Spring 2018 Starting Hormone Blockers

kaywrite

Marigold - yikes! So sorry to hear that. I hope you're on the path to finding something both pain-free and effective!

MusicalMagpie - welcome and thank you for sharing your experience. I'm small, too, so I really want to keep an eye on that bone-loss thing. I did have a bone scan at the same time I had the routine mammogram that put me on the breast cancer freight train. Mild osteopenia. I'm on an AI. There is so much seemingly disparate information about Tamoxifen-type treatment vs AI-type treatment - it's hard to understand or make sense of. I suppose each MO has an educated opinion based on their perception of each patients health and history. I thought pre-menopausal = Tamoxifen, post = AI, in general. Let us know what your Oncologist says about the DIEP vs Tamoxifen! Take care.

star2017

kaywrite, I think that’s the way my MO sees it too. I’m on tamoxifen now, but after I have my ovaries removed, he’ll switch me to an ai

Veeder14

Hi All,

I've been reading everyone's posts although haven't started on Tamoxifen. Just looked at my bottle and there is a sticker on the side, "caution: Hazardous Drug Special Handling and Special Disposal Required" What? Does anyone else have this warning on their medication?

flowergal

Hi Veeder.

I am on anastrazole and no such warning on my label. Maybe you could ask the pharmacist about it. The first bottle of anast . I got the label said something about being in the sun, but nothing since. I do wear sunscreen and haven't noticed any problems. Who knows who even slaps these labels on bottles and maybe they put the wrong label on yours.

Billb464

I think it has to do with pregnant women handling the medication. I could ask my daughter to look it up, she is in her 1st year at UGAPharmacy plus she works at a Kroger pharmacy

Billb464

I am on my 3rd month of tamoxifen, I started April 5 th. So far nothing crazy yet, I really don’t have bone pain, more charley horses in my legs at times. I started taking a magnesium for that, we will see if it works😂. I am 52, diagnosed at 51, and was premenopausal. I had my 1st chemo in August, and haven’t had a cycle since, but I have enjoyed the full bloom menopause symtoms🤣.

The hotflashes come and go, a little less than what was during chemo. I did get a bone density scan 2 weeks ago, and all my scores are ++, so no worries there. My oncologists did test my hormones, they were low, but that is misleading due to the tamoxifen. I have two oncologist now, since I’m trying to get in the Pallus study and she said she wouldn’t put me in the menopause group until December since that was my last chemo, ThenI could switch over to AI(do I want to??? mild SE right now, unknown with a different medication).

I still have some reconstruction left ( nipple on right breast and lift on left breast) no one mentioned any problems with taking tamoxifen and reconstruction. Ofcourse mine is minor compared to a full reconstruction.

Beaverntx

Veeder,

No such message on my Tamoxifen bottle.

My funny prescription bottle message story is that, after suspicious results from my pre Tamoxifen pelvic ultrasound I had an endometrial biopsy. To prepare for the biopsy I was to insert a tablet vaginally the night before and upon awakening to help soften the cervix. The prescription label had the correct directions but the "added information" on the side said to take with food and milk ( it can be an oral medication too)! At least it gave me a smile😃

The good news is that the biopsy provided the diagnosis of uterine polyps with the path report showing no malignancy. I will be having both uterus and ovaries removed and will delay starting Tamoxifen until after the surgery(no great loss since I am post menopause by 20 years or so). If I started Tamoxifen now I would have all five predisposing factors for developing uterine polyps so we are seeking to eliminate some causes for future concern. Not looking forward to having more surgery but will be glad when I have had it and can get on with other things. Here's hoping for not too many SEs from Tamoxifen--my hair is thin enough and my joints have enough effects from arthritis already. Also, AIs aren't a good alternative for me with my 10+ year history of osteopenia.

Veeder14

Hi Beaverntx,

Great to hear your good news, no malignancy! That's funny about the added info on your tablet prescription. So this is sort of a dumb question but is your upcoming surgery considered a hysterectomy? Because of my BRAC2 I'm high risk for ovarian cancer so thinking about removal but I don't want to have another surgery immediately. I guess I would probably have everything removed though. Always more to think about. Let us know when you have a surgery date.

I hear ya about treatment with Al and bone issues. I have osteoporosis already so don't want to make it even worse.

star2017

has anyone else been breaking out into hives since starting tamoxifen?

Lula73

star-I has a god awful rash over my torso. MO said take Claritin/zyrtec/xyxal/Allegra everyday to help combat it. Vagicaine/Vagisil cream also works great and almost immediately on any itchiness.

star2017

thanks for the suggestion, Lula! It seems like hives, not a regular rash, as they appear and then disappear, but they are very itchy when present!!

Beaverntx

Veeder,

Not a dumb question at all. The technical term is total hysterectomy (cervix as well as the body of the uterus) and bilateral salpingo-oophorectomy (both tubes and ovaries)--getting it all out 'cause if it is not there, there will be less target for cancer. Surgery is scheduled for this Thursday. My surgeon not only is skilled in robotic surgery, she also teaches others to do it so I believe I will be in good hands.

I'm not thrilled either at having surgery again so soon but think the peace of mind will make it worthwhile.

Veeder14

Thanks Beaverntx for the clarification. Sending good wishes for your surgery today.

SLL101984

Just picked up my first bottle of tamoxifen today, I start on Monday...anxious, nervous, scared! I know if it’s that bad I can stop but since I’m only 33 I really want to try and take it as long as possible.

Marigold8

Interim Update:

I've been off anastrozole for 7 days today. My pain level has fallen from about an 8 to around a 4. I no longer have any pain in my wrists, shoulders, or knees. My ankles still ache but far less. (Hips and back...well, those were a problem for me with serious arthritis before hormone therapy; can't blame the drug for those.) IOW, all the pain I'd attributed to hormone therapy has already improved. I was able to walk up and down my stairs again and do my grocery shopping in the past day. Yay! Hoping my joints continue to improve.

Still have not decided whether to take tamoxifen. Give me another week to see whether all my side effects resolve, because I had others I've not really discussed.

Update next week, when the MO said I should have the drug entirely out of my system.

metoo2018

Hi all - I am back from my vacation now for a few weeks and settled back into a routine and am catching up on all the news from the group. Vacation was a wonderful reset back into normal life after treatment. My skin healed really, really nicely after the radiation and I felt good but a bit tired during vacation - not surprising.

Sorry to hear some of you are experiencing more issues with meds and future surgeries.

I've been on Letrozole now for 3 full months. Hot flashes have decreased and were pretty manageable in the beginning - much like my menopause experience. I have seen increased soreness/stiffness in the neck and shoulders, and pain in my elbow and I have plugged ears all the time (I doubt that is related but I've never had the problem before). And definitely some weight gain. I've struggled with weight all my life, gained during menopause which I think was my biggest cancer risk factor. I have been careful so I don't think it is normal weight gain due to over eating or changing my routine - I think it is absolutely a SE.

Of course every time something happens I think - is this aging? is it because I've been gardening more? Is it temporary? So it is hard to know when something is a SE or can be explained away. I see my MO on Monday for my 3 month followup so we will see what he has to say.

Glad to see you are all still fully engaged and sharing information.

Dodgerick

I started Tamoxifen June 1 (the day after I finished 5 weeks radiation). No obvious side effects so far, maybe it will just go smoothly?

Beaverntx

Ok, gang, here goes. Just got the path report from my hysterectomy etc last week-- there were some changes in my uterus which had a10% chance of becoming malignant so she (the surgeon)said I made the right decision to hold off on starting Tamoxifen until after the surgery. Looks like this evening will be the first evening of my Tamoxifen train ride...finally moving on!

kaywrite

Hi SLL - best of luck. Many of us do not have SEs, so you may not, either. I understand though - I was not looking forward to it. I still don't like the idea, but like the alternative even less. I read more and more about alternatives to AIs, is it so for Tamoxifen?

Marigold - glad you are feeling better. Are you going to try anything else? I read about Letrozole today, after metoo posted about it - how similar it was to Arimidex, etc.

metoo - glad you had a good time, got to relax. When I saw you were taking Letrozole I looked it up and found a study between that and Arimidex that was interesting (basically the same, mostly same SEs, etc.). I'm not sure about the couple of pounds I've gained, either: goat cheese and gelato? Or hormone therapy? Or age? All of the above?

Dodgerick - way to get the job done! Keep us posted!

Hope all you wonderful gals are doing well.

Dodgerick

Good luck to us all with our "new normals"! I'll need to stay on the Tamoxifen for at least 5 years, then go on to something else according to my oncologist. I guess I'll cross that bridge when I come to it. Who knows, maybe they'll have something even better by then!

My BRACA test came back! My doctor says test results are NORMAL...I was really happy to share the news with my 3 sisters and my daughter so they don't have to worry as much about getting the "breast cancer gene". Thankful for every little thing at this point! With surgery and radiation behind me, I'm ready to get on with life and ENJOY!

star2017

congrats, dodgerick! Very happy for you

gigibee

i have been on Tamoxifen for over 4 months now. I was taking at night initially and was having some sleep issues so I switched to the am. Main side effect I notice is that I am tired. Esp in the afternoons. I work out regularly , before diagnosis , while in treatment and now on the tamox and I do believe it helps with the joint pain etc. so far there's is nothing that I can't tolerate as far as side effects. I am 44 and pre menopausal so limited on my rx choices

gigibee

I also did not have any baseline testing like bone density or uterus lining

Dodgerick

My doctor ordered a bone density test before I started a hormone blocker. it came back mild osteopenia, so he chose Tamoxifen for me. The oncologist wants for me to stay on Tamoxifen 5-10 years, then he will probably put me on another hormone blocker. I have lymph node involvement, so he said I’ll probably be treated with hormone blockers forever.

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PatsyKB

Dodgerick, sounds like your MO is being proactive, just as mine seems to be. I am on an AI (Letrozole) and my MO also ordered a DXA bone density test this week. I had been mildly osteopenic previously and was disheartened to find that I've lost enough since my previous scan to now be placed in the osteoporosis category. My MO has prescribed Prolia and I'll have my first injection next week (2 times a year injections). It has a very strong track record in halting or even reversing bone loss, plus it protects against METS in the bone (important for me, as I have IDC). So one more med, but at least it's not a pill!

Good luck to you - stay in touch with us!

SLL101984

For all the ladies here who have not gone through menopause, what are you doing for birth control? I got pregnant extremely easily with our daughter and I do not want to totally trust condoms. I just started tamoxifen so I don’t know what it will do to my cycle, if anything, but I need some type of birth control that I can count on. I was thinking about the paragard iud? Anyone have any experience with that one? I need to call my oncologist and make sure it’s ok with her, my OB said it’s perfect on her side of things.

star2017

I’m planning to have my ovaries removed soon. Until then we’re being extra careful

Lula73

SLL-mirena is being recommended for women with BC on tamoxifen as it helps protect against uterine lining thickening and uterine cancer. This is based on results of clinical studies in BCO patients taking tamoxifen. The small amount of hormones are local and not systemic which makes it different than say birth control pills. If you’re GYN or MO is not up to date on the latest studies you may have to provide them. If you need the links let me know.

Magari

Hi, all. Checking in - I'm now 3 weeks in on Arimidex.

I saw my MO today for my Herceptin/Perjeta infusion and asked her what she recommended to help with the increased hot flashes and joint pain I've started experiencing. I told her that Naproxen was working better for pain relief than Tylenol, and she said that was a better choice anyway, since it's an anti-inflammatory. She also suggested Glucosamine Chondroitin for the joint pain, and prescribed a low dose of Effexor to reduce the hot flashes.

We also discussed the fact that I am happy about the roughly 10 pounds that I've lost during treatment and want to keep it off. (I was a healthy weight before, but now I am actually almost slim!) She said that the Arimidex would work against me in that respect. So I will use that as extra motivation to continue to watch what I eat and remain active.

SLL101984

Lula73, if you could provide those links that would be great! I’d like to read up on it myself also.