Starting/declining hormone therapy Nov, Dec, Jan 2018
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My side effects from anastrozole seem to be dissipating. I've slept well for the last week and even the hot flashes seem to be going down in frequency lately. And I think the last of my CIPN has finally resolved. I hope this trend holds!
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Hi LPLllibrary,
My MO and the second opinion MO both recommended an AL for better protection. However, my MO is ok with me taking Tamoxifenthough. I can’t see taking an AL that attacks my bones when I already have fractures and major bone issues. After 5 years I would be so fragile that I couldn’t pursue any of my favorite activities. The bone medications can’t possibly catch up with the bone loss I already have so taking an AL would just make it worse. New meds could be on the horizon maybe so I’ll start with Tamoxifen
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I have been on 10mg of Tamoxifen for a little over a month. Side effects have been okay. At first I didn't have my normal migraines, but they have seemed to return. I noticed I do not sleep through the night like I used to and I am also losing a bunch of hair. Is anyone else having hair loss? My hair is already super fine and on the thin side, so I was sad when I began to notice a good amount comig out when I wash or brush it. I am wondering if Biotin would help?
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HPFULL, that's distressing about your hair. Are you eating well? Maybe add a multivitamin that has minerals so you are getting the necessary magnesium and zinc [but watch it on the zinc, it is possible to get too much]. Might have biotin in it as well. I had a young friend whose hair loss was turned around by adding this daily supplement. Make sure it has minerals and not just vitamins.
Hope things work out for you, and keep us posted.
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HPFULL, immediately after radiation, my hair came out by the handful. It continued to shed during the start of tamoxifen. I thinned for about one year and started a thread on hair issues. I worked diligently for two years, my hair has regrown and is healthy. If you want to know what I did, pm me.
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My hair started thinning after my hysterectomy in 2008. It was gradual, but noticeable, and had gotten pretty bad in recent years. When I washed my hair, every time it looked like I'd drowned a gerbil in the drain. I'd have to grab my hair several times a day to get all the loose ones, and my clothes were covered with my shedded hair. I started biotin around the time I finished rads in December. Maybe it's a coincidence, but I'm only losing a small amount of hair when I wash it now, and a very modest amount otherwise. I'm curious if it will continue or if it's a seasonal aberration I hadn't had (or at least noticed) before.
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Good morning all,
I was diagnosed with stage one BC this past December, had a lumpectomy, lymph nodes were negative for any spreading and I am to start four weeks of radiation soon. My concern is the anti estrogen therapy that is to start after radiation. I’m 59 years old, I’ve been post menopausal since age 40, and have been on hrt all these years and done well with them. Of course, I’ve been told to stop them now. I have multiple sclerosis and fibromyalgia, so, I’m worried about all the possible side effects of the anti estrogen med. my oncotype results were very low, I’m just thinking aloud and wondering how bad it would be if I refuse the meds? I really don’t need to add on any more symptoms caused by side effects. 😬.
Catherine.
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HPFULL, my hair has thinned a little in front since I've been on the anastrazole. My husband and sister swear it's not noticeable. My hairdresser sees some hair loss, but also growth. She said (and my MO agreed) that extreme stress, like cancer diagnosis and treatment, can affect your hair growth cycle. I've switched to a shampoo and conditioner for thinning hair. It's not getting worse, but isn't improving either. On the spectrum of side effects, I know it could be worse, but I am not happy about it!
Catherine25, welcome! If you've read the older posts on this thread, you'll see we are a diverse group. You mentioned your cancer is stage I and you have a low Oncotype; another factor to consider is your grade, which will tell you how aggressive your cancer is, and also the results of hormone receptor testing (is your tumor ER+, PR+ or HER2+). Based on previous conversations on this thread, here's some food for thought:
1. If you haven't already, check in with the doctor that manages your MS and fibromyalgia. They should be aware you have another diagnosis, and may have thoughts that will guide your treatment choices for the breast cancer.
2. Consider the timing of the radiation and the AI/tamoxifen. Many women on this thread finished rads and then started the medication. The theory is that if you do experience side effects, it's easier to narrow down the cause if there's just one new thing going on at once. I think I'm in the minority because I started anastrazole before rads, with the approval of both the medical and radiation oncologists.
3. You will probably have a DEXA scan to measure your bone density. AI's can have a negative effect on bone density. In spite of finding out I have mild osteopenia, I decided to still try the anastrazole, while increasing my calcium intake and weight bearing exercise. Several women on this thread have decided on tamoxifen instead, since that doesn't affect bone density.
4. Many, many women on this thread have started their medication at a partial dose and gradually increased it over time, to give the body time to adjust and hopefully lessen side effects. I'm definitely in the minority on this one- I started at full dose, not knowing I had a choice.
5. There are several AIs. Some have side effects on one, switch to another, and do better. Some women switch from and AI to tamoxifen and vice versa. Some notice a difference taking a name brand instead of generic.
6. If the side effects are horrible, you can take a break, or stop taking it altogether.
The point of this loooong post is to reassure you that there are many options out there. Whatever you choose, we will be here to cheer you on and support you! My final piece of advice is to consider joining a thread for people starting radiation the same month as you. I did OK physically during rads, but found it very hard emotionally. The women on that thread cheered and supported each other each day of treatment.
One final message for those on this thread, even if you just lurk or have only posted once... I checked when I started typing this post, and we're up to TWENTY pages! Wow! We must be onto something here to have kept it going so long.
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Catherine—I’ll tell you what my BS told me. He said if he had a female relative who was refusing an AI he’d crush it up and sneak it into her oatmeal. I remember one poster said her MO told her the AI was more important in preventing recurrence than chemo. I believe it’s a very important part of your treatment plan.
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thank you so much
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thank you so much
I really don’t want to be in this cancer club. How can I opt out. Lol,,,argh. My MS doc knows about the new bc diagnosis, not much advice from him. I’m starting radiation 2/25, for 4 weeks and then after that, I’m to start the anti estrogen. I am super sensitive to a lot of meds , I’m alwYs tired from the MS, yet, I still stay busy with housework, and my grandbabies. I really don’t wNt to take any meds, but I’m sure the oncologist will not be thrilled should I decide not to.
I’ve had a dexa scan, it wasn’t bad at all. Mild osteopenia.
Thanks again everyone.
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Catherine, welcome to this thread. You will love the compassionate support. My MO was okay when I decided against chemo but she was adamant that I take hormone therapy. You have a lot to consider and I wish you well.
Veeder, my MO said I could do Tamoxifen to be kinder to my bones, if I wanted. You have a lot going on and I think you are wise to consider your quality of life. I did read (and post somewhere on this site) some information about a new bone medicine called romosozumab. I believe it has just recently been approved but I don't know much about it. My MO didn't mention it and I forgot to ask her about it.
DaisyGirl, I hope you had a happy birthday. Best Wishes!
Paco, I am sorry to read about your hair loss but thank goodness it caused your MO to do some testing to discover your liver damage. Take Care!
HPFULL and Alice, hair thinning is worrisome! Just in the 4 days of half dose and one full dose of letrozole I have noticed that I am scratching my head a lot. I hope it doesn't lead to hair thinning, though I have been thinking for a year or more that my hair was falling out at a faster rate. Thanks for the mention of biotin, Alice.
It's snowing again...might be a good day for a nap.
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Welcome Catherine! Hope you find the support and encouragement you are looking for in these threads.
Here's a link to the current month radiation support group:
If you want to make your diagnosis and treatment visible at the bottom of your posts, go up to the top of this page on the right where it says 'My Profile' and then click on My Diagnosis or My Treatments. Then look on the upper left side where all those blue bars are for 'Settings' and make that information visible to us. Not required of course, but helps the rest of us understand where you are in your journey.
Take care and keep us posted.
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Hi Everyone. SInce I stopped Arimidex because of the severe SE's, I have done nothing but sleep. I don't even have to take my usual Ambien at night - I've never slept so good in my life. But I sleep all day, all evening, all night. Too groggy to drive, and I live alone. About to run out of supplies. As much as I love to sleep, this is strange. (Plz Don't suggest I ask my MO - he knows Nothing - he doesn't believe in SE's) THANKGOODNESS for these threads - and helpful hints how to take care of myself. I've been taking Oxybutinin for hot flashes, and Claritin for bone pain - neither has helped. Maybe Oxybutinin is making me sleepy. I'm one of those who are very sensitive with medications.
One of these days I'll start taking Arimidex again, only this time maybe 1/4 or 1/2 for several months. Like I said, whats a few months compared to 5-10 years?0 -
Michelle_in_cornland- I have been losing hair like crazy too! I really started noticing it right after finishing Rads. I wondered if it is stress? I seemed to have developed random anxiety as well since rads was finished. I am taking biotin but not seeing a change, also still doing 10mg of the tamoxifen for now. I am really worried what it will do when I move up to the 20!
HPFull- I hate it for you that the migraines are creeping back in. Do you take a preventative for them or just rescue meds? I hope your SE's improve over time. It seems for some there is an adjustment period in the beginning and there is hope SE's could level out over time.
Hapa- I so hope the trend hold for you. Yay!! for good sleep.
Catherine- Welcome!
LPLlibrarygirl- Snow is a great reason for a nap:) Enjoy
Peebles- So I have not made it to yoga, BUT I joined a gym today along with my sister!!!! I am actually pretty proud of myself. I am an introvert and have always been intimidated by going to a gym. We actually did some time on the treadmill and bikes today! I am hoping it will help minimize SE's and also help lift my anxiety/blah that I have fallen into since finishing rads.
rljes- How frustrating, I hope you find the culprit for the sleepiness. Hopefully someone has had experience with that med and can weigh in with some advice. Just plain sucks that your MO won't acknowledge your SE's.
Just had time to pop in for a quick hello! Take care everyone.
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Hi everyone! This is more of a broad post for those of us on tamoxifen - I wanted to share this article that was published in an oncology conference and probably is not even too public online yet. I got wind of it through my Dad as he still goes to these conferences. Basically research showed that 5mg of tamoxifen was just as effective for super early stage bc as 20mg. I think there are other smaller studies showing 10mg is as effective as 20mg, it's just that a study as big as the one with 20mg hasn't been done to the same scale yet. But it looks like it's starting to litter in.
For me personally, at my Dad's advice, I'm going to stay on the 10mg dose until I see my oncologist in March. Maybe I will just be my own personal study and stay on 10mg to get the benefit but minimize side effects - I'm also making the nutrition and lifestyle changes (I lost 30 lbs since the diagnosis and trying to exercise 30 min a day 5 days a week since that's supposed to cut our risk of recurrence by half). Maybe the combination will be enough and if that's enough to keep bc at bay, great! And if not then I can go up to the 20mg dose instead of chemo. Who knows.
But anyways I wanted to share the article along (with Domino's help of course!). There's a lot more articles posted in this journal that are all very recent, one on AIs, one on triple negative, etc. maybe later I will list them all if anyone else wants to see the full stories.
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Wow-thank you, Pebbles! I’m looking forward to checking the article out!
My MO gave me a 5 mg prescription (well 10, but she wants me to half it). She told me about the new study (incredible if 5 and 20 both have the same results, right!) You all might remember I was one of the unlucky ones with fairly horrendous SE’s on 20 mg. I haven’t started the 5 yet, due to a cording/swelling issue...but I have an appt. with her tomorrow. So, I’ll let y’all know what happens from there!
Hope all is well with all of you (and your fur babies!)
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Hi PebblesV, I would be interested in the article/study on AIs, if you get a a chance. Thanks,
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Pebbles V - Very interesting. Thanks for sharing. It's nice to have hopeful options. If you have an opportunity to post it, I would be interested in reading the article on AI's.
👍
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Faceforward / Appyfan - I'll see if I can take pics and post tonight!
SugarMaple - yes I totally remember and thought of you when I saw the article. 5mg may be just right for youaccording to the study. Best of luck healing more!
Dani - congrats on joining a gym! That’s a huge first step. How fun that you and your sis will do it together
I've been doing fine on 10mg so far although I do think it's harder to lose weight on tamoxifen. I also am no longer a night owl - I guess it's good I monk out around 10:30pm now? I sleep more than I did before.
For anyone who needs a mid-week smile:
Or two...
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I have been on this site lurking for several months since diagnosis, treatment and post treatment. However, rarely if ever do I post. I just love the support you all give to each other. But truth be told, I really come back everyday for the pictures of the pets. They are just adorable. Can't get enough of Domino and darn I can't remember the back and white pup's sorry. I apologize, but they are adorable and look so happy.
Thanks bunches for all of you. You definitely are a spirit lifters.
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Glad you found us, Julesm59. You’re right, this is a special group - lurkers are welcome! Domino, Tucker and the other furfriends are the icing on the cake.
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couldn't resist posting my new grand Dog! I too am lurking, I was taken off Anastozole in November, started exemestane in December. Appreciate all the support and insights! 0 -
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bennybear,
Your black lab puppy is so cute!
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Thanks for posting the article Pebbles.
Ergregious I am mostly eating well. I think maybe it's the stress? I started using Rogaine and will get some Biotin.
I have been on 10mh of Tamoxifen and doing ok. Not sure if hair loss is Tamoxifen related or a combo of my current radiation treatments and maybe the body stress from surgery. My migraines have come back to visit even though I didn't invite them....so rude! lol. I have joint pain occasionally and my MO said that joint pain isn't normally a side effect ( I don't believe him) but that it's not impossible to have that side effect and with time it should go away.
Wishing you all well
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I would also like to see the articles on AI's.....
I recently stopped taking Femara.......insane side effects.......
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Radiation can make your hair thin. Mine fell out by the handful and it took 2 years to get it back to its healthy, shiny, bouncy self. If you get muscle cramps, or joint aches, try the magnesium. I even found magnesium soap called "Grandpa's Soap," that I use when I feel achy. Keep moving to prevent joint aches and muscle cramps. The more we move, the more fluid and supple our joints and muscles become.
Always work with your doctors in deciding when to start hormone therapy. I believe that taking one treatment at a time, with some recovery opportunity in between, is the best way. I staggered my surgery, rads, oopherectomy/hysterectomy, and Tamoxifen, to give my body a chance to recover.
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cutest gran dog ever Bennybear
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aw thanks! One more 😄 I found the biotin helping my hair and the switch to exemestane. I too would like to see the articles on the AIs, please and thanks!
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