on tamoxifen 1 month, going crazy help

LtotheK

I'm premenopausal (at least for now, age 40 but chemopaused) and haven't had any trouble with Tamoxifen...the hard thing about these drugs is, we are all just so different.

lbergara

Been on Tamox for almost a month now and I'm starting to experience some depression as well.  Not as extreme but enough to make me very, very concerned for myself.  I talked to my doctor about it, and he recommended an anti-depressant (Effexor......first dose taken today!).  Never been on anti-depressants in my entire life and thought I would be able to handle what I'm going thru now, just like I have everything else I've gone thru!  Not the case here for sure.  The research I've done confirms the benefits of being on Tamox are far better than not taking it so......................................I'll try the anti-depressant and go from there!

I pray you're able to figure something out.  :-)

starbeauty

lbergara - just wanted to let you know - I hit the same wall re. depression you did.  I took effexor about a week and found it actually worsened my symptoms.  I elected to ditch the effexor and increase my exercise to daily and about 40 minutes.  I can't say I could win a "happy" award - but I am truly doing better and feel a lot fewer "down" periods.  I will have been on Tamox 1 year in May... I think for some of us it starts to even out after a period of instability perhaps?

robynkk

Ibergara,

My oncologist prescribed Paxil when I was in my worst part of the Tamox reaction, I'd taken it for years but was happy to be off of it and lost 20 lbs just like THAT when I stopped taking it.  I actually only took it this time for about 4 days because when I stopped the tamox all of my side effects stopped and my life went back to normal.  The benefits for me are only about a 6% decrease in my chance for reoccurance so it's just not worth it for me.  I just hate that they prescribe pill after pill to combat the side effects.  Have you talked to your oncologist about stopping it?  Is he totally against it?  My prayers are with you, depression is a terrible thing and robs us of ourselves.  Keep us posted please.

xxoo robyn

1Athena1

robyn, Thank you for your good wishes and I hope you are doing well. I hadn't seen this thread since the last time I had posted.

I actually do take other medications, and am still on cancer treatment because I take a Zometa infusion every six months. However, the Tamoxifen was not possible for me.

Some who post here and elsewhere say that the SEs got better with time for them. Mine got worse. I put up with Tamoxifen for eighteen months. I really, really tried. I tried too hard and it pisses me off that I always overdo it. Tamoxifen helped to cost me two hospitalizations.

But that was just my experience, I hope people not on Tamoxifen don't assume that anyone else's experience wil be theirs. I am one who always avoids asking other people how they did on medications until I have had my own bout with them for that very reason. I have lost count of how many times someone tells me of an experience they had with a drug and I have the very opposite tale to tell.

What defines our response to Tamoxifen is many things, but here are some:

--Comorbidities

--Any other prescription or OTC medications you have to take

--Your metabolism. There are genetic expressions of enzymes that vary by person. The idea that CYP2D6 plays a meaningful role in Tamoxifen response vis-a-vis the cancer has been somewhat discredited, but enzymes also play a role in directing SEs.

--Your brain chemistry 

In other words, it is impossible to tell how person B will respond to Tamoxifen based on person As experience. Statistics are totally useless in this case because Tamoxifen response in cancer studies is only measured in terms of cancer recurrence. In order for side effects to be reported and be somewhat reliable, drug makers and researchers have to be sure that the SE can be easily attributed to Tamoxifen and not to something else, so patients whose SEs could come from elsewhere are not included in the computations. (In my case, the Tamoxifen most likely interacted with other medications that I have no choice but to take, but it also likely affected me because of my brain chemistry.) For those of us taking other medications or with comorbidities, statistical reports of SEs as disclosed in research studies or by the drug makers are usually totally and absolutely useless. 

Linda-n3

I also was following Bottle O'tamoxifen, but found this thread today.  I had multiple SEs from chemotherapy, and am currently on gabapentin to treat those, and am having SEs  from the gabapentin now (slow mental function, difficulty finding words, etc).  I added tamoxifen in January, took it for just six weeks.  At four weeks I was having such severe depression and anger and felt as if I was crawling out of my skin as well.  My energy level was zapped so badly that I was unable to be out of bed more than about eight hours a day, and I was having severe pain in my ribs, shoulders and legs, and my mental functioning was completely gone (about 1000% worse than with the gabapentin alone).  I discussed this with my oncologist.  (She did ask about any homicidal or suicidal thoughts, and I certainly had entertained the idea most of the day, on most days over the past couple of weeks), and she said I could take a "holiday" from it if I wanted to, but that I really needed to continue it to reduce my cancer recurrence risks. 

I have been off of it for just 10 days and am no longer ready to hurt myself or anyone else, my energy has come back to about half of what it was before starting it, pain is improving, and I hope that this continues to improve over the next couple weeks.  I appreciate the comments about how long it does take for to get out of your system because I was beginning to get a little concerned, and now am a lot more hopeful.   

My oncologist says that most women do not have these severe reactions, and I am glad that I at least gave it a try.  I may start it again in the future when I am stronger and feeling better, but generally my goal is to become completely "drug free" because I'm just really sick of taking drugs to treat the side effects of the other drugs and having side effects from those drugs.  I hope to reduce my risks through more aggressive exercise and other lifestyle changes.  I too have been a vegetarian for the last dozen years, but have led a high stress lifestyle.  Overall, quality-of-life issues are of more importance to me than cancer recurrence right now.

Sandeeonherown

You may want to check out the nature gurrls thread n3ypb...there are wuite a few gals there who are going completely drug free as well and may have some suggestions you find helpful

robynkk

I think I've found a happy medium between totally drug free/natural and the alternative.  For me it's not possible to be w/out my pain medication and it gets a little overwhelming when you start adding up all the vitamins/supplements/bio identical hormones, etc. they want you to take including shots, natural cosmetics, replace your fillings in your mouth, totally organic, it's just not feasible for me living in the real world.  I do the best I can but I'm not going to go crazy with the natural path. 

LtotheK

Robyn, that seems like a sane position.  A good friend and fellow survivor said she really doesn't believe the diet is going to save us.  Of course, you want to be moderate, but I was already.  You do as well as you can, and figure even the water we drink has tons of estrogenic things in it...we live in a toxic world, and it's not just shampoo.

robynkk

i need to find a place to have my hormones checked, i think they are totally out of whack.  I don't even know if I've gone thru menapause or not because I had an ablation several years ago.  I don't have hot flashes but i have (what my husband calls) the "jitters" legs moving all the time and just an overall sense of wanting to go to bed and sleep all the time and cry.  Have an appt. w/a psychiatrist tomorrow but don't know if that's the right choice?

o2bhealthy

Robyn - have to checked out www.bodylogicmd.com for a Bioidentical Hormone Doctor near you???  I haven't tried them yet just because I cannot afford it right now but I have them saved to my favorites and get regular emails from the AZ doctors office.  

I am just so overwhelmed with what supplements to take, what to eat and not eat, I have no energy or inclination to exercise after a full day at work...ughhhhhhhhhhh!  I am on information overload,  It so much easier to sleep and not think about it...

I really hope you find a solution that works for you! 

robynkk

Michelle,

I made an appt. for this coming Monday with my OBGYN for a hormone screening.  I will definately check out the website, thank you.  One blessing is I'm a teacher and have great insurance.  I don't take ANY supplements and read so much conflicting info about what to take plus I HATE taking pills, I mean physically they make me gag I couldn't even take pre-natals when I was pregnant.  If they just made little supplements that would be so much easier  

Sandeeonherown

Robynk- I just had my estrogen levels and vitamin D checked...waiting on the results. I just went through my GP...though my naturopath has also checked my levels before too

o2bhealthy

Robyn - I take MircoLingual supplements whenever I can, they are the kind that are smaller then a pez candy and you put them under your tongue  where they dissolve. I currently take D3, Biotine and a B12 w/ folic acid that way.  I also take a liquid Omega 3 that tastes like a smoothy  from my local health food store.   PM me if you want the names of the of the products I use. 

I am really excited!  I just got off the phone with a NP in my area who spent 20 minutes on the phone with me (at no charge!!) to talk about what I am looking for in a doctor, my medical history and what I am want to accomplish without putting me at a higher risk of recurrence.   She works with bio-identical hormones and supplements too! 

My fingers and toes are crossed that this doctor will be one to help me get back on the road to health...  

robynkk

Should know my hornone levels in a couple of days.  Would love a list of supplements, did you get the list from your oncologist or ??  I love my NP I think she takes more time w/me that the MD, glad to hear you're getting some answers!! 

Sandeeonherown

Michelle- excellent news re. the naturopath. I need to go see mine again too....but it is just one more doctor you  know and I am so afraid of mixing supplements with the heart crap I am on now....don't want anything else!

ignorestats

All the posts on this thread are really scaring me. I am in the midst of TCx4, and am supposed to start tamoxifen in the fall. Does EVERYONE have a horrible time on tamoxifen?? Has ANYONE had an OK experience on this drug?

o2bhealthy

ignorestats - yes there are alot of women who do just fine on Tamoxifen and there are several threads like 'Bottle of  Tamoxifen' that attest to that.  This threads focus is more towards supporting/validating RobynKK original post so you will find a more negative slant regarding tamoxifen here then on other threads.  A majority of the women on this board had OK experience on Tamoxifen, some have had no issues at all.  Good luck with your treatments.  I had 4 round of TCH as well.

Pompeed

I quit after a month.  Couldn't function.  Had been to PC MD completely miserable and blood tests came back all normal.  So nothing else was causing the problems.

Day after I got the test results, I quit.  Have not told the oncologist yet.  Wanted to do something special next week and that wasn't going to happen if I couldn't function.

I'll go to the special event and participate and then tell the oncologist.  Took about three days after stopping to notice some improvement and about 10 days to feel significantly better.

Have to live right now.  Understand the increased risk over a decade without it but I have to live now.  Not be miserable for the next five years and unable to function hoping that being miserable for five years will pay off with a longer life.  By the time I have a longer life, I'll be too old to do the things I want to do now while I can do them.

Don't know how others look at this but to me it is all about trade offs and probabilities and what one thinks is important in life.

It's a gambler's paradise and the odds maker's ticket to a larger bank balance.

Sandeeonherown

Ladies, the gals who have no problems do not post...because they do not need the support or suggestions with it. I only found breastcancer.org because I had googled hotflashes and tamoxifen when I was on it...others had the same experiences...my breast cancer buddies who have not had hot flashes did not bother seeking advice....because they didn't need any. So....that being said, go in with an open mind and see what happens. Like pompeed and me, we tried it, we reacted, we went off. My reaction was a bit strong but who could have predicted that? keep track of wha hapens. Uusually they say if you are going to have a reaction it will be within 4-6 weeks so....that will tell you. I also worked extra ard at the gym to ensure I did not gain any weight on it...that helped...because I did not gain any weight!

Linda-n3

Pompeed, I told my MO that I quit after the 6 weeks, and she did try to persuade me to start again, but overall she was quite sympathetic, probably because I lost an additional 8 pounds after starting tamoxifen (I had already lost 10 since the neuropathy started).  She actually had agreed to a "tamoxifen holiday" and once I started getting it out of my system, I realized that I also want a quality of life rather than quantity.  I told her I would CONSIDER starting again when (if) the neuropathy from the taxotere goes away and I can start with very low dose.  So far the nerves have not regenerated to give me relief from those symptoms, but I am beginning to have more good hours in a day than bad.  I also find I cannot do without sleep, so continue with sleep and antianxiety meds, but these don't mess with my brain function during the day.

Michelle, nice to see you here as well! Now let's get back to that healthy living and rack up those points for the Birdees (on the e-lab project thread)!

robynkk

I only know how I felt personally and the positive did not outweigh the negative, quite the opposite.  I was actually suicidal on Tamoxifen, I couldn't function physically or emotionally but my ONC said very few women have that side effect.  I didn't do any research prior to taking Tamoxifen so I wasn't really expecting any side effects, I thought I went into it with an open mind.  AND my ONC said it only increased my odds about 6 % so that definately wasn't worth it.  Best of luck to those of you on it and those getting ready to be on it, just know you have options! 

Pompeed

That's half of my arguement, Sandee.

The advice is to stay healthy, get exercise sleep and keep weight and BMI within normal limits.

If there's knowledge that increased weight is an increased risk factor, then taking tamox and gaining weight on it is the opposite of the recommendations.

Don't know if there's a study which compares weight as increased risk factor as against tamox as a decreased risk factor.  Probably doesn't matter to me: if I can't function every day because of the medication and I'm gaining weight, I might as well feel better, function and be at a correct weight than everything which is counter to those benefits however much being up and about and getting my exercise and being the correct BMI and living a healthy life may just be slight benefits or no benefit in terms of recurrence.

If there's a recurrence, I'll deal with it then.  It might occur tomorrow.  But then again, I might die of something else before there's a recurrence.  Or it may come so late that it may not matter.  

None of these possibilities are within my control one way or another.  Except in terms of not letting these concerns about the possibilities of the future run and ruin whatever amount of time I do have left. 

Sandeeonherown

pompeed- we share the same opinion! I am doing my level best to be healthy and happy i could get struck by lightening tomorrow so....in the meantime, I will take my heart meds (which I am told will actually reduce th placque I have collected in my arteries by living 49 years!) and sleeping aid until I no longer need it....dropping estrogen levels are not helpingmysleep at all and I cannot function or heal without it so....until I don't need it, I have accepted that I need it....I do not miss tamoxifen and the numbers will have to be greater than 6% to getme to take something else...like you, if I have a recurrence, I will deal with it....for now, I am going to live my life with the assumption that it is not growing in me again.

o2bhealthy

I feel the same way but have never been able to articulate it as well as Pompeed just did.  Thank you Pompeed!!!

Linda-n3

Amen, sisters! FYI, I have been on a true vacation this past week, and for the first time in months woke up thinking the Dali Lama's prayer: "Today, I am thankful I woke up." I am developing strength and stamina and a better attitude, eating better, still need my sleep meds (I also will take until no longer needed, as sleep is critical!), and am so glad to wake up next to the one I love, the one I went through all this crap for to begin with. And I am looking forward to another day, one at a time. Hugs to you all, Linda

ignorestats

thank you for that link; that is reassuring. the best of luck to you.

travelgal6979

Hi all.  I've posted on this board before because I had SEVERE side effects on Tamox.  It was just nightmarish.  I tried it 3x's and won't be going back on it again.  My oncologist is not too happy with me for my decision but she didn't have to live thru the side effects.  I couldn't live like that for 5 years.  I'll see what happens after I'm post-meno and try the AI.  I do want to offer one thought on the subject, and I'm not comfortable saying it, since it's very personal for me.  I think one reason why gals may have really bad SE's may be due to a possible family history of depression...whether they know they have it or not.  I have a sister who has Bi-polar II and I had a tough time with post-partum depression after my daughter was born 20 years ago.  Otherwise, I'm a very positive, upbeat person.  But, I wholeheartedly believe that my family is VERY sensitive to their hormones being in balance.  The reason I say this is because my sister's bi-polar began at puberty and, of course, we all know what causes post-partum... hormones being out of wack.  I'm positive that my hormones need to be balance and when I took Tamox, I went into a major tail-spin due to my hormones not being balanced.  I didn't feel depressed but felt like I couldn't move or do anything.  I was totally non-emotive.  I felt awful...like I had the flu.  My oncologist finally told me that it was depression.  She also said that a very small % of women have a really tough time on Tamox.  I don't think the drs want to tell women about the SE's.  They also don't know which gals may be extra sensitive to a hormonal imbalance.  This is my belief.  Best of luck to everyone on this board. 

Linda-n3

Travelgal, I think you are right about sensitivity to hormonal balance.  Also, I think the doctors don't actually KNOW how many women have problems on these meds because so often if the problem isn't in the textbook, they refuse to believe it could be "real" and it takes a lot to get them to report any adverse reactions to the FDA, so I believe the statistics are very skewed due to lack of post-marketing reporting, especially for older drugs that are considered "safe" because they have been in use for so long.

travelgal6979

Hey n3ypb:  I completely agree and think that's an interesting point you raise that about the studies and statistics being skewed.  Why does it not surprise me tho'...