Tamoxifen Q, not sure if this has been asked...

MrsH

I notice a lot of people say they try Tamoxifen and then they stop taking it because they cannot handle the SE's. If it's so valuable, particularly to women with E+ tumors, how is it that there isn't a way to somehow manage the TE's to get the benefit? It has been recommended to me and I have been "scolded" by at least 2 physicians when I suggest that the SE's might be too much for me to handle. They remind me that I am lucky I have this as an option, and I don't disagree, but I see so many women say they stop taking it because the SE's are intolerable - 2 or 3 months in. Why do people give up on Tamoxifen so easily? Is there something else that is then given, or do you just go back to accepting your stats for recurrence? I find it so difficult to find the right physicians who think like I do. I had a 2nd opinion with an onc the other day who told me to get an oophorectomy if I didn't want to deal with the side effects. He also said if I think it will make me too moody and/or depressed, maybe it's because I was moody and/or depressed to begin with. Grrrrr... Onc #1, when I asked about oophorectomy a month ago said to not even consider it because if the SE's are bad, you can't go back. I'm overwhelemd and tired of constantly trying to analyze my options and working to figure out the best course of action when there are so many unknown factors. Sigh... I'm sure I'm not alone :-)

SpecialK

mrsh - I am not on Tamoxifen (I am post-menopausal and on an AI) but it seems to me that the usual scenario is to try Tamoxifen, then if the SEs are intolerable, some docs recommend Lupron injections to suppress the ovaries and an AI instead.  The last alternative would be an ooph - because it is not reversible - and because estrogen is beneficial to your bones and heart if you are pre-menopausal.  Removing the source of beneficial estrogen brings its own set of potential SEs - osteoporosis and high cholesterol among them, along with the same SEs you would get from Tamoxifen - hot flashes, mood swings, depression.  Something to consider is also that many drug manufacturers make the generics of both Tamoxifen and the three AI - Arimidex, Aromasin and Femara.  You may have SEs on the drug from one manufacturer, but not another because they all use different filler ingredients.  I think before one gives up on Tamoxifen it might be  good idea to try several manufacturers - most chain pharmacies can order different manufacturers so that they can be tried.  I started on Femara and did reasonably well, but developed a trigger thumb on my dominant hand.  My onc switched me to Arimidex and I had less joint pain and the trigger thumb went away.  Some docs will give you additional drugs to offset some SEs - some people have success tolerating Tamoxifen if they also take Effexor. I have found less joint pain going gluten-free, taking Glucosamine/Condroitin, and a daily Claritin. The problem with estrogen controlling drug side effects is that it is an individual decision as to whether you can tolerate risk if you don't take the drug, or the side effects if you do.  No doctor can give you unequivocal answers in this situation. 

proudtospin

 Do not assume that you will have side effects, we are all dif.  Me been on aromasin for over 4 years with no side effects that I can ID to the med.  We are all dif, not sure why so many women give up on the mids, I think it is very important part of our treatment

fredntan

I don't have SE from Tamox. I don't post on tamoxifen boards because I don't have problems with it.

GG27

I had terrible SE's from Tamoxifen & every AI my onco tried to give me.  But I wasn't about to give up even though she said to me "well there are just some women who can't tolerate the SE's", like I had any control over them.  But I finally discovered that I have severe allergies to most of the fillers used.  When I finally discovered what it was I couldn't take it was easy to get the pharmacist to check with the drug companies.  I can take APO tamoxifen.  I have been on it for 1 1/2 years now & I do get hot flashes, but I take gabapentin to control them.  But the headaches, severe joint pain, nausea & other SE's are gone.

I wasn't one of those who was just going to give up & accept my statistics for recurrence.  GG

Lastchild13

I have been taking Tamoxifen since July 2012 and the side effects that I have are bothersome but I just deal with them. I did not want to take Tamox at first and asked my onc about every possible alternative and I googled myself to death reading the stories about this med. I finally thought that I would give it a try and it really is not too bad. The biggest obstacle I have had are the hot flashes/chills and I feel a bit more tired than usual. The SE's seem to come and go for me -- not a constant. On the upside, I have not gained any weight on this med I have actually lost some. If the SE are too much you can always stop taking it.

MrsH

Great insight, thank you! So how do you get info on the fillers? I have some issues with food and chemical sensitivities so it would probably help me to know in advance what fillers are used.



Thank you very much :-)

GG27

MrsH, When I discovered that I had allergies to lactose, not like lactose intolerent, an actual allergy to it, I went & spoke to the pharmacist at the Cancer agency & she was the one who told me that maybe there was a filler that I was having problems with. 

She got me the lists of the all the ingredients in all of the brands of tamoxifen & I went through them all.  When I discovered that lactic acid was the main filler in all but one of them, I figured I was onto something.  My onco ordered the APO brand for me & the rest is history.  Now I'm screwed if APO ever changes their fillers.  Good luck, GG

MrsH

GG, that sounds like something I will need to do. Do I ask the onc for the info? Or is there a way to find the info out online? Thank you:-)

Anonymous

I've been on it for nearly a year and have had little to no side effects. I think the vast majority of women on tamox don't have any problems with it--otherwise, I'm guessing it wouldn't be rx'd.  I take effexor to help with hot flashes, and I guess it does--but I've gained no weight, and because I go to yoga and am very active anyway, I don't notice joint pain, if I have anyway.

Claire

MrsH

Thanks Claire, sometimes I feel like when I read things on this board (and sometimes I read posts that don't even pertain to me) I get it stuck in my head that that's what could happen to me... I think there is a lot of valuable imformation here, but at the same, I worry I'll convince myself - say for example, I won't be able to tolerate SE's - when in fact, as you say, maybe most people don't have issues, but if you're not having issues, you may not be here posting. Does that make any sense?! LOL!

april485

I hope you are one of the luck ones without the SE's and I hope I am too! I fear these drugs more than I do rads. But, I plan to try all of them if I have to for the peace of mind. I am HIGHLY ER/PR positive so I really need the drugs. (>95%ER+ and >60%PR+ which indicates my cancer LOVES these hormones) so I will be trying my best to deal with the SE's they may give me. I already have some arthritis so I am used to that. I also have had some severe hot flashes for the last year and have no idea why as I didn't have any near as bad when I went through menopause! So, once again, used to that. I am most worried about the heart problems and bone thinning I guess but once again, close monitoring will be available I assume.

Best of luck on the tamox!

PeggySull

Hi, some SEs can be life threatening. A good friend of mine got a pulmonary embolism and the oncol said it was due to the tamoxifen and ordered her off. This is an extreme case, but I think others have relatively minor SE s they are afraid will worsen. Every drug, like every surgery carries risks we each have to weigh against the benefits.



Peggy

Mardibra

Ive been on tamox since July 2012 and have not had any major issues.  Slight joint aches in my feet for about one month but then they disappeared.  The hot flashes were the worst!  Onc prescribed Effexor and *poof* hot flashes were gone.  So, as of today I have no SE's.  Give it a try and see how it works for you.  I do believe some gals get some bad SE's but i think most dont have problems.  Just my guess.

ProudMom_Wife

MrsH - I too had issues with SEs and was starting to think I needed to think about ooph or Lupron shots.  Then by accident my pharmacy refilled by  prescription and all of a sudden the worse SEs subsided.  I couldn't figure it out.  Then I noticed that they filled my Rx with a different manufacturer.  I found this website http://www.drugs.com/imprints.php?action=search&drugname=tamoxifen where you can look at inactive ingredients by manufacturer for tamoxifen.  Yep, I was allergic to some fillers that some manufacturers use.  So now I always specify a specific manufacturer when I refill my Rx and the SEs are very manageable for me.  In addition I take supplements to help, such as B6/B12 and Magnesium with occasional joint pain and leg cramps and I make sure to exercise and do yoga.  The combination is working for me, but everyone is different.  Still get emotional easy, but now my family thinks it is kinda cute that I get all teary eyed over silly things.

Anonymous

I guess after surviving 2 months of AC and 12 weeks of Taxol plus 33 rads, I thought taking a pill every day would be easy by comparison!  Luckily it is.  I didn't dread taking it other than thinking I would gain weight, but that hasn't happened.

I have read that if you do have SE then you could try swapping to another drug manufacturer. That seems to be helpful for some.

I would like to think you'll be in the statistics of a lot of women-no side effects or mild, manageable ones. Let us know!

Claire

GG27

MrsH,  I think Proudmom gave you a good link to check drugs, but I talked to my Onco about it & she had the pharmacist call me.  But I'm in Canada & we don't get our tamox etc from a drug store, we get it directly from the hospital pharmacy as it's considered part of our treatment.

Because you've researched all of this, you will probably be one of the ones that breezes through with no SE's!! Let's keep our fingers crossed for you!!  GG

tuxtails

I had an appt with my Oncologist this week, and she said that I should take Tamoxifen, she then told me the benefits vs the fact that it could cause uterine carcinoma, plus the daily se's. If I have se's I could go on effexor also. I have done research some research with natural/alternatives and found that studies show flax seeds to be as effective, plus you get the benefits of the Omega 3. Might sound crazy, but I am doing it and I will hope like hell it works! Also incorporating high dose of Vitamin D and greens.

I think it is a personal choice, what works for some does not work for others....and I might be kicking myself in the pants if the cancer comes back!

I feel for the individuals that are having bad se's...hope it get better for you soon.

Tux

dvbreeb1

Thank you all who've posted with "not so bad" SE experiences. I'm starting Tamox in three weeks and have been researching (i.e. reading online horror stories) way too much. It's really reassuring to hear from folks who are finding it tolerable-to-not a big deal.