Tamoxifen

JacquiAL

Hi,

I'm 63 and couldn't tolerate Femara.  My Onc put me on Tamoxifen instead of trying the two other IAs thinking I would have the same reaction to them.  Just wonder if there are others in the "Older" Forum that are on Tamoxifen and if so,  how are you feeling about it and how are you doing with it?

Thanks.

Jacqui

shasta

Hi,Jacqui,

   I have been taking Femara for about three years.Had lots of side effects,thought I was going to have to get a wheelchair, but finally got passed most of them.My insurance company just denied the last six months of reimbusements for Femara.($2500.00)I am going to ask oncologist for Tamoxifen prescription when my Femara runs out as I can afford it myself..(Generic) I understand it is just as good as the other meds.You won't have se of osteoporosis as I developed on the Femara..I hope I don't have to go thru se of tamoxifin as my body adjusts to it.! I am 72.Let us know how you get along with it.I'm glad there is the option of the tamoxifin generic,otherwise I would be left without anything to take! lots of luck to you.

JacquiAL

Hi Shasta,

I'm sorry you had so many negative side effects with Femara.  Shame on your insurance company for denying your last six months but maybe it is a blessing in disguise.  I started Tamoxifen on 2/10/10 and the only side effect I've had is very dry skin on my face.  My dermatologist prescribed Retin A.  My insurance company approved it because I am not using it for cosmetic purposes so the cost is $15.00.  It would be $89.00 without the approval but it is a large tube and I think it will last me at least four months or so.  She also recommended Cetaphil which is over the counter and inexpensive.

I have mild osteopenia.  I've read Tamoxifen actually helps with bone loss but there are so many studies it is hard to sort through them.  I will ask my oncologist when I see him in June. I take 1200mg of calcium and 800iu of Vitamin D a day.  My gyn thinks that is the right amount for the osteopenia.

I am actually taking Tamoxifen not a generic and it is $15.00 a month with insurance.

I hope you don't have any side effects with Tamoxifen.  Let me know how you do with it. 

My best to you.

Jacqui

shasta

Hi,Jacqui,

   Thank you for answering back.

I think the tamoxifen is a blessing in disguise ,too. I have about 2-3 weeks left of the Femara.Oncologist's nurse assured me it was just as good as Femara,etc.,My Oncologist informed me that she thought the protocol was calling now for more than 5 years,.so,I need to get a med I can afford.My daughter is a lvn,works with my primary doctor,(20years)and she said she and he thought I would be given the tamoxifen after txs..They think because it has a long ,proven,history with good results that I should take it.,so,that makes it a plus in my books! The Femara  caused me to have dry skin but not to bad.I also don't seem to heal as good since taking Femara.Bruises all time.Might be my age tho.I have always been a worker,but that seems to have left me too.lol I stay at the computer a lot.This website has been a blessing to me! Stay in touch.Nell

JacquiAL

Hi Nell,

My Oncologist told me I would be on Tamoxifen for five years.  I know some women are on it or AIs longer but I don't know how they decide that.  I understand also that Tamoxifen has been around for a long time so I feel comfortable taking it.

I'm hoping you have less bruising when you are no longer taking the Femara.  I have always bruised fairly easily but haven't noticed it getting any worse with the Tamoxifen.

I don't have the same level of energy as I did in the past either. I keep hoping I will get it back.  I was worried that the Tamoxifen would make it worse but it hasn't.  Maybe once you are off the Femara you will feel like you can do more.

Did you have chemo and radiation?  I only had radiation.  The Oncotype test indicated that chemo would be slightly detrimental to me so my Oncologist didn't recommend it.  I don't know if they had that test in 2006. 

I agree about this website.  I have learned so much from it.

Jacqui 

meau28

Dear Jacqui,

I have been on Tamoxifen for about 6 months and have tolerasted it rather well. Dry skin, yes, sometimes severe foot and leg cramps at night and fatigue but I chalk that up to having to surgeries within 3 weeks or each other and it takes awhile for the general anesthesia to leave the body cells. No hot flashes which are the most common complaint and yes, I feel good that Tamoxifen protects one from bone loss. I am 59 years old.

meau

JacquiAL

Hi Meau,

Did your foot and leg cramps start right away or did it take awhile?  I've read that they can be a side effect and that exercising will help.

I haven't had any hot flashes either maybe because I had them when I went through menopause - they were mild and didn't last very long.

I had a second surgery a week & a half after the first to get clear margins and to take extra lymph nodes.

I'm glad you are tolerating the medication well. Please let me know how you are continuing to do on the medication.

Jacqui

meau28

Dear Jacqui,

My foot pain/leg cramps started within the first 2 weeks of my taking Tamoxifen. And they are really painfull!  They only occur at night but boy are they strong - nothing I seem to do stops themI also have the side effect of very diminished bladder control - yes, that is also a side effect. No amount of Kagels have helped. And yes, I did not have hot flashes to any real degree throughout menopause either so maybe that's why I have not experienced any - well, maybe one or two - on the Tamoxifen. I had "knock me down, bone deep" fatigue the first few months but that has lessened the longer I take it. and yes, Tamoxifen protects against bone loss because it mimics estrogen in other body parts as a protector but inhibits it in ER+ breast tissue.

Dry skin but not terribly bad except arms and hands.

Meau

chalex

Hi,

I am 39 years old premenapausal. Started tamoxifen about 6 weeks ago. I was on chemo from Sept until Jan. My last period was in Nov. I started getting hot flashes when I was on chemo. About 3 weeks ago I got a very heavy period and it was to the point I was in the washroom changing every hour for the first two days (sorry for the TMI) but I wanted to know if anyone else has had this experience or has info. they could share about tamoxifen and periods.Also I don't et any hot flashes on tamox.

Cheers,

Chalex 

JacquiAL

Hi Meau,

I'm so sorry you have having those side effects.  Have you talked to your doctor about medications that might help?  I don't like to take meds but I do it if it will improve my quality of life.  Also, I have read that taking Tamoxifen at a different time of day helps some women.  I take mine (20 mg) in the morning.  Same women takes theirs at night or half in the morning and half at night.  Maybe your doctor could give you information about that also. 

I'm glad you are not having hot flashes.  Cetaphil works well for dryness on the body.  It is inexpensive and over the counter. 

I'm hoping your side effects go away the longer you are on Tamoxifen.  I've read that they do sometimes go away.

Jacqui 

JacquiAL

Hi Chalex,

I am post menopausal so don't have any information about your situation. You might would to post your message in the Forum "Hormonal Therapy - Before, During and After".  There are many posts in that Forum about Tamoxifen and premenopausal women.

I'm glad you aren't having any hot flashes.

Jacqui

Clo40

I am 69 dx with bc stage 1 grade 11.  Had lumpectomy and rads for 6 weeks.  My onc put me on Arimidex wich I took for 3 months, the joint and muscles pains were awful and she has just changed me to Tamoxifen.  I'm very concerned about this drug due to the potential side effects such as bloods clots, stokes and cancer of the uterus just to name a few.  Can anyone tell me if they have been on Tamo for an extended period of time and have had any of these problems.

Thanks,

Clo

juli0212

I am 51 years old and have been on tamoxifen since Feb. 2007.  I have had calf pains, and have had the calves ultrasounded (word?), they were fine, no blood clots.  I have had very minimal side effects being thrust into early menopause (taxol/Oct. 2006) in one day.  Yep, hot flashes. Yep, night sweats.  No mood swings.  A 'tad' concern now that the estradiol levels have spiked after showing post-menopausal for years, now showing PRE-menopausal.  We retested today, so we'll see if that's a lab error, or something is running amok with my estrogen (yes, EST+, so it's a concern).  My oncologist has said that when he switches me to an aromatase inhibitor, it will be for a minimum of 7 years.  I have bone issues (parathyroid/thyroid/calcium/vitamin d deficiencies on and off), so he's putting OFF the AI (thankfully) until absolutely necessary.  Tamox is much better on bones than an AI (which is recommended for POST-menopausal women).  I was put on tamoxifen due to being totally pre-menopausal before chemo treatments.  Just my story~juli

Yself

Have been on Tamoxifen for about 4 years. Am almost 75 years old. Was on Aromason and having a lot of pain, so was switched to Tamoxifen. Have every side effect listed for this drug including the latest--hip pain. At least I only read that one recently, so I think it is new. Leg cramps started some time after I began taking it. Am very fatigued, short of breath. Have lower back pain and now my arm bones are aching. Vision is not as good as it once was and having a cataract removed did not improve my vision. I've heard some say these side effects can be permanent. I sure hope they are not. My hands hurt a lot most of the time. Doc says it's neuropathy/arthritis, but they didn't begin to hurt until after I had been taking this drug for some time. Am seriously considering taking myself off this drug. Period.

Yself

New post. I managed to get hold of a copy of Arthritis Today, Jan/Feb 2008 and was stunned to read that "Breast cancer drugs can unleash RA." This has been known for at least two years!! In the meantime, my joint pain has become so bad that I am using a cane much of the time. My oncologist has been insisting this pain was caused from having neuropathy and arthritis. I do not agree. It is the Tamoxifen. I belong to a support group and have heard the same thing from other cancer survivors on Tamoxifen. I'm afraid I am too late. I think this is permanent. I got off it once before and there was no difference. I'm now taking 2,000 units a day of Extra-strength Tylenol. Hope some day I can walk again without so much pain.

Yself

Most of the women I've talked to, including me, did not start having severe joint pain until they had been on Tamoxifen for a couple of years. Be careful. I'm afraid mine is permanent. Try to read the article in Arthritis Today Jan/Feb 2008 titled The Breast & the Beast Breast cancer drugs may unleash RA. This is very sad. We are finding out too late.

Yself

Are you all aware that WalMart sells a 90-day supply of Tamoxifen for $24.10? I just got a bill a 90-day supply from Medco along with a bill for $44.13. Very disappointing. I told them about WalMart, but they did this anyway knowing I could not return the meds. Be careful.

imbell

I am 67. Diagnosed 2006, recurrence 2009. Was on Arimidex at the time. Won't go on about tx but was put on Tamoxifen after chemo. Don't have a uterus and haven't had hot flashes Would like a few as living in Winnipeg (the other Siberia). Have had severe chest pain which goes all the way through to the back but not constant. Have been on Tamox 3 months with no progression. I am stage IV so have started with vitamins, b complex, vitamin D /calciumand seem to be a little better. I've had costal chondritis for years (pain in the joints) so this is nothing new.

Cleb

Please help me!  I'm 57 and just finished round 35 of radiation a week ago yesterday.  I have been on tamoxifen 1 week, today.  I can't handle ANY more side effects.  FACIAL HAIR, yet I still have some baldness and stopped chemo in mid January.  I have osteopenia and was to take one of those drugs to build up bone loss and was then told by onc that he felt I should take the tamoxifen rather than drug for bone loss!  I'M TRIPLE NEGATIVE.  I know I sound petty but I have really aged from my 8 month journey of finding a tumor to finishing chemo & rads.  My onc said that this might possibly stave off a secondary cancer from forming in other breast since I have metaplastic features.  If my hair doesn't thicken up pretty soon I think I'll be quitting tamoxifen regardless.  Ready to scream!  My 78 year old mom also has bc but had mastectomy only.  Now we are in the middle of the waiting game to see if it has metastasized to uterine area.  I care for her full time including while I was going through my treatment.  I love her so and don't know if I can handle another "you have cancer" for her or me.  Please pray and offer any tidbits you may know about tamoxifen.

Kiwikiwi

HI, I am 56 years old and have been on Tamoxifen for 9 months. I have gained 30 lbs and am not a big eater. I was 130 lbs 9 months ago and now I am 160 lbs. If anything I eat less. They say carbs go straight to fat when you are on Tamoxifen so am trying to eat way less of those but it doesn't matter so far. I had really bad vein and bone pain at first so I did some research and found that taking half dose in morning with breakfast and half at night with dinner helped a lot. That way you don't get all the pain at once. I don't like being on Tamoxifen one bit, but what are the alternatives??

vote4jc

I was diagnosed with DCIS in July, 2011, had lumpectomy, Aug 2011 followed by 6 1/2 wks or 33 radiation treatments. Now on Tamoxifin (for almost 2 months now). Doing ok. Have to be real careful or have leg cramps but had some of that before. Haven't noticed any other side effects other than those awful "burn me to the ground" hot flashes! What in the world can one do to help control that? Onc gave me a "pill" but it caused 3 days of migraine headaches so not taking them.

Denise2730

Posted in wrong forum.

fadheir

I am 69 and on tamoxifen for 4 years,

 i am experiencing leg edema and doctor advice was to reduce salt in food and drink plenty of water

CancerStinks

I no longer use soap due to how drying it can be:  I now use Johnsons baby no more tears body and hair and it get me clean enough.  hope this helps.  

CancerStinks

I am almost finished with rads and need to go to the MO next.  I have been able to educate myself enough to feel comfortable with my decisions up to this point, but now am just petrified about Tamoxifen etc.  What questions should I ask the MO when we meet next week?  Any and all insights are appreciated.  I still have periods (age 54)  and thought tamoxifen was all about killing my estrogen and throwing me into menopause, but the RO said something that made me think that estrogen is only a small part of what this next step is about.  I can't remember what she said now! My head hurts thinking about this next step!  The RO said that once my numbers are put into the algoritham that I might not even need the MO, but I can't imagine that I'll have that good fortune.