Women on Ovarian Suppression + Hormonal Therapy Unite!
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Mellee - I hope Acupuncture will help you with the hot flashes and other SEs. It really helped me while I was on the Tamoxifen, especially with the hot flashes, insomnia, and to some extent, in the beginning, my bone/joint/spine pain. I've heard others comment that they had talked to "acupuncturists" and they were told that they couldn't help with hot flashes etc. So my suggestion would be, to find a licensed Acupuncturist that works mainly with cancer patients and is trained also in Integrative/Complementary Medicine. My Oncology Social Worker and also my Cancer Rehab PT both gave me some well qualified names to start with, perhaps your team could steer you in a trusted direction? I find it so terrifying to just "choose" someone randomly from a list on the internet. I was glad I asked. I think it saved me from having a few disappointing appts before I found the right one. My fingers are crossed for you that they will be helpful for ya.
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So happy to find this thread. I’ve just been Dx a new hormone positive IDC and will be switching from Tamoxifen to ovarian suppression + AI after I have my BMX and reconstruction. Tamoxifen has not been a walk in the park, hoping this new path is better
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I am on OS (Lupron + Arimadex). They started me on Tamox in early 2016. It was a doozie on my body, but I kept going for at least 8 months. We were trying to shrink the tumor. T made me feel like a very frail and old lady. I started getting the Lupron injections about the same time as the Tamox. My tumor did not shrink (nor grow) so I decided get it out of me and had surgery. About the time I had surgery I was already in chemical menopause so Oncologist put me on Arimadex. I have handled A much better than T. Tomorrow is my 1st Zometa infusion and I am SCARED. Anything medical wise that happens to me scares me now. I feel like I have PTSD from going through this journey and losing my father and one of my best friends to Cancer prior to my diagnosis. Anyhow, I am glad I found you ladies as I would not be anywhere near menopause had I not be thrown into it. It took me about 2 months to go into full on M. It was rough. I take Celexa and I also take Gabapentin. I realized the Gab helped with my hotflashes when I decided one day I did not need to take it. Now I now it helps. I take just one at bed time. I did not start taking it because of hotflashes. It was a "side effect" I discovered along the way. I also have lymphadema. It isn't a terrible case, but enough to where I do wear a compression sleeve when needed and I have a flexitouch that I use almost every night. Both items are used as preventative from anything progressing. Interestingly enough, I am pretty sure the lymphadema was caused by the radiation. Yay me being in that very small percentage of getting it from RADS
My Zometa is being prescribed as preventative. She is stating that it will help in the preventative ways of keeping anything getting to my bones. Again, like I said above, I'm scared and have been scared of doing it for almost a year now since she has suggested it. She also has mentioned taking out my ovaries, but that isn't something I am going to do at this point. My gut just tells me no. Any suggestions of preparing for the Zometa tomorrow? Drink lots of water and.......?? I will be at the hospital for a good bit tomorrow. Labs, Dr. Visit, Lupron shot, Zometa injection. I keep trying not to think about it. I get nauseous when they take my blood sometimes. They take so many vials. She tests my estrogen levels often. I get mams twice a year. I get a chest x-ray at least once a year. I feel like she is pro-active. How do you feel our ONC is with being proactive? 0 -
Thanks for bringing up this topic AYR, it's something I've been meaning to ask the group. Over the course of the past year, no one has ever tested my estrogen levels. Not once. Granted I have not started my injections yet, I am just coming off of Tamoxifen, but I'm curious, for the future, is that standard that they should be testing levels while on Lupron/Arimadex?
You mentioned you have your levels tested often. Is this through your MO or your PCP? Are they checking to make sure your ovaries are completely shutdown?
I have recently read some threads about the Lupron not completely shutting down the ovaries and those defeating the purpose.
Maybe you ladies all get your levels tested?
Any help on this front as I transition over to the land of OS is very much welcome.
PS: AYR1016 l'm sorry you have to be here on this thread, but like so many threads on BCO, I'm so thankful for everyone here. It looks like we are twins....same age @ dx. same affected breast. same staging. plus, I too have LE, in my treated breast. I didn't have it after my Lumpectomy, but after RADs it reared it's ugly head. So I'm with ya in that small percentage group. It's sucksville. Also, I think it's pretty normal to feel like we have PTSD after being on this journey. I've been in the land of Chronic Illness for most of my life, and I have dxd PTSD from much that I've been through. Cancer is a tough beast. Just know you're not alone. Wishing you good luck tomorrow with all your injections and appts. I hope all goes well.
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Spoonie,
How old are you? I didn't get my hormone levels tested before I did Zoladex + Aromasin because I hadn't had a period in months while doing chemo. But, my cancer was 95%ER/95%PR, so once I recovered from surgery, I started Zoladex + Aromasin (age 47). Fast forward four years to this spring -- my MO had me take a "Zoladex vacation" to see whether or not I was in menopause (age 51 -- the average age women become menopausal). I got my hormone levels tested, and I'm still not menopausal. So, it's back to the Zoladex. We'll test again...in a couple of years.
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Just turned 42 yesterday.
So maybe that explains it?
They don't test unless you've had Chemo and no periods for awhile?
I was able to choose no chemo due to my Oncotyype/Mammoprint results. I think, if I remember right, my cancer is 98% ER/85% PR.
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Nah, Spoonie, I think MO believed my ovaries were too messed up from chemo to determine -- for sure -- whether they were operating properly before I started Zoladex + Aromasin. So, she didn't bother testing then. But, once I turned 51, she was willing to test to see whether or not my hormone levels were consistent with being in menopause, and they weren't.
If you're interested in having your hormone levels tested, you could request it. Chances are your doctors are running other blood tests, whether for monitoring you for recurrence or monitoring your other health conditions. They don't need more blood samples to test your homone levels; your doctor can just request that your blood sample be tested for hormone levels as well.
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They started testing my hormone levels after giving me lupron to make sure I was fully suppressed. It's usually that or to see if someone is fully in menopause after chemo or other times when it's unclear.
I had my first zometa infusion about a month ago. They told me to take claritin or another antihistamine and to be proactive about ibuprofen. I felt pretty crappy the next day- kind of feverish and achy. The day after that was better, but the rest of the week was kind of a slow uphill climb from there. They told me many times that people have reactions the first time but then it's not so bad after, so hopefully the next time around won't be bad. And some people are fine the first time too. It was emotionally really hard to spend the day in the infusion center. There were delays because they had to wait for some of by bloodwork to come back and I had to wait around for a while. I hope everything goes as smoothly as possible.
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Spoonie, hello twin
I have had my levels checked from the get go, but we were also trying to "starve" the tumor to shrink it for a better outcome. What we did learn IMO was that tamoxifen did not seem to work for me. I often wonder what would have happened if she had twitched to Arimidex sooner if it would have shrunk. My MO does all my blood tests. I get Lupron injections every 10 weeks. I started out with every month and the injection doses increased in ML. My ovaries were hard to suppress. They put up a good fight. MO is hypervigilant about monitoring the levels to make sure everything is shut down. I'm going to subscribe to this thread. I feel like I've found my tribe .... that can better understand going through the O suppression journey. ❤0 -
I think all MOs are different, obviously, as I'm 43 and my doctor tested my hormone levels today to see if I'm pre- or post- menopausal. I have to go back in 2 weeks to talk about which medication I'm going to be on and for how long.
I hope all you ladies are doing good!!
~Katie💗
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Just saw my results from my hormone labs today and I'm post menopausal... I'm very surprised by this , I know chemo could cause this but didn't think it would truly put me into and through it. Hmmm explains the oh so wonderful hot flashes.
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I had my hormones checked twice... first time was shortly after I started Aromasin and the levels were low but some of them were not showing menopause. The next check was a month ago and all was menopausal. So I hope it stays that way.
Another thing is the SE's. I have painful joints in my hands and my heels hurt, my knees and elbows have started aching now too. My MO told me yesterday I may need to switch to Tamoxifen. For the time being I am taking Aromasin untill the next appointment in 3 weeks (I am on Herceptin, so I go every 3 weeks to see the MO)
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Hello everyone. Thanks for this informative thread.
Lately, I am very confused about the hormonal therapy I am going through.
Following four rounds of chemo and 16+4 rounds of radiation, my oncologists got me started tamoxifen. It has been three months since then and I have tolerated side effects relatively well by exercising 5 times a week.
Last week, for my approaching three months control, I had my blood tests. Even though my oncologists did not ask for it (!), as an ER+ BC patient, I thought I should have my estradiol levels checked as well. To my surprise, they were over the roof, raised to an unprecedented level (from 42 to 744!!!).
Even though I was aware of the fact that tamoxifen would raise estradiol levels as a side effect (since it hyper stimulates the ovaries I suppose), I was concerned if 20 mg of tamoxifen daily would be enough to block so much estrogen floating in my blood. With an air of panic, I sent messages to my oncologists.
One replied that “Oh no worries, we are not scared of estradiol in the blood. We were expecting such a rise due to tamoxifen. We are worried when it enters the cell and tamoxifen is there to block that. That is why I do not suggest you to start Lukrin right away, lets wait until your periods are back.”
The other one said that “Come right away to start your Lukrin shot. I have already told you even before you have started tamoxifen that tamoxifen + ovarian suppresion is better in your case.”
I believe the difference in between their view points stem from the fact that the former considers my case as a relatively low to intermediate risk, while the latter perceives it as an intermediate to high risk group. I really do not know which group I go into even though my high ki-67 score of 47 was the reason that convinced me to take chemo.
I am even more confused about which path to go through in face of all the related resources and trials out there, like SOFT.
And I am also planning to pause tamoxifen two years later in order to try out for pregnancy.
Is there anyone out there who had to go through a similar decision when it comes to their treatment options? Would you possibly share the information that led to your course of action?
Thank you so much for your kind replies in advance.
Best regards.
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Hi lovely ladies!
I haven't posted in a good while, but I should have been! I finished everything around 2 years ago, except for the Arimidex. And I have let the hot flashes just get worse and worse like a nightmare , without jumping on finding a remedy. That's not my usual way of dealing with things!
So next Monday, I have a plan for 2 things, based on ideas I got from reading these forums....
1. Call the amazing acupuncture lady at the Rocky Mt Cancer Center in Boulder. She was amazing during my chemo! I need to ask her if she can do anything about the hot flashes.
2. Leave a message for my oncologist, and ask her about the GABAPENTIN. I never heard of that. I've read several messages here from women who say that has helped with their sweating.
I'm leaving on a choir trip to Amsterdam in two weeks! It would be lovely if I can get the sweating a little better.
Any ideas?
Thank you, Ladies!
Best wishes
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Spoonie, they wouldn't be checking your estrogen levels while you're on tamoxifen. But if you're switching to an AI, then it is really important, because AIs don't work if your estrogen levels are too high. My MO started testing my levels with the estradiol ultrasensitive test right before I started my Zoladex shots, and tested me again at my second shot and third to make sure my levels were under 10 pg/mL. I got my fourth shot last week and only now am I starting my AI (exemestane).
Parrhesia, I went through the same freakout when I had my estrogen check before starting my ovarian suppression shots. My estrogen level was 592. My MO explained that tamoxifen blocks the estrogen receptors in breast tissue and in any breast cancer cells that may be left (no matter where they are in the body). But tamoxifen is actually pro-estrogen in many other parts of the body, which is not a bad thing and doesn't have an impact on your breast cancer recurrence risk. So the high levels sound bad because you're thinking "estrogen is bad!," but it's normal on tamoxifen and not something to worry about. FYI: when they retested me a month after my first shot, my levels had already gone down to under 2. For me, the shot shut down my ovaries really quick.
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Hi Katie! I feel you on the hot flashes. I've started carrying a rechargeable handheld fan with me lol. I have no problem whipping it out in public!
B2alicia, in addition to gabapentin for hot flashes my MO just told me about something called oxybutinin. I'm not going to start either at this time because my hot flashes are uncomfortable but not intolerable. I take Lexapro (an antidepressant), which is probably helping. According to this study, SSRIs/SNRIs reduce hot flash symptoms by as much as 65% compared to placebo: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5482277/
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Hi Mellee!
Is this the fan you have? The 1st setting is very quiet, and i can run it in church up in the choir loft!
I also keep these 3 sweat bands with my choir robe and wear one of them too
Thanks for the info about the other medicines! I'll ask my oncologist about those also.
Wonderful tips!
Thank you so much.
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I didn't think about having a fan in my purse. The last time I had a hand held fan it was one that spritzed water when my son played baseball. It would be way to big for purse. Thanks b2alicia. I'm in Texas, so it gets HOT.
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I sure understand, Ayr! I was so happy to find out about this little gem. And a nice thing about it is that you recharge it by plugging it in to the USB of your laptop, or whatever.
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I’ve been on Tamoxifen for almost 3 years now, but was just diagnosed with a new highly ER+/PR+ IDC. After my upcoming BMX and reconstruction, my MO is switching me to ovarian suppression + AI. Have any of you switched from Tamoxifen to OS + AI and if so, how different are the side effects?
I already have a lot of side effects on Tamoxifen including night sweats, joint and muscle aches, digestive issues, etc.
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I just ordered the fan. Can't wait to get it.
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Hi,
Im extremely nervous that I'm still getting a period does that mean that lupron and anastrozole are not working? Ive had 4 shots and only missed a period the second month while on the shot. Sadly today I got my period. The shot I received for the month of may (4th shot) was a double dose because they knew that I was still getting my period so they up'ed the dosage. Im due for my next shot on June 24th. Ive been taken anastrozole for 41 days now, Im concerned that because I'm getting a period does this mean the meds are not working? Also I just learned from this site that my hormones levels should have been checked at some point and they never have? Is this true.
Worried out of my mind that all of these months I haven't been protected the way I thought was I by the medicine I've been taking...
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Hi ladies -- Sooooo it's official, will be seeing my MO (appt to be determined but by July for sure) to start Lupron injections. She's putting in the order and once insurance approves it all, I'll schedule the appt and head in.
With that being said, what are important questions/tests/etc that should be asked/done before my first injection?
According to the msg from my MO, they don't test hormone levels until after I've been on Lupron for 2 months. And then I can start Arimadex. Does that sound normal standard of care?
Did anyone experience any difference between 3 month injections and monthly ones? I think it seems more logical in the beginning to go monthly in case there are unforseen side effects etc.
I'm super new to all of this, even with my lurking here, I feel like I have no idea what I should be researching/learning/asking for as I start this new part of the journey.
Any advice you care to offer to a newbie????
Thanks in advance.
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Have they done a dexa scan? I was surprised to find out that I have osteoporosis already (I'm 41), so we know we need to be proactive and monitor bone density carefully while I'm on this stuff. They also did not test my hormones until I'd been on lupron for 2 months I think. My MO wanted to make sure the monthly shot fully suppressed me and then switched me to 3 month. Before they gave the 3 month shot they warned me that some people can have more mood or hot flash side effects on the 3 month shot and for some people it doesn't last the entire 3 months, so they retest hormones at the end of the 3 months to make sure everything is still good and then adjust as needed. The 3 month shot is in a different suspension and is subcutaneous instead of IM. I had a painful lump on my belly from it for a week that made pants uncomfortable. I still have a lump (from what they said I think this is normal) but it doesn't hurt anymore. They told me they could switch the location of the shot if the belly is too painful. I might try a different spot next time, but otherwise I don't seem to have anything that is too much worse than the monthly one. I hear that some people get headaches from the lupron shot. I got more frequent headaches for a while when starting the hormone stuff but I'm not totally sure what it was related to and they have gotten better.
I hope you have a less miserable time on this routine.
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toyamjj,
I'm kind of surprised they would put you on an AI without knowing for sure you were in menopause. I would suggest calling your MO and asking if and when they will be checking. I was on Tamoxifen until I was in full menopause and then they switched me to AI. Keep us updated.
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spoonie77, I feel like the norm is building women up to the bigger dose by going a few months with the monthly. If I remember correctly, it is more cost effective as well. I will say this.....not all nurses are the same in giving the injection. If you find one you like, try to have that person do it every time. There is an art to it. I've had my back side hurt for at least a week from a nurse not giving the shot correctly. I tolerate the shot pretty well.
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OTmom, you are right...some dont last the 3 months. I forgot about that. My MO said it had to do with how fast your body metabolizes it (I think). I had no idea they gave Lupron shots in the belly. I get mine high on my upper back hip area. I always think they are going to give it in the rump. My nurses did say it could cause lumps. I always rub the area (it actually makes it feel better) to spread the med. One nurse told me heat helps it spread as well. So if I can get home to a heating pad, I do that as well. But, ya know....hot is not good for the flashes.
Ladies
I'm adding a pic of what my 3 month L injection looks like to give you an idea
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Ayr1016 I am so glad you posted that you get your 3 month Lupron shot in the upper back hip area - that is where I received my first one, too in April. After reading all the comments about the belly I was afraid that the nurse had done it wrong! I go back at the end of June for my 2nd one. Good tip about rubbing the site, I had not thought about that. Thanks!
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AutismMom1, another tip is always switch sides for the injection. I got mine on the left side this time and will get it on the right next time.
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Thanks for sharing the info about Luprin injections; my MO put me on Zoladex because of the SOFT study. She felt insurance would be more likely to cover Zoladex + Aromasin because they were used in the SOFT study.
I do the monthly Zoladex. It is a pill, not a liquid, that gets shot into my stomach. It doesn't leave a lump or a bruise or anything. The only complication arises is if the nurse hits a vein, at which point, a serious band-aid is needed.
Because it is a pill, the Zoladex syringe is big and scary-looking. The nurses always apologize before they inject me; it looks worse than it feels, I tell them.
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