Spring 2018 Starting Hormone Blockers
I recently finished radiation and will be starting on Tamoxifen soon. Not thrilled about possible side effects especially hot flashes. Never had them through menopause or really any symptoms first time through. I'm too afraid to take the other type of hormone blockers due to having severe osteoporosis already.
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Veeder14, I'm about where you are. I started Anastrazole (it's not bad but it has its side effects too) about a month ago but it looks like we are changing to Tamoxifen. My doc said there are no bone loss issues and it's close enough in efficacy to the Aromatase Inhibitors. I am osteopenic but very close to osteoporosis. I don't want to take any osteoporosis drugs. I'm 58, and I run, weight lift, practice yoga, so I was surprised my bones weren't good. I hope you'll do fine on tamoxifen, even with the hot flashes. (They do have some medications that help with those I think.)
Anyone else out there who is post menopausal on Tamoxifen?
Hugs all.
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Hi ohioproud,
I'll be interested to hear whether you have side effects once you start Tamoxifen. I'm not starting until the end of June.
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Hi Veeder,Thanks for starting this thread.We will probably see others from the radiation thread ,too. I see the MO tomorrow so I will post after that . At the first visit pre-radiation, he mentioned anastrazole so I will ask all my questions then.
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Hi everyone,
I am 47 and I started with Tamoxifen for 4 months, which didn't help shrink my tumor. So I had my ovaries removed so I could go on Anastrozole. Which worked very well, my tumor went from 9cm down to 6cm in under 2 months. I was fully prepared to have my ovaries out even if the Tamoxifen worked because the side effects are worse in my opinion than the aromatase inhibitors. Most of the aromatase inhibitors mimic the symptoms of menopause, even the bone loss. The way I look at it is I can take supplements to help combat the bone loss but it's hard to deal with the Tamoxifen side effects like uterine cancer, blood clots, cataracts or strokes. I'll admit hot flashes suck but it's better than the cancer coming back.
I know everyone reacts to meds differently but I've had a good experience with Anasetrozole so far. I started taking Calcium and D3 as soon as I went on the pills. My primary doctor keeps an eye on my levels every couple months to make sure I'm on track.
Good luck everyone.
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Hi everyone, I finished radiation on April 5 th and started my tomoxifen in April 6 th. So far I haven’t notice any Major SE. I take mine 1st thing in the morning. I have noticed that I do seem to be more fatigue after work, when i go exercise compared to the weekend
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Veeder - perfect!
Hello ladies - I just finished 21 rads today and am on to Medical Oncology for hormone therapy in two weeks. I belonged to the February Surgery group and March Radiation. I feel like I bonded with my breast cancer sisters in both groups, feel grateful to share this journey, feel supported. I'm looking forward to continuing that support with all of you who are going on to HT.
I am post-menopausal, so will be looking at the anastrozol-type AIs.
Peace and love
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Here are some links from our March rads thread that pertain to some of our questions about hormon therapy. Actually, just copied the whole post. Hope this is a good start to understanding and answering questions.... :
Nancy - thank you for the link to the comparison chart. This helps. Everyone should take a look: http://www.breastcancer.org/treatment/hormonal/com...
Beaver - Beesie sent a link to a medscape article that did not work and was re tamoxifen rather than anastrozole-type AIs. But I did search her key words and found this report on the evidence of anastrozole working: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC55646...
Here is the publication that link came from, can anyone translate it for us?
: https://www.ncbi.nlm.nih.gov/pubmed/28415634Another link Beesie sent me is below - but the first one opens to a Medscape portal that requires an account. Her comment is in italics below. The second link that should be a pdf won't open for me. It looks like it is in Mexico?
RCT: Menopause Symptoms Mistaken for Tamoxifen Side Effects
This is the most significant study done on Tamox and women with DCIS. It's not specific to post-menopausal women, but on page 6, you can see the side effects, with a side by side comparison of those who took a placebo vs. those who took Tamoxifen (I don't think the link works but try googling those words; you want the PDF of the full report):
metoo and marigold - thank you for sharing your hormone therapy experience.
The side effects of each AI (for both post and peri-menopausal) are listed in the chart in the link Nancy sent (above). None of these SEs are fun, but certainly some of them seem to have fewer than others. I do not know what makes a MO prescribe one over the other for us post-menopausal ladies.
I do not have an appt with an MO until May 2, so will arm myself with some of the questions we are beginning to ask here. Besides side effects, I also need to know what my insurance company will cover IN WRITING since they've changed their minds on covering the lab they sent me to for genetics testing. (The joy of an appeal....)
My last boost is tomorrow. Yeah!!! I saw a social worker at the hospital today (thanks for the suggestion Feline), who was appalled at some of the red tape that's going on - she took a copy of my notes. I had to start noting times and dates of phone calls and appointments and what people said back in January because it was so much, and so contradictory at times. She will use this to help train the departments - so perhaps things will be better for others in the future. I hope so.
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Quick hello,
Had my surgery in February, began taking anastrozole on March 1, and finished radiation last Friday.
Looking forward to hearing about everyone's experiences with hormone therapy.
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Vedder: I will be starting tamoxifen May 17 upon completion of 33 radiation treatments. I am 53 and not completely into menopause, I'm already having hot flashes, night sweats, menopausal induced eczema, loss of menstrual cycles for extended months at a time. Hoping all goes well for everyone
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Great to see everyone here providing support, asking questions and providing information. I'll be checking out the informational links.
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Hi everyone,
I saw the MO today and as I expected , got an RX for anastrazole. He said the main side effects he sees in his patients are the hot flashes and joint pain. We discussed osteoporosis risk as I have mild osteopenia so I will just continue the 2000U D3 and 2 Tums a day. I have started eating more calcium rich foods like yogurt and cottage cheese. I follow up in 2 months and do a bone density in August . I will see the NP next time, and I am finding out that the PAs, NPs and RNs who work with the Docs are full of helpful info.
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flowergal, good to know, thanks. I will take this to consult with me. Sounds same as me
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Happy to see so many of the March RADs ladies here. Looking forward to continuing our journey together. Have a wonderful weekend everyone!
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My MO appointment got moved up from May2 to today - so back at the hospital now - 22nd consecutive business day..... I am armed with questions about post-menopausal hormone therapy. Have my osteopenia report and vitamin supplements with me. My blood pressure was just taken - up a bit 130/68 - which is high for me. Anxiety.
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Hi Everybody! Thank you for starting this thread Veeder. I'm so glad we're all together again, and I'm looking forward to meeting anyone new to this thread.
Yesterday I finished rads, and this morning I took my first Anastrazole pill.
I bought Tums for the calcium it contains, and Tumeric with Curcumin because I read it blocks estrogen and relieves joint pain by reducing inflamation. I'm also staying stocked up on Claritin for bone pain, vitamin B6 & B3 & K2 & D3 for bone strength. I've been on Effexor (slow release) since dx. It works very well for me. I also take 400 mg Magnesium, and an rx for a diuretic that spares potassium. Time will tell if all of this helps. I'm looking forward to hearing about how all of you do during this portion of our "journey".
I've been reluctant to start an AI because of the SEs I've read about, but some are lucky enough to breeze through it. I worry about bone loss because I'm post menopausal. Any tips and tricks would be much appreciated. Also, what are you ladies doing to boost your immune system?
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Your welcome Meg101,
I'll be talking with all of you and seeing how things go with everyone until I start in late June.
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Hi Everyone,
I had atypically ductal hyperplasia which I had removed on March 16. No cancer was found. My doctors are suggesting Tamoxifen as a preventative treatment. So my question has anyone taken Tamoxifen as a preventive, if so could you share your experience. There is a lot of information out there, ut I haven't seen any on Tamoxifen as a preventative for someone who has not been diagnosed with cancer.
Thank you.
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It's Arimidex for me. I'll start today. I feel both relieved to be doing everything I can, and terrified of the potential side effects.
I take a multivitamin (Trader Joes women's 50+ multivitamin), and a calcium/magnesium/vitamin D supplement. Altogether the MO said that was exactly how much D I should be taking (1400, I think, don't have the bottles here).
We went over my osteopenia diagnosis from a bone density scan in November - it is a small amount and another scan will be done in 2 years. I will see th MO again in 2 months unless I have SEs.
Meg asks about immune boosting. Nothing too scientific for me - I'm watchful in general about the food/fuel I put in my body. Unintentionally over the years, I probably seem to have become weird about food. Quinoa, steel cut oats, plain Greek yogurt, carrot juice, chickpea/lemon soup, etc are daily staples. I am not a vegetarian, but these provide good protein and carbs - good fuel. For fat, I choose a spicy Sicilian olive oil, avocados, eggs. I also eat cheese (ok, 4 cheese) pizza - I just put handfuls of arugula on top when it comes out of the oven. That is to say, I have good habits, but do not deprive myself.
I recently began buying local unfiltered honey to mix with the yogurt.
I walk a few miles three times a week, then do 100 of a some kind of core strength exercise, then stretch. It only takes an hour out of my day and makes me feel good.
For years I've tried to mindfully cultivate peace and calm into my life - it's a habit that takes time, but is worthwhile when it actually becomes a habit. It is especially helpful in these circumstances, when stress is inevitable. So yeah, no amount of cultivation really prepares for breast cancer, but I like to think being able to get back to calm quickly is helping me stay healthier than I might have been otherwise.
I really hope my habits will help my body cope with Arimidex, that SEs will be few and far between. I did not burn from rads, even though hypofractionated (higher dosage), and healed quickly between lumpectomies. I do not know what, if any, part my diet/habits had in this.
Love to hear what others are doing..
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Kaywrite - Your food choices sound similar to mine. I started adding raw cauliflour, broccoli, and apple to arugula salads. I read that those items are good for women with ER+ breast cancer. BTW, thank you for posting info and links in your earlier post. It's very helpful.
Nancy - I, too, have noticed that the side effects which are attributed to hormonal therapy seem to mimic menopause symptoms. Maybe that's why premenopausal females who experience such overwhelming side effects are assuming it's all caused by Tamoxifin.
Billb - Are you still doing OK on Tamoxifin?
I'm on day 2 of Anastrazole. Still no SEs. I've heard exercise is a key to holding back SEs, so I need to up my game in that regard. I'm still embarrassed to spend time outdoors due to my bald head, but I need to get over that. Either that or take walks at midnight while the neighbors are asleep ;-))
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Meg, you're welcome! I picked up my scrip yesterday and it is also anastrazole.
Speaking of Anastrazole - my prescription was $899.99 (do they think the penny will trick us into not thinking it is $900?). Granted, this is for 90 days, so it's only $300 a month. <smh> I reached my out of pocket max in January, but holy moley. The pharmacist mentioned something about coupons, so assuming these exist. Anyone know?
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Hi Kaywrite.
I pay out of pocket for all meds and my 30 pills of anastrazole was $15.00 ! I think you need to explore that cost of $300!!!! .Is that for the Brand? Also , the web site GoodRX.com is the one I use for discounts on my meds .The prices they quote with the discount card you print out are pretty close to what my pharmacy charges . Also, shop around because there can be huge differences in pricing. I use the Kroger pharmacy but Walmart is also less than walgreens or other big chains. Also, it might be cheaper to buy some meds. out of pocket as opposed to what insurance charges .
I've only had 3 doses of the anastrazole but noticed no side effects but it might be too early to know.
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Meg101
Still doing fine on the tamoxifen, My hot flashes are few, but the same as when I started chemo. I have some soreness after exercising, but that could be for any reason (age lol).
I wasn’t in menopause b4 all this (age 51) so I’m not sure of ll the SE it causes. I had a choice of taking the lupron shots with the tamoxifen, but couldn’t find any extra benefit to doing this.
My skin has almost healed from radiation, just a little peeling on my back left. I have been going to PT once a week for the last 3 weeks and it has helped my range of motion and inflammation from radiation. Would definitely recommend it!
Not sure on the pricing for my medication, I went to Kroger and had a $0 pay on it. I have seen in other post about different brands, hoping it doesn’t get switched up.
Meg, when was your last chemo? Mine was in December, and my hair has been slowly coming back. I have a little pixie cut going on right now. I decided when I went back to work at the end of February that I wasn’t going to wear a hat/wig, that i was done with it. I do get odd looks sometimes, but that’s ok 👍. I’m just happy to get some back!
It sounds like everyone is doing ok so far... hoping all goes well!
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I just finished writing a long response to everyone and it disappeared when I tried to submit it so this will be an abbreviated version of the one that disappeared.
Billb - My last chemo was the beginning of February. I have about a 1/2 inch of hair growth all over my head, but not enough to feel comfortable in public. My hair started growing back while I was on Taxotere, but it fell out again when I started AC. I didn't lose my eye brows or lashes until I started AC. I still consider myself bald because I still look like a boy with a crew-cut. I'm glad you're doing well on Tamoxafin. Here's to having good luck with hormone blockers.
Kaywrite - $300 for a 90 day supply of Anastrazole? That sounds way too high. Maybe the pharmacy made a mistake. BTW, the manufacturer for my Anastrazole rx is Breckinridge. I've heard prices and SEs can vary per manufacturer. I would be willing to pay a bit more for fewer SEs, but not $300. I paid about $50 for a 90 day supply.
Flowergirl - I agree, Kaywrite might want to check GoodRX.com. They have excellent discounts. Anastrazole is the generic for Arimidex. It's similar to Aromasin, but it doesn't contain the steroids. I loved steroids during chemo, but they made me hungry and moody so I'm OK with eliminating steroids for long term hormonal treatment.
Nancy - Are you still feeling good with Tamoxafin? A few years ago a friend of mine was on Tamoxafin and did well. She didn't have any aches or pains, and her hair didn't thin at all.
Metoo - Good to see you. Keep us posted about your progress.
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Ladies, hello!
I'll be joining your ranks in two days, starting on Tamoxifen as soon as rads are over tomorrow. I have a four-month supply waiting for me in my nightstand. $0 copay. Kaywrite, why is yours so expensive, do you know? Mine is the generic version, I believe the manufacturer is Actavis, which may contribute to its low price. I'll report back on my experience with it as I progress. I have heard that the generic manufacturer can affect the SEs so let's compare notes on that as well.
Full disclosure, I'm premenopausal, age 48, and my oncologist is hoping that I go into real menopause soon and can transition to the AIs. Not sure why, but it sounds like she prefers the AIs to Tamox.
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All - I read somewhere that you should always ask at the pharmacist what the cheapest way to fill a prescription is and whether it is cheaper not using your insurance. Sadly apparently this can be the case. The pharmacy benefit managers coordinate contracts for costs and sometimes they are willing to accept a higher cost on a lower used prescription in order to get a lower cost on a more common one and it changes by group.
Kaywrite - I agree, that sounds really high. When I researched Letrozole I thought it was going to be around $700 a month and then when I filled my prescription (which is a generic) I paid $5 for a one month supply - this is while I am still paying 20%. I will soon hit my out of pocket max.
Still very manageable side effects for me - most of my hot flashes are at night. I sleep with the ceiling fan on - it started on low, went to med and sometimes I have to kick it up to high. It helps.
I am working on healthier eating habits. I was extremely health a few years ago and then let things slide a bit and gained about 20lbs over the past 3 years - no doubt a contributing factor to my diagnosis. So as the weather improves and my treatment ends I will be making my health a much bigger focus in my life!
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Hi everyone, Hope everyone had a good weekend.
Kaywrite, $300 a month! That's crazy! I would see if you can get it cheaper via a mail program or talk to your doctor about that cost. I found this link for you, hopefully it helps. https://www.drugs.com/price-guide/arimidex
Meg101, I've been off of the Tamoxifen since October, it was not working on my tumor. When I was taking it I really didn't have any side effects from it. I had my ovaries taken out so I could be put on Anastrozole and it worked very well. My tumor shrunk about 3 cm in two months. The only side effects from the Anastrozole is hot flashes and a little fatigue.
Lots of pain this weekend from the burns in the armpit. My husband told me to take one ibuprofen and one Tylenol and it actually helped along with my aloe plant and calendula cream. 5 more to go after today!
Hope everyone has a good day!
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Hi everyone - thank you for your feedback re the ridiculous price tag on the pharmacy bag when I picked up the anastrozol. My co-pay was $0 since I reached my out of pocket max in January - just wanted to make that clear. But I did ask them how much this would cost when I started a new medical year next January. They pointed to the cost on the pharmacy bag they'd given me: $899.99. I couldn't believe it. I've been going to the same pharmacy for 25 years (although it's changed names) and the pharmacist told me not to even worry about it until next year - another person behind the counter mentioned something about coupons. LOL
With all of your responses, I looked online at my BCBS insurance account today and it LOOKS like the price I would pay for a 30-day prescription is $4. So wth with the inflated price on the bag? Anyway, much ado about nothing it seems.
Regardless, I appreciate your suggestions and will keep them in the event they are needed. Hope it helps anyone else facing this kind of ridiculous and greedy price tag.
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Glad you got the price sorted out Kaywrite,.
Someone mentioned nutrition and foods to eat and I'll pass along the title of a book my sister( ,who goes to a Cancer support group) sent me .She heard one of the authors speak and thought I might find it helpful. Some of the reccomendations are a little far out for me or very expensive, like eating only organic foods,but it does have lots of good info on how foods impact our bodily systems.It is "The Whole Food Guide for Breast Cancer Survivors " by Edward Bauman and Helayne Waldman. I will need to read it more than once as a reference. A lot of it is similar to the meditteranean diet -lots of fruit and veggies, more fish, less red meat and less cabs. I've already started to implement a few changes in my diet . I will do all I can to keep this disease away!
Hope you all have a good week.
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Katchan,
I have Atypical Ductal Hyperplasia on my right side and had a lumpectomy April 2017. Due to my risk numbers being low enough my breast surgeon gave me the option of starting Tamoxifen. I chose not to since my treatment plan was to monitor by MRI in 6 months and then another mammogram 6 months after that. When I went for my 6 month MRI they found Atypical Lobular Hyperplasia in my left breast. So Nov 2017 I had another lumpectomy. At this time my breast surgeon said that she thought it was important for me to start Tamoxifen. I started taking it in Jan 2018 and I didnt have any side effects the first 2 months. Then in March I did not have my period, started gaining weight, hot flashes, night sweats and exhausted after work. In April still no period but I started taking Magnesium and Tumeric and it has really helped with the hot flashes and night sweats. I am not as tired but still find it hard to find motivation to get up and get moving.
I go tomorrow for my 6 mth mammogram and follow up with the breast surgeon. I am praying they do not find anything this time.
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