Starting/declining hormone therapy Nov, Dec, Jan 2018
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Hi Michelle_in_cornland, for your roll call....
I waited until I had completed RO to start on Tamoxifen. With the blessing of my MO, I have just finished 3 weeks of 10mg and so far the side effects have been minimal, mostly joint pain and hot flushes. I have 7 X 10mg tablets left and tonight I decided that I will start alternating daily between taking a 10mg and a 20mg dose. This is my last ditch effort to minimise the side effects of moving straight to the 20mg. Fingers crossed it works, if not I have already decided that I will talk to my MO about remaining on the 10mg dose.
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Hi everyone! Just doing a weekend check-in, also because THIS ridiculously adorable photo of my husband carrying Domino happened on our morning walk and I have to post it (we put my hat on her to keep her little face in the shade):
Anyways, I'm still doing fine on 10mg tamoxifen, hope it continues. Next week with March my follow-up appointments start up again and I'm not looking forward to it... honestly it was kind of nice to have a break from that cycle of appointments and scans and poking and prodding in February. But March here we come, I've got a follow up with the radiologist and oncologist, whee...
bennybear - I will take pics of the two recurrences article and post later this week! Thx for your patience on this! I'll PM you when I've posted them so you'll know.
egregious - glad you are picking up again, and I empathize re: the anxiety of how this would all go, I've felt it too. I still have a bit of anxiety around the 20mg dose...
OTmom - I strongly believe that you need to do what is right for you, and hormone therapy is a long-term, multi-year treatment. Better to start in such a way that your body can adjust to it vs. rushing in, getting SEs and feeling like you want to stop. The reason I did the slower start was because a couple people I met through the forums who seemed to be having an easier time with tamoxifen actually eased into it, so I talked to my onc. about easing into it as well. We have to advocate for ourselves as well, some docs are very one size fits all. Hence the power of sharing and learning in these forums!
Jaboo - I haven't had much in the way of SEs on a half dose of tamoxifen so far too, here's hoping that maybe the SEs will be minimal or non-existent for you if they are so far.
Ingerp - your post made me think of my friend who is my age, does not have cancer, but is going through what she calls peri-menopause and having hot flashes and other things that we associate with tamoxifen. It was a bit of a comfort for me when she shared that she's going through all of this, and in her case it has nothing to do with cancer or the treatment. I thought well if I get these SEs at least we can commiserate (my friend and I), but so far interestingly enough I don't have hot flashes or anything yet.
dtad - I agree with you that we need better treatment options! It's so interesting to me that breast cancer is treated so aggressively.
purplecat - you're my partner in crime on almost the exact same timeline as me on rads and now tamoxifen! The only difference is I haven't upped to the full dose yet... me, little miss positive, is anxious about it, and there's that study I found / posted, so... I'm meeting with my MO in March and we'll see what he says. I've heard good things about magnesium and of course exercise so keep it up! I think that should definitely help with your leg cramps. I need to ramp up exercise, but the diet thing I've embraced since this whole thing began and I lost 30 lbs since the diagnosis... maybe my super clean eating is helping with no SEs? Who knows, but can't hurt. Tip - I've discovered a great recipe to almond butter cookies with no sugar and they are delicious.
And yes, my Dad feels it applies to invasive breast cancer as well, and I'm pretty sure I've seen studies, just smaller ones, showing 10mg doses have similar efficacy to 20mg, I just need to dig those out (I collected a LOT of articles on tamoxifen and how to avoid or combat SEs while on tamoxifen before I started, now I need to comb through them all).
pupmom and michelle_in_cornland - so glad you are both doing well, and both of you are my examples! Thank you!
alicebastab - what a great plan with the scratch off tickets and cheering you on to get through this next phase with diet/exercise too!
thecargirl - agree with you that we need to be our own advocates. Are you taking anything now or did you decide to approach it differently with the SEs you got?
GreenHarbor - OMG I love, love, love that you have an 18 year old jack russell terrier! Our Tucker is 16 or 17 (we rescued him 15 years ago and he was 1 or 2 then), and Domino is 12, and dogs like yours give me so much hope that our little ones have lots more in this life with us. Um, Tucker is snoring too as I type this.
tc73 - I plan to talk to my MO about remaining on the 10mg dose as well. I have a feeling he will push me to go to 20mg but we'll see, I'll keep everyone posted.
Waving hi to HPFULL, sugarmaple, wised, spoonie, dani, innab, lplibrarygirl, hapa, kec1972, rljes and others as well!
Who else felt like this over the weekend (Tucker demonstrates)?
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TC73,
If you are nervous about the 20mgs, ask for the 10mgs you have been taking and take them at different interval. I take mine at 8pm and 11pm. If, for some reason, I am ill, with a virus, stomach issues, etc. I may take just the 10mgs. That happens about once every 3 months or so. Having the 10mgs allows me a bit more control, and puts me in charge of my meds. I am a firm believer of owning your medication, not letting the medication own you. I am a bit OCD, when it comes to my health and how I take medication. I also like to have some flexibility built into my my framework. My doctor had said, when I first started, that when I went on vaca I could take a break on Tamoxifen. I did not need to do that, because I felt better taking the Tamoxifen. Maybe, just knowing I could have taken that break, gave me more ownership and calmed my mind. How we do things matters, and how we think about things matters too!!
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Hi guys!
I'm still doing pretty well on anastrozole/goserelin. I'm not having periods, which means I'm not having migraines, which is freaking fantastic because my migraines weren't just painful, they left me feeling groggy and/or loopy. It's just so nice to not have to deal with that anymore.
I have still been having hot flashes. I had them on chemo but they seem more intense now. They're still not a big deal though as I only get them when I think about getting up. Seriously. If I'm laying on the couch and think to myself, "I'm kind of thirsty, maybe I should go to the kitchen and get a glass of water" I"ll get a hot flash. If I'm in bed and have to pee and think about getting up to go to the bathroom, I'll have a hot flash. It's weird. I feel like if it's my thoughts that trigger the hot flash, I should be able to control them, you know?
The insomnia is better but still there. No change from my last post really. Sleep comes most nights but I wake up after a few hours and just don't feel rested most days.
I have also noticed that I am getting foot and calf cramps at night, on nights when I've worked out. The harder the workout, the more likely I am to get the cramps. Now that I'm getting back out trail running more often, I'm noticing that I get leg and foot cramps almost every night after trail running. Is this from the drugs? It's hard to say. I mean, my husband was getting cramps last night too and as far as I know he's not stealing my drugs. Sympathy cramps, maybe? But it does seem like I get them a lot more than I used to. I didn't used to get cramps at all just working out at the gym, but now I occasionally do. I was getting some last night and put on some compression socks (the kind they make for runners, I got some when I was having achilles tendon issues, they're knee high with 15-20mmHg compression and I also have some that are 20-30mmHg but those are kind of uncomfortable to wear to bed) and no more leg and foot cramps. So that seems to help. Just thought I'd mention that in case anyone else is experiencing cramps.
Anyway, I have a DEXA scan scheduled in a couple weeks so we will see how my bones are. This will be my baseline scan even though I will have been on treatment for three months. If it comes up showing osteopenia or osteoporosis, I may switch to tamoxifen.
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For the roll call...
Started 20mg Tamoxifen mid-January. I went full on with the whole dose. I take it in the morning with food and other medications. I had nausea at first but that was gone within a week. Some unpleasant things going on in my nether regions...discharge and first UTI in 10 years but other than that I am doing ok!
I haven’t been great about updating because I haven’t had too much to report but wanted to share my experience after about 6 weeks on Tamoxifen.
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This isn't really tamoxifen-related, but maybe those on this thread can relate. I just had my first regular dental checkup since this all started, and it was a little more emotional than I had expected. On the regular health history update form I had to check the boxes for tumors and radiation, and had to list tamoxifen as a new medication. I also refused the annual X-rays because I've just had ENOUGH of testing and radiation for a while. Both the dentist and the assistant asked questions, and then on the way out I found myself telling the receptionist about it too because she's always been super-friendly, has been checking me in and out for years, long before either the current dentist or assistant ever started working there, and it's a tiny enough office that I know she'd overheard everything and it would have felt weird not to fill her in. Everyone was really positive, saying things like "So you're in remission now, yay!" I don't know why it made me feel emotional. Maybe because it's the first time I've told the story as if it's in the past (which is is, Lord willing) instead of something I'm experiencing now. Maybe because it IS now part of my story, and I'll have to tell it over and over in coming years.
Funnily enough, the skipped X-rays are the third time in recent weeks that I've refused some sort of physical handling. When I had my followup with the surgeon a couple of weeks ago, I was told a male resident was in training with my (female) surgeon, and asked if I'd prefer him not to be present during my exam. I said I'd rather it be just the surgeon, and they honored that. Then I attended a new yoga class where the instructor passed out cards to set by our mats with the "yes" or "no" side facing up, indicating whether or not we wanted to be touched and adjusted for corrections during the class. I chose "no." I've never been particularly bothered by male medical staff, and thought yoga adjustments were just part of every class, so have been a bit surprised not only at my own responses but by how empowering it's felt to set those physical boundaries and have them respected.
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PurpleCat--you go girl! I'm not surprised you want to feel like you're in charge after the last six months. Continue to do what feels right for you.
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My endoscopy came back normal and I'm now on megadoses of 40mg of omeprazole morning and night. The good news is, I think it's finally solved the heartburn/reflux issue. I need to now follow up with the GI doctor and see what the long term plan is, because I'd rather not be on this forever - I think it has scary side effects of its own. Still, it's SO nice to have my old stomach back again.
Other than that, I think I'm doing fine on the tamoxifen. Taking it with breakfast, 20mg per day. My skin seems to have stabilized and I'm using adapalene or tretinoin (depending on insurance) to try to keep the hormones from wreaking havoc on my face, and it seems fine. I'll keep on that if I can because I think it has vanity anti-aging benefits too.
I don't know if the stress of this whole thing has been turning my hair color, or if it was my time anyway. But I finally have enough white strands in my hair that I think it's time to embrace it. I had been spraying a 'gray-away' color on my part (where it had been most visible) most mornings. But I'm going to go natural now. It fits my (theoretical!
) values better, it's easier and cheaper, and I'm lucky to be in a job where my looks don't really matter. Also maybe it'll make people take me more seriously, and strangers men stop calling me diminutives...
We had February break last week and I went on my first beach vacation in I think about a decade. It was wonderful and relaxing and idyllic.
Unfortunately I picked up traveller's diarrhea at the end, and today is the first day since I've got home that I can keep down food and not be basically tied to the toilet. So back to work tomorrow.
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Yay Purple Cat for owning your story, and being in charge!
Yay Salamadra for getting your stomach back...and your face... and tolerating Tamoixfen! I think a beach vacation was just what you needed. Hope the next stretch of school goes well for you.
I seem to be noticing a few more SEs of letrozole. Over the weekend I was very weepy, so tired and achy. Monday was fine and today was good until I went to PT. While getting my arm/shoulder stretched and twisted I just got teary. Tom, the PT, noticed immediately and said he thought I had done enough for today. I tried to tell him I could tolerate the discomfort if I felt like I was making progress, but it just seems so futile and I am so frustrated...but that made me cry. I'm sure he's seen it before and I know he felt sad for me and now I am feeling kind of embarrassed about going back. I came home and slept for 2 1/2 hours then called a friend. My friend was out and when I tried to leave a message I cried again. Geesh! Guess I need to up my Rx of Zoloft.
Hapa, I have the same sleep issues. I think if I could just get some good sleep I could handle everything else much better. Here's to better days (and nights) for all of us! 💤
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PurpleCat - I will also be skipping dental X-rays. I have a coworker who is a cancer survivor and he put the idea in my head.
Salamandera - I am in the quickly graying camp as well. I was thinking of getting a blue streak put in my hair when it gets long enough. Hopefully that will cover the grays. Sometimes it upsets me that I wasn't able to enjoy these last few years of non-gray hair due to chemo but I try not to think about it too much.
LP - I wonder sometimes if all the moodiness attributed to these drugs is just a result of lost sleep, either from insomnia or hot flashes.
Oh, and it looks like I jinxed myself with that post yesterday. Woke up this morning with a headache. And nausea. And a soreneck and shoulder, upset stomach, light sensitivity, grogginess, the whole nine yards. I thought I was done with migraines. I guess not
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looks like it was such a nice trip Salamandra💕 Sorry you had stomach issues at the end.
Hapa sorry the migraines came back. Boo to migraines
Lplibrary-sending you a big hug. This whole thing is such a process and roller coaster of emotions. I went on an antidepressant Effexor that helped me so much.
Cutest foggy in your hate photo pebbles.
Purplecat- I don’t think I would want xrays either
I have 9 more rads sessions left and then I will up my Tamoxifen dose to 20mg. Mentally I feel better than I have in a while. I think the Effexor is making a difference. I was just so down before, now I feel a bit more level
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I met with my new MO today, who took the place of my MO that retired. We spoke about doing a white paper or study of introductory doses of anti hormonals. He said that the big $$ is on MBC. My thoughts are, there are 3,000,000 women that have had breast cancer, many could not take the anti hormonals because of their initial issues with the higher doses. If more women know about ramping up to a therapeutic dose, the the gray cloud of doom can be taken off of the little bottle of pills. My bottom line is that there needs to be published protocols, allowing flexibility, for greater compliance in taking anti hormonals. We have a medical school and a cancer center where I live. My next plan of attack, is to find a sympathetic ear, willing to write a white paper. I don't believe that a study is necessary, but a meeting of the minds of patients and doctors, looking for a better approach to the physical and psychological aspect of taking these medications. So, a continuation on my quest to inform other patients about alternative initial dosing. MO's are more than willing to work with patients, but we should not have to ask. We should be handed a workbook/information packet, explaining how to start the medication.....and not just......"here's your 20mgs."
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Purplecat- Good for you, and I am glad for you that you felt empowered by those experiences! You deserve that and to feel the control you have over your body!
Salamandra- YAY for beach vacations! It looks like it was beautiful and relaxing (except for the GI issues at the end☹️) so happy to hear your reflux issues are being controlled! I have decided the opposite on the grays😂. Mine have multiplied and I am getting them covered tomorrow! I don’t usually spend money on stuff like that but I decided to give myself a mini post cancer make over with a haircut, color, and getting my eyebrows done! I need a little boost these days.
LPLlibrarygirl- so sorry you had a bad weekend if SE’s. Damn hormones ( or lack of) I hope you can get some good sleep soon.
Hapa- migraines suck and I am sorry you are struggling with them again.
Pebbles- Domino looks dashing in that hat!
Michelle- I like the idea of a handbook and I appreciate that you are speaking to your MO about the importance of this. I don’t feel mine would be very receptive. Maybe an outline in that workbook on how to effectively communicate SE’s and not feel dismissed as it seems so many are. Just knowing there are possible treatments to help with SE’s would make some feel better.
I am still on the 10mg dose. I am taking at night before bed. I plan on doing a full dose every other day starting on the 6th. I am not sure if it is a SE but fatigue seems to be winning these days. I am trying a just push through it approach. I am still going to the gym but last few days I have a persistent pain in my foot/ lower leg. I have not been working out that hard at all so no clue what that is about
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Hi Everyone,
Have an appointment with my MO Friday to discuss Arimidex (restarting) and Nerlynx. Diff going to spread apart taking those pills.
- LPLibrary - My Pharm MO told me I'd be an emotional basket case for the first 30 days. Sorry you had to go thru that with your PT.
- Hapa - I'm so sorry you have Migraines. I do to. I didn't have any during chemo, was a nice break. I woke up with a migraine this morning, took an Imitrix Injection, then Chemo Brain set in and 15 minutes later took a Maxalt pill. I always wondered what would happened if I took the two together. Actually my Migraine went away with no Side Effects. Whew!
- Michelle - Bravo!
Take care everyone, Rj0 -
Dani, when did your rads end? I did not have radiation fatigue, but many people do. I had the opposite, radiation insomnia. I am determined to get information committed to paper, so that the patient feels empowered and actively participating in the introductory dosing of medication. If necessary, I will ask to present my topic at the Symposium this year. We need a voice, a current voice, that can speak to having a successful introductory dose. Organizations cannot speak for us, companies cannot speak for us, we have to speak for ourselves. Doctors are more than willing to work with patients, but we need more information in hand, for something that we are committing 5 or 10 years to taking. Compliance plays a role in progression and recurrence, so if there is a way to encourage compliance, we need to work together to find a way to help in that regard.
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Michelle- My rads ended Jan. 23rd. I did experience fatigue during rads, I felt like it was getting better but now not so much.
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I started taking Anastrozole on Dec. 10. Had wicked hot flashes until I was put on Effexor. My knees started bothering me a little if I sit too much. I exercise every single day, but not walking a lot because of cold weather. It wouldn’t be a problem if I didn’t have lymphedema and didn’t have to bandage my right arm. With layers of bandages it barely fits into my winter jacket. Waiting for the spring and for lymphedema to subside. Sigh...
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Hi Everyone,
InnaB - sorry you have Lymphedema. so far I havn't, A note to self: I need to start exercising and stretch again. Have you any other SE's with taking Anastrozole? I started having hot flashes the day I was Dx and stopped Estrace Hormone pills. They are wicked. I'm hot all the time.
I Can't take Effexor - causes migraines for me. Anybody else take anything to subside the Hot Flashes?
Thx - Rj0 -
rljes- some people take gabapentine for hot flashes. I was on it for pain but had to stop as I was getting depressed so switched to Effexor but I do get migraines argh
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Thx HPFULL - I can't take gabapentine. (can't remember why - Either It made my skin crawl or groggy - I have a list of SE's for all my medications - somewhere (Chemo Brain) Sorry you get migraines.
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Hi everyone...I take a supplement called Relizen. It's not cheap but it does work!
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I get my first Lupron shot on Monday. I'm excited about the part where I stop having my period because they've always been painful and problematic, but am suddenly really sad about more looming physical changes. I'm also still not back to full speed post-radiation, so the "I made it through the week and now I've got nothing left" energy crash isn't helping with that. Off to yoga class in a bit. Hopefully that'll be a good reset.
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Dani and OTMom, my fatigue started to lift about 3 wks after I finished rads. It took another few weeks to totally go away. The fact that it was also the holiday season didn’t help! InnaB, my knees also feel stiff first thing in the morning or if I’ve been sitting a while. Is it the anastrazole, being 52 years old, or the fact that I’ve been more active? Probably a little of each. OTMom, I go to a weekly yoga class that I love. I find it really helps my mood and stress level. I’m sitting on my sofa in Massachusetts watching the snow fall. We’re expecting 4-7”. Another storm arrives tomorrow into Monday, and the forecasters can’t make up their minds if it’s going to be snow, sleet or rain. It’s been a stressful week at work, so I’m happy to be cozy at home. Wishing you all a relaxing weekend!
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dtad, thank you for mentioning Relizen. I had never heard of it I just looked at all the info on their website. I’m going to give it a try!
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GreenHarbor, I'm almost to 3 weeks and it's definitely better- just not consistent or sustained yet. I feel OK, so do things as if everything is normal and then I crash. I'm also in MA, watching the snow. We're only getting a couple of inches in the Boston area, but I'd kind of like one good snow day before the winter is over. I was glad not to have a ton of snow during radiation, but now it just feels weird. Plus I'd like a random day to just cancel everything. Snow or not, I hope everyone has a good weekend.
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Hi. For those of you with migraines; my POP told me yesterday that magnesium helps migraines. I have been taking melatonin to help me sleep since I don't sleep well at all since Tamoxifen and she mentioned adding magnesium for sleep as well and said that it also helps with migraines. You all might know this already but thought I would share just in case
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Hi Everyone
I went to my MO yesterday (who I dislike) but he must of taken a Sensitivity Course because he actually acknowledged my Side Effects from Arimidex. (Severe knee /spine bone pain, horrible itchy rash just to name a few) so he switched me to TAMOXIFEN.
I Mentioned to him about the study of reducing the dosage of Tamoxifen from 20mg and being effective. He said he had not heard of such a study and was skeptical. But I'm keeping an eye out and having hope! Of course he called in to the Drugstore for 20mg (I told him I wanted to start slow - so he must of not passed his Sensitivity class) I'll have to call back for the 10mg after speaking to the pharmacist - she said they are hard to split.
Best of all, he said I didn't need to take NERLYNX because of the 'Possible' harsh side effects. Glory Hallelujah! I didn't know if I was going to take it anyway, but its nice to know I have support. (for the first time)PORT - Now I have to decide about port removal. I really don't need it - but in the back of my mind I'm thinking what if I have to go back to the ER for Sepsis again? I have very small, rolling, weak veins. How long after finishing your Chemo/IV's did you wait to have your Port Removed? Where you an Out Patient ? (Did it hurt?)
HPFULL - I will start taking Magnesium - It seems to help with all sorts of things. How much do you take?
dtad - How long did it take for RELIZEN to be effective? On the website it said 2-3 months.
hapa - sorry about your migraines (and everyone else) I had one this morning, took MAXALT and Compazine and thankfully it went away.And to all that exercise and take Yoga. I'm proud and impressed. I can't seem to get off the couch. One of My Drs gave me a RX for RITALIN - to give me a little pep. we shall see. Take care - Hope not too much snow. Rj
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just an aside, I read magnesium is absorbed through the skin. I have switched to natural deodorants to avoid aluminum and am using some sensitive ones that are magnesium based. Don’t know if it helps but I thought it couldn’t hurt.
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Rljes, I had my port removed 2 months after chemo. I only used it once besides chemo, and that nurse seemed unfamiliar, so I figured why keep it and go through the bother of periodic flushes. I had it put in and out as an outpatient with only a local. No problem.
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rljes, I had my port removed about 3 weeks after chemo ended. It was uncomfortable for me since day 1. My MO wasn’t thrilled about it and wanted me to keep it for at least 6 months but relented when I was insistent. I love my MO and this was really the only thing I pushed back on during my treatment. I also had it removed with a local because I didn’t want to be sedated again. It was no big deal
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