Need encouragement - anyone tolerating hormone therapy well??

Wren44 · January 2016

I've been on Arimidex for 4 years without problems. Worst side effect is being cold a lot of the time. No hot flashes for me.

Anonymous · January 2016

Hi all, I just finished my first year of tamoxifen (premenopausal when I started). I am doing much better at the one-year mark than I was in my first few months, so hopefully I can provide some encouragement to those just starting out.

My first 6 -8 months were somewhat rough, but not like the horror stories on some of the other threads. I experienced many of the common SEs, the most persistent being fatigue and frequent hot flashes. Other SEs came and went.

I do still get hot flashes, but not as many and not as intense. My energy level is still not great, but I attribute that more to the whole experience (surgery, radiation, etc.) than the tamoxifen alone. One important point for me was recognizing certain "triggers" that made me feel worse and learning to manage them. For example, I had to really get work-related stress under control. And as much as I enjoy the occasional glass of wine or holiday sweets, alcohol and sugar definitely make me feel lousy and so I minimize them.

All things considered, I really feel pretty good and am out living my life and doing all the "normal stuff", including work, exercise, travel, hobbies, etc. I know I have four more years of tamoxifen to go, but it doesn't worry me like it used to. Hope this helps...good luck and good wishes to all.

Jumpship · January 2016

My two helpers are curcumin and acupuncture. Never did needles before. I'm amazed at how 4 treatments has helped my aching joints (thanks Tamixifen) and trigger thumb

Optimist52 · January 2016

I'm on letrozole aka Femara and am finding it okayish. My hands, ankles and knees are a little achey sometimes but not too bad at all. I noticed that my hair has been falling out a bit and my nails are weaker than they used to be. Hot flashes as well of course. I find these tolerable, a lot of women have them much worse than me. Overall the side effects have been not as bad as I feared. Side effects are often very individual because we are all unique. I wish you the best on this treatment.

ChiSandy · January 2016

I started letrozole (Roxane version) New Year's Eve. Because--except for a weekly cheat-meal--I've been keeping sugar & starch to a minimum and eating mostly fish, poultry & eggs for my protein, and trying to walk or at least climb stairs a lot--I've lost 2 lbs. since then. I expect if I lose 1/2 lb./week (or don't gain) I'll be okay. Noticing some startup pain in R. hip in the morning or getting up after sitting for awhile, but no stiffness or soreness in other joints. At night, depending on sleep position, I might be awakened by hip aches necessitating I roll over; and woke up this morning with a slightly sore back after my kitty anchored my legs for a couple of hrs. while I slept on my back so I couldn't elevate my knees. But I had those symptoms to some extent even before starting AI therapy.

My skin's a bit drier--LE therapist told me to start moisturizing my arms & breasts, and I have a derm. appt. in Feb. (originally made to check on my sebo-psoriasis which started a couple of days into therapy but is gone now), mostly to address a couple of moles & a psoriasis patch on my arm but now to get facial skincare advice. And though I'm sweatier overnight than before, I've yet to experience a genuine hot flash. (Never had 'em during menopause). Haven't noticed more hair in the shower drain or on my brush or comb after shampooing--have a decent amount of volume when I do my own hair, but it does feel fine & limp after getting it professionally straightened with keratin treatments. (Need to get it done again, but since I'd have to keep my hair dry and not pinned up or in a hat for four days, that's not happening till spring when I can run the A/C at night and get a few sunny days in a row. Also rocking those fashionably salt & pepper roots for now).

Unfortunately, I'm finding it a tad tougher to control my BP lately--might have to switch ARBs or add another drug to the arsenal. And I've yet to get a lipid panel drawn; I might have both a statin and Metformin (statins raise blood glucose, on which cancer cells can feed) added to my pharmacopeia. I already have three shot glasses on my counter every day: one each for night & morning meds and a third for my gummy-vites. Before starting rads I had a DEXA-scan which revealed osteopenia; MO wants to discuss Fosamax, but PCP says my GERD is already too bad to risk it, and wants me to just keep up the calcium citrate, D3, mag., and weightbearing exercise. A third doc whom my shrink recommended (who took his wife from osteoporosis to nearly-normal), Dr. Murray Favus (aka the “Bone Whisperer" from U. of C.) says “doing nothing is not an option" and suggests semiannual Prolia shots. We shall see.

But all in all, letrozole is treating me fairly kindly.

jcfree · January 2016

Started Anastrozole August 2015 after my masectomy. The SE's are tolerable for me. Return of hot flashes and get itching on my hands, arms and legs during a rough hot flash, very annoying! Have not experienced any stiffness or pain in bones or joints but I attribute that to exercising every day, either on my glider or exercise bike and do daily stretching too. Have noticed my skin is very dry since starting the AI, so have to drink lots of water and use lotion daily.

Anonymous · January 2016

I have been on Arimidex for 8 years. I had some SEs but nothing bad. Keep moving and keep your Vitamin D levels up.

Anonymous · January 2016

ChiSandy, I love your posts. Thanks for the great info. Glad you mentioned Calcium Citrate. I started taking it instead of Calcium Carbonate and my indigestion is so much better.

KBeee · January 2016

I had a lot of problems of Tamoxifen, felt pretty rotten, and had almost constant nausea. I recurred after 14 months. After chemo, I am now on Femera and have no problems with it.

canderson333 · February 2016

I started Tamoxifen 12/1/15 and have had only one side effect...hot flashes. During the day, in the winter time, they are manageable. At night has been hard sleeping with night sweats. My onc wants me to take Effexor which is an anti depresant known to help with hot flashes...ugg another drug. I might just try and deal with it the thought of taking more drugs...just don't want to! I'm 43 years old and was not showing signs of menopause until after chemo.

Good Luck!

muska · April 2016

Bump

morelandks · April 2016

I echo the thanks for starting and keeping up this positive thread - I, too, was freaked out by the posts from our sister gals who are struggling with endocrine therapy. I am truly glad that they post and that there is an open, supportive forum for processing the negative stuff when it comes, but for us newbies, it's SOOOO IMPORTANT to have context as we are navigating our own way through the BC mess!

I started Lupron plus Aromasin a week ago, and actually felt better last week than any week since my dianosis a year ago (go figure!). I have had an increase in frequency of mild, very brief hot flashes, but that's it for the standard SEs on an AI - otherwise, my sleeping has been much better and my energy is actually up a couple of notches! I don't think these better QOL conditions are caused by the AI- my point is that I am still recovering overall (finished chemo in Jan and rads in March) and the AI is not interfering.

I have had a new bout with neuropathy following the Lupron injection, which is very rarely associated with Lupron - my MO and I are still trying to figure this one out (I had pretty intense neuropathy from my chemo (Taxol), so perhaps I am disposed to this somehow).

I know it's early days - it can take a few weeks for the AI to have full effect - but I am so encouraged, and am happy to have a place to share that!

Be encouraged my AI friends!!!

grandma3X · April 2016

I started letrozole about 6 weeks ago - so far so good!

Carocass · April 2016

I just finished all of my treatments. 4 Herceptin/Perjeta; 4 red devil 18 Herceptin and 36 radiation! It took 20 months. I have gained 18 pounds from the Herceptin, which I can't wait to lose!!! I started Tamoxifen and it turned my liver into fatty liver disease and 6 inches larger! Stopped that drug immediately! Told my oncologist, I am so sorry, but we're done here! She respectfully agreed. I told her I would not be taking anymore cancer therapy drugs! The side effects are not worth the risk for me! Peace Out and stay strong Cancer Warrior!!

dtad · April 2016

Im not taking anti hormone treatment but I would like to say that I think this is a really important thread to keep going. Everyone says only those who have se post. So lets hear from all of you that are tolerating it well. Its important that we hear from both sides. Good luck to all....

MsPharoah · April 2016

Just wanted to chime in to say that I am tolerating Letrozole. Taking faithfully for 2 1/2 years and am doing fine. Side effects vary for each individual. What I think is important is to have an oncologist who acknowledges that there can be side effects and helps you with them. If you have an oncologist who looks at you like you have two heads, run!!! I have great stiffness when I get up from a seated or lying position and especially when I get out of the car. But it goes away after a few steps and is tolerable. I have my bone density checked every 2 years and so far, so good. I exercise and try to maintain optimum weight. While I think it is a good idea to have a thread that is encouraging, I found the threads that contained stories of difficulty to be helpful too. On those threads, I learned that taking the medication morning versus night or vice-versa could be helpful and that if you are taking a statin, don't take it at the same time you take the anti-hormonal. Both of these suggestions were helpful to me.
Love and hugs, MsP

doxie · April 2016

I am starting my 5th year on AIs, 3.5 on Aromasin. My bone density has edged down a bit, but I'm still in the mid-osteopenia range and getting no meds for this. All SEs are manageable and from someone almost 60, not surprising for my age and may have nothing to do with Aromasin. If I'm at the higher end of a healthy BMI, it is only my fault I'm not in the middle or lower. I weigh what I eat and drink.

I had troubles early on with SEs, the worst was trigger thumb requiring surgery and very dry eye. It's interesting how those issues can resolve and in time you can feel normal.

morelandks · May 2016

Hi all - I just finished my first month on Aromasin and so far my SE's are very mild. So, taking the opportunity to bump this thread, and send out a "hooray!" to the universe!

grandma3X · May 2016

two months on Letrozole as of today - a few minor aches and pains but no real complaints. I had my cholesterol checked today and it's in the "optimal" range - my numbers are a bit better than they were before starting letrozole

ksusan · May 2016

I'd say my Tamoxifen SEs are decreasing.

SelenaWolf · May 2016

I'm completing my fourth year on tamoxifen and have had no major issues with it.

Hopeful82014 · May 2016

As I think I've posted earlier, I've been on Femara since Oct. 2014 and have no real issues with it, although it may have affected my metabolism somewhat recently. (There are other contributing factors, so I'm not sure letrozole is to blame.)

For those looking for Teva brand letrozole - my pharmacy became a CVS pharmacy this winter. Since then, all my letrozole and a couple other generics have consistently been Teva. You might find that a call to CVS will be helpful.

JoniB · May 2016

This Monday marks four weeks on Arimidex. No side effects so far. I am taking the name brand but plan on switching to Teva for my next renewal, which is in three months, if the pharmacy can get it.

nurse88 · May 2016

I have been taking it for 8 months no side effects noted, I do have joint pain in my fingers sometimes.

knittingPT · May 2016

I've been on Letrozole since about September of last year. About 3 months in I had a short period (maybe 2-3 weeks) of intense pain in the bottom of my feet and in my hands. I kept exercising and that really helped. I had horrible hot flashes at first but those have calmed down mostly and I only seem to get them when I get riled up emotionally. The first couple of months, my blood pressure rose slightly (I'm usually 90s/50s and went up to like 110/70) but that has also resolved on its own. My cholesterol also rose. I haven't had it checked again recently so I cannot say if that is still an issue or not. So, yes, some people do respond ok to these drugs and have a tolerable level of side effects. Hang in there all you newbies about to start! We are all so different that no one can predict what your reaction to a treatment will be. You just have to jump in and see what happens!

mustlovepoodles · May 2016

I've been taking letrozole (Femara) since early March 2016 and so far have had no SEs that I can tell. I went through menopause 2 years ago and that probably makes a big difference--my hormone levels gradually weaned down, rather than coming to a full stop suddenly. I have moderate-severe arthritis in my knees and that has not worsened. I went through menopause 2 years ago and that probably makes a big difference--my hormone levels gradually weaned down, rather than coming to a full stop suddenly. I have not experienced any hot flashes or mood swings since starting the letrozole.

Need encouragement - anyone tolerating hormone therapy well??

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