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Tamoxifen and Zometa

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi,

I am postmenopausal but my Onc put me on Tamoxifen because I couldn't tolerate Femara and he thought I would have the same problems with the two other AIs. I will also be getting an infusion of Zometa every six months for three years to prevent bone mets (I have mild osteopenia). My questions are: 1) are there any others postmenopausal that are on Tamoxifen and how are you doing on it? and 2) are there others on Zometa to prevent mets to bones.

Thank you.

Jacqui

SusaninKailua
Posts: 6
Joined: Mar 2010

Hi Jacqui,
I am not postmenopausal but am in a clinical trial and was randomized into the Zoledronic acid (Zometa) arm and receive it with my chemo. once a month. I will take it monthly for 6 months, then once every 3 months for 2.5 years.

I also take additional calcium and vitD daily throughout the trial. I have had two infusions and so far, no side effect.

I'll keep you posted! Interestingly enough, I asked my Dr. if I could get Zometa at a later time, without being in the trail and was told "no" because it was considered "standard of care" (yet) for breast cancer.

All the best and much Aloha,
SusaninKailua

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi Susan,

Thanks for replying to my post. I'm glad you aren't having any side effects. I appreciate you keeping me posted.

My Onc received an ok from my insurance company for Zometa. He did tell me that some insurance companies will approve it and some won't. My onc also told me that Zometa cuts the risk of bone mets by 40% so hopefully all insurance companies will start to approve it soon.

My best to you.

Jacqui

marilyndbk's picture
marilyndbk
Posts: 238
Joined: Sep 2009

Hi Jacqui--I don't have much info except I am on 2nd month of taking Femara. I was hesitant to start taking it because after my 1st dx in 2001 I was put on Tamoxifen and had problems and went off Tamox after 4 1/2 yrs. I had heart problems and they couldn't find anything else so recomended stopping Tamox. So far the only side effects I have noticed is more hot flashes. I am sure you will get an answer from someone with your situation. I have received so much support and info from the people on this board. Take care. Marilyn

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi Marilyn,

Thanks for responding to my post.

I'm so sorry that you developed heart problems. Did your heart problems go away after you stopped the Tamoxifen?

I'm glad you are only having the one side effect from the Femara.

I haven't posted much but I am learning a lot from reading the other posts.

My best to you.

Jaacqui

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Hi Jacqui
I was postmenopausal when I went on Tamoxifen. I was 47 when I naturally went into sudden menopause. Hot flashes, leg cramps, trouble sleeping, moodiness. Took hormone replacement therapy for 4 years which didn't help much, so stopped it. Menopause symptoms continued. Then I started Tamoxifen in November 2009, at the age of 58. Whew, more hot flashes, longer sweats, leg cramps came back. Now I have started taking Effexor to mitigate the side effects of Tamoxifen! I HATE taking a drug to be able to take a different drug! Before breast cancer I only took one pill; a low dose of Lipitor to keep my cholesteral down. But since I had a gall stone removed from my common bile duct, my cholesteral has been dropping by itself and I may be able to discontinue the Lipitor! Pills, pills, pills, ugh. But I'm glad they're available. I hope to wean off the Effexor eventually, when it stops the hot flashes for a period of time.

Frankly, I'd rather be dealing with hot flashes than bone pain that may never disappear, caused by the AIs. My oncologist said that Tamoxifen is the only drug studied for effectiveness against DCIS recurrance, so that is my only available drug.
~~Connie~~

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi Connie,

Thanks so much for replying to my post. I'm sorry we both have to be here but am glad I found another postmenopausal woman that is on Tamoxifen. I was suprised when my Onc put me on it because I had read that the normal course was to try the 2 other AIs to see if they work before being putting postmenopausal women on Tamoxifen. I had IDC so all three AIs were an option for me. I have been on it for about 5 weeks now and have only noticed fatigue on a few days and getting colder than usual at certain times.

How long did it take your side effects to appear?

I don't like to take meds at all but have come to terms with that but can understand not wanting to take a drug to combat the side effects of another drug. The drugs I was taking before bc had no side effects so I'm having a little trouble adjusting to taking or preparing to take medications that have long lists of potentional side effects even if most of the side effects are rare. I volunteer with a woman who said she is thankful that medications are there for us because we are better with them than without them. I guess that is the best way to look at it.

Thanks again, Connie.

Jacqui

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Hi again, Jacqui. It only took about 3 days for the Tamoxifen to begin making the hot flashes/sweats harder and more frequent. Before Tamoxifen I could almost cause myself to have a hot flash by thinking about something even slightly troublesome. Like "let's see, am I fully prepared for teaching my 8 hour class tomorrow?" Poof. Hot flash. My gynecologist said the part of the brain that prepares us for action is also the part that sends out the message to produce hormones to stimulate the ovaries. I want my brain to QUIT that right now. The ovaries were done, apparently, 11 years ago! Give it up already, hypothalamus! :)

tgf's picture
tgf
Posts: 955
Joined: Mar 2009

Hi ... I'm 66 and started on tamoxifen about 2 months ago and had no problems. I did have to have my anti-depressant changed since I was on zoloft and wellbutrin ... and now take effexor. The change went smoothly and all is well. I take my effexor in the morning along with 10 mg of tamoxifen ... then I take another 10 mg. of tamoxifen before bed ... and I haven't really had and HOT flashes ... only a few "warm" flashes which are tolerable.

I also have osteoporosis (sp?) so have been taking fosomax for several years and had no problems there either.

So far so good.

hugs.
Teena

teresa41's picture
teresa41
Posts: 453
Joined: Jun 2009

i started tamoxifen dec 4, 2009 im 42 i havent had any hot flashes or any problems.

wishing you the best!

teresa

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi Connie,

It's great that you have a sense of humor about the hot flashes.

Thanks for the additional information.

Jacqui

Dot53
Posts: 236
Joined: Nov 2009

I am also post menopausal and I am also on Tamoxifen b/c I couldn't tolerate Armidex or Femara. My oncologist has not mentioned the Zometa but I have rheumatoid arthritis so I don't know what to expect as far as side effects as I just started taking it..

prv
Posts: 107
Joined: Jun 2009

I am on arimedex (started this week) and zometa (clinical trial as explained above) Only had two infusions of zometa so far - no side effects on either yet.
good luck,
prv

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi Dot,

Thanks for responding. Best wishes to you for no side effects from the Tamoxifen.

Jacqui

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi,

Thank you both for responding. I'm glad you are doing so well on Tamoxifen.

Jacqui

Miss Murphy's picture
Miss Murphy
Posts: 302
Joined: Feb 2010

Hi!

I'm also post menopausal - Dx two years ago and took Femara and then Arimidex for nearly 18 months total. I had severe muscle and joint pain with both drugs. My doctor switched me to Tamoxifen last October. Now I have hot flashes (but they seem to be getting better). In any case, I'd rather flash than have all the pain. Good luck to you with your treatment.

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Thank you for resonding. I'm glad the hot flashes are getting better.

My best to you.

Jacqui

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Just wishing you good luck Jaqui with your treatment!

Hugs, Leeza

ladysmith53
Posts: 6
Joined: Mar 2010

I started Femara 8/09, then developed carpel tunnel syndrom after 3-4 month on Femara, then in another month a very painful trigger thumb. It affected my ability to write or do any thing that required strengh in my right hand. (I'm right handed) I'm a nurse so I have to be able to use my hand or I am out of work. I stopped Femara 2/21/10, with plan to switch to Arimidex, then Aromasin, and Tamoxifen if need be. The carpel tunnel syndrome went away almost completely with the help of wrist braces at night, and the thumb is still pretty sore, about 75% better.

How long did it take for your pain to go away? Did you have carpel tunnel or trigger finger?

I agree 100%, I'd rather have flashes every hour than have pain and disability.

Healing Wishes to you!

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

I am pre-menapausal and estrogen negative so I can't comment on Tamoxifen, but I am on Zometa to prevent distant metastasis. I am not part of a clinical trial since my oncologist gives zometa as standard of care. I had flu-like symptoms with fever for the first infusion, but very mild symtoms my second time. Studies show that zometa helps to prevent not only bone mets but also mets to other organs, so I feel really good about taking it. I also take Vitamin D and a Calcium/Magnesium supplement every day. Good luck with all the medications. I hope your side effects are minimal.

Mimi

JacquiAL's picture
JacquiAL
Posts: 29
Joined: Feb 2010

Hi Mimi,

I'm glad your side effects are minimal now. Did your oncologist talk to you about any potential dental problems before you started the Zometa?

I am taking Vitamin D and Calcium/Magnesium everyday also. Did you have your Vitamin D level tested or are you taking the standard recommended dosage?

Jacqui

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

The dental problem with Zometa is rare but can be very serious. If you've had jaw problems in the past it is best to get a full dental check up before starting Zometa. My oncologist was pretty unconcerned about this side effect, but I have read about it. It's very unlikely to happen, but precautions are always good.

I did get my Vitamin D tested and I was classified as "insufficient." That's one step up from "deficient" apparently. Due to this my doc. recommended 1,000 to 2,000 IU of Vitamin D daily. That's pretty much the recommended dose for all women now these days anyway. I take 2,000 IUs and really believe it is helping me. There's more and more research about the efficacy of Vitamin D against breast cancer.

Hope all goes well with the zometa and the Tamoxifen.

Mimi

mickeymom
Posts: 117
Joined: Jul 2009

I'm starting Zometa in April and my oncologist had me get a full dental exam before she would set it up. My dentist knew all about Zometa and explained what can happen. It's pretty scary stuff but he said it is very rare and absolutely wasn't a worry for me. He said there are specific dental issues that might make it more of a risk, like if you need teeth removed. He did say he wanted me to be sure to keep my bi-annual appointments while I"m on Zometa so he can monitor things.

sausageroll's picture
sausageroll
Posts: 415
Joined: Dec 2008

I am on Femara and do have some side effects with that, but not with the Zometa. Like you I have an infusion every 6 months for 3 years and my Insurance company does cover it.

Good luck.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I just bumped this up as I am wondering how many are getting this propholactiaclly? I will start every 6 months in july. I will see my dentist first. As mimi said it is showing to prevent all forms of mets. I am not in a clinical trial but onc has alot of faith in it and he is a skeptical guy

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