Need encouragement - anyone tolerating hormone therapy well??

Suladog

Claire,

Thanks. I've been in chemo pause for 25 yrs with no ill effects. The first time I was TN , I was in my 30's and after a short adjustment everything was fine. No libido problems , even during chemo back in 1990 I never had any hormone therapy or HRT just Fosamax . This time around I'm triple positive , and basically it's been the same. I finished chemo 6 wks ago, still on herceptin til next January and just started arimidex. So far everything seems to be the same. My mo says since I've been running on so little hormones for so long she doesn't think there'll be much change for me. So far it seems so

shelleym1

Bump

grammakathy

I had problems with SEs on Arimidex and stopped after 7 months. My MO started me on Tamoxifex three months later. I've had no problems at all for the past nine months. I am relieved that I can take something that might help avoid a recurrence. I also lost the weight that I had slowly been adding in the forty years since our sons were born. I walk 7500 steps a day and cut out all sweets and desserts. Slowly but surely fifty pounds came off. It was doable for me - fear was a great motivator

SpecialK

I just wanted to point out that every generic is formulated with a slightly different combination of dyes, fillers and the delivery system for the drug, be it Femara (letrozole), Arimidex (anastrazole), Aromasin (exemestane), or Tamoxifen.  Each of these different formulas can cause differing side effects even though they are the same drug.  If you start on one of these drugs, and have side effects that prompt you to consider discontinuing, I would suggest asking your pharmacy to give you another manufacturer of the same drug so that you can see if you improve.  It took some experimentation with two different makers of Femara, and a one-year stint on another maker of Arimidex, before I found the right situation for myself.  I have been on the same manufacturer of generic Femara for 18 months - so far, so good.  I am looking to continue beyond five years (I am at four continuous years now) so I am hopeful that this remains the case.  I also found that changing my diet to a non-inflammatory type, which has resulted in less joint pain, easier weight management, and slightly fewer hot flashes.  I had been surgically menopausal for nine years prior to breast cancer diagnosis, and had very frequent hot flashes that were unchanged by either chemo or aromatase inhibitor drugs. 

windingshores

When you think about it, it makeIs sense that the first days or weeks on any hormonal treatment would be the worst, because hormone levels are changing. For me, things leveled off after maybe 3 weeks. Hot flashes mostly subsided, joint pains okay now too. Very encouraged. I may have written above (I forget) but I got onto Femara by taking 1/4 for 4 days, 1/2 for 4 days, then full dose. Check with your doctor though!

shelleym1

I'm going to try this tapering method.

CassieCat

I've been on Tamoxifen for about two months now and haven't noticed any new SEs. I was already in chemopause before and having hot flashes, and nothing seems to be much different now.

hyphencollins

I've been on Tamoxifen for almost 3 months now and have had only hot flashes and some ringing in my ears (which may not even be the Tamoxifen, who knows). Maybe irritability a bit, too, although maybe I'm just blaming the Tamoxifen for my crabby demeanor! I've found it easy to tolerate these things and in any event these possible side effects have weakened over the last couple of weeks too. My MO said side effects typically peak around week 6 or 8 and then fade. I'm in chemopause, was definitely premenopausal before chemo. I'm not doing any ovary suppression.

angiem45

thanks for all the info  great to hear some postive news.  I have had 1 lupron shot so far,  just finished radiation and meet with dr monday to find out what my medication will be but i believe it will be an AI .  Had a nice little surprise baby 2 years ago at the age of 42 so definitely not menopausal so will be doing the lupron shots.  I was so ecstatic over not having to have chemo I hadnt given much thought to the hormone therapy but have heard some things that have made me pretty nervous.  Thanks for starting this topic

NCDi

Finished 33 Rads yesterday, dreading anti hormonals. Am post menopausal. I am looking for positives on Arimidex vs Aromasin.

Have to say Radiation was much easier than I expected

muska

Hi NCDI, what does your MO want you to start taking? You can always try a different AI if the first recommendation does not work for you.

I started anastrozole (generic for Arimidex) before rads, continued through rads and have been taking it for over a year post-rads. No major side effects.

50sgirl

Hi NCDI, I started on Arimidex just a few weeks ago. I am not having any problems so far, and hopefully, it will stay that way. Until you try it, it is hard to say how your body will react since everyone is a bit different. Good luck and let us know how you are doing.

Lynn

Suladog

I've been on Arimidex now for 3 mos no problems so far

Spookiesmom

I've been on arimadex about 2 years. The first few weeks were pretty awful, then leveled out to tolerable. As Special K mentioned, the manufacturer of the drug sometimes makes a HUGE difference. It did for me. I request the TEVA brand, Walgreens gets it for me. My life is a lot better with this.

windingshores

Still doing well (started in April) as long as I take a 30 minute walk each day. This forum had me scared but I also know a couple of women with no side effects at all: I fall somewhere in between but more toward the no side effects side of the spectrum I suppose. Hope that helps.

shelleym1

it's been about two months now on Tamoxifen. I don't have any major side effects other than more prominent PMS the week before my period. It levels off and goes away after a few days. I've been having some stomach discomfort the last few days but I am hoping it's a coincidence. No hot flashes yet. I hope I never get any. My muscles do get a little sore sometimes but feel better once I get moving.

tessu

Thank you for this thread. I'm still in the middle of chemo but will get either AIs or Tamoxifen with Herceptin sometime late January. Got terrified reading threads here about the SEs for all those drugs.

One of you posted above how these forums can give a skewed picture: more people with bad SEs post because they are seeking help, and those who have no problems on the drugs don't post, so newbies (like me) get the impression that everybody has awful problems.

So thank you everybody who's posted about tolerating those drugs just fine. I want to be one of you.

Hopefully my bumping this will save another newbie from getting scared like I did

Suladog

tessu,

I've been on Arimidex now for 6 months and so far so good. I have not had any issues. I was really freaked out about starting Arimidex after I'd read so much from so many about bad stuff, including my own sister in law who told me how she hated it. Anyway, from what I gather some people have issues, but a lot don't. I had some ladies here tell me I'd likely be ok, and so far I have been. So, I just dropped in to add my voice to those who have been ok. Hang in there

Maggs09

I've been on Tamoxifen since Dec 2012. At beginning I had some pretty heavy moodiness lol and hot flashes, but they mellowed within the first 2-3 months; my bones are doing great on tamoxifen (tamoxifen actually acts protective towards bones in comparison to AIs, according to my onc and research). I had a total hysterectomy last year and the plan was to switch to AIs, but at the end decided to continue with tamoxifen and leave AIs for later.

Mags

Anonymous

Ditto others. I've been on Arimidex (anastrozole) since Feb 2009 so almost 7 years. Minimal SE's that went away either with help - one cortisone shot for trigger thumb; wrapped wrist and fingers 24/7 for a few weeks for carpal tunnel - and the others must have been so minor because I don't even remember what they were. It is correct that our friends come to rant, complain, etc. because these threads are so supportive and we are here to listen, so those are the stories most prevalent. The rest of us who post do so to kind of level the field and let newbies know that it just is not necessarily the same things they will experience and there are options to choose from but you have to try first.

Hopeful82014

I've been on letrozole (Femara) for 13 months with only minimal and transient side effects. My hair is drier and I had some really dark moods early on but those are insignificant compared to Femara's effect on my tumor. No complaints from me.

sbelizabeth

I've been on letrozole (Femara) for 3 1/2 years. I'll probably be on it at least 10 years, probably more.

My side effects are mostly stiff, sore joints. If I'm sitting for long periods I have to move sloooowwwly to "unbend." Staying aerobically active makes all the difference, though. I work in an office full-time, but I almost always take a brisk 30 minute walk each day, and I ride my bike a lot. I've heard Yoga is helpful, too--I just need to find the time to get into it!

For ME, the side effects are negligible. I can deal with it. I'm thrilled to have another weapon to use against the invader.

ChiSandy

Also helps to understand the different mechanisms by which the various drugs “starve” ER+ tumor cells of estrogen. Lupron suppresses the function of the ovaries, so they don’t make estrogen. Lupron doesn’t destroy ovaries (the way removing them does)--so many women who finish taking it while still of premenopausal age gradually have their ovaries return to normal function until the age at which their natural menopause occurs. Tamoxifen (and to some extent, raloxifene--aka Evista, used primarily to strengthen bones) uses an enzymatic pathway to bind to the estrogen receptors, blocking them so that estrogen can’t get to the tumor cells. Many premenopausal women on Tamoxifen still menstruate (but should avoid pregnancy because the drug is dangerous to the fetus). Aromatase inhibitors, used primarily in postmenopausal women whose ovaries no longer work (and for whom the boat has sailed on fertility), keep an enzyme called aromatase from working. In women whose ovaries no longer make estrogen, some estrogen is still made by the adrenal glands and fat cells--these glands and cells produce a hormone called androstenedione (yup, the same stuff Mark McGwyre and Sammy Sosa lawfully (!) took during their epic home run rivalries). Aromatase converts androstenedione into estrogen. AIs, whether Arimidex, Aromasin or Femara, inhibit the action of aromatase and therefore put the brakes on estrogen production.

AIs dramatically lower the amount of estrogen--so their SEs resemble increased versions of the symptoms of menopause (hot flashes) and post-menopause (arthritis, fatigue, bone loss, slower metabolism, hyperlipidemia, increased blood glucose in those susceptible to prediabetes or Type 2 diabetes). Tamoxifen doesn’t reduce estrogen, but just keeps it from getting to the tumor cells. Its side effects tend to include an increased tendency for blood to clot (dangerous in postmenopausal women, who are more susceptible to cardiovascular disease) and a rare but increased chance of uterine cancer. However, it does strengthen bone (though not as well as raloxifene, which was developed to do so) and doesn’t always cause weight gain. AIs also seem to more effectively “starve” ER+ tumor cells in postmenopausal women than does Tamoxifen.

But it’s important to note that not all women get all or even most of the various side effects--to some extent, when it comes to a particular side effect, most don’t.

Cubbie2015

Tessu, one of my cousins is taking an AI, and her SE are similar to sbelizabeth's - some stiffness after not moving for a while, but it loosens up for her quickly with some movement. I think you are right, people generally don't come online to post how well they are tolerating their medication. My cousin is too busy playing golf!

Hopeful82014

I will second sbelizabeth's comment about physical activity. I work out just about every day, whether it's a long walk, an hour on the stationary bike, low-impact aerobics, strength-training or yoga and I'm sure that helps. Since yoga's the only thing I've added since dx I have no comparison for the AI experience before or after physical activity. It certainly helps my frame of mind, keeps me strong and limber and helps me avoid lectures about the need to work out.

muska

Bumping this up for new members.

amylsp

I've been on Tamoxifen since 5/15 and tolerating it well. Main SE's are hot flashes (although they started with chemopause on 11/14 and have gotten a little better since then), dry skin, dry eyes and difficulty losing weight. I'm on a low carb diet with moderate exercise 3 to 4 days a week. I am losing weight, just much slower than I normally used to under similar conditions. Right now, I'm averaging a 1 lb loss a month. That part can be really frustrating!

jojo9999

I have been on tamox for just over one year. tolerating it fairly well. SE come and go, mostly just some hot flashes now. wondering if MO will switch me over to an AI soon or leave well enough alone and stay on tamox.

Annette47

Coming up on 3 years on Tamoxifen in a few months. Only noticeable side effect has been hot flashes, which lately have been getting more intense (up until a month or two ago they were very mild and fairly infrequent). As I said to my oncologist though yesterday, both the hot flashes and some weight gain may or may not be attributable to the Tamoxifen as several of my same-age friends (I am 48) have the same issues and aren’t taking Tamoxifen!

Cowgirl13

I've been on Arimidex for 6 years now and no problems. I did have a lot of problems at first and didn't think I could do it. Things got much better when I cut our all sugar--big difference.