a statistical likelihood to me, my MO usually is referring to NCCN guidelines, which draw on a huge amount of (credible, verifiable) research to give outcome percentages and to guide treatment protocols.
-
Maybe just rounded up.
-
The Oncotype test is based on results from people who used Tamoxifen. If I read correctly, you are taking an AI?
If so, maybe that is why your MO gave you better results. I have heard that AIs work better than Tamoxifen.
-
I did have an Oncotype test once, but it has nothing to do with decisions about hormone medications like Tamoxifen and AI's. It's a proprietary test that helps predict whether chemo will be effective, and is ordered by oncologists under certain circumstances, when the decision about whether to treat with chemotherapy isn't otherwise clear-cut.
AI's are usually given to (ER+) post-menopausal women, and Tamoxifen is given to (ER+) pre-menopausal women. Tamoxifen works mostly by reducing ovary-produced estrogen, whereas AI's reduce estrogen production at the cell level, is how it was explained to me by an oncology PA. ER+ post-menopausal women who don't tolerate an AI can be treated almost as effectively by Tamoxifen. I was told that my recurrence rate if I take an AI is a 50% reduction in risk of recurrence, and it's 40% reduction if I take Tamoxifen.
-
https://ww5.komen.org/BreastCancer/OncotypeDX.html
https://www.breastcancer.org/research-news/oncotype-score-0-to-10-can-skip-chemo
2002chickadee
My MO order the oncotype prior to chemo. There was never a question whether I will have hormone therapy given the ER + and PR+ status of my BC.
My score was 27, which means I will have roughly 4 -5% improvement on reducing recurrence with chemo. I went ahead with chemo.
My understanding of the test is it evaluate the chance for recurrence based on our genes, and assess the needs and benefit between tamoxifen alone and tamoxifen plus chemo.
Not sure about whether it is the same for post menopausal who are on AI. But regardless the decision, I thought it is good to know my recurrence risk.
If you google oncotype score under image, you will find see sample reports with graphs.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team