Quitting Tamoxifen

LoveBabyJesus

dbhadra said:

I need to do more research
I;ve been feeling very anxious about these decisions that I will need to make after surgery and rads. Just today I was talking with my therapist about needing to do more research for myself on side effects vs effectiveness of tamoxifin, AI drugs, ovary removal, etc.

I;m sorry to hear some of you are having side effects, at the same time I am glad to read everyone;s comments here, since it helps me to know I am not the only one struggling with these issues. Since my dx in Dec the amount of new information about cancer and cancer fighting drugs that I have gotten is just amazing - definitely much more than I EVER wanted to know. As tjohn son said, sometimes it feels like we are damned if we do and damned if we don't. It's all about the tradeoffs, I guess.

For some reason I was not as afraid of the chemo as I am of the drugs that I would take afterwards. I am trying to remind myself that I am lucky that I am 100 ER+ so that I do have the option to take drugs to reduce my risk. But I am still very afraid of the side effects. Maybe it is just the cumulative anxiety about everything that is getting to me.

Laura

Laura -- Good to see you.
Laura -- Good to see you. Your face crossed my mind recently and was just wondering how you were doing.

LoveBabyJesus

kellyk123 said:

Different Ballgame, you are
Different Ballgame, you are very wise. Thank you for such heartfelt words of wisdom. Positive IS powerful and I value quality of life too. A great book if you are looking into holistic methods, Anti Cancer A New Way of Life by David Servan-Schreiber, MD, PhD.

{{{HUGS}}} to us all who are faced with these choices and thanks for all your replies and help!!

tamox
I just read your post, sorry I missed it.

I see you saw your Onco. and both of you have made a decision. Such a difficult path to be on, isn't it? You continue to recover and feel better sister. I too had depression with tamox, really bad. I was never depressed before. Ever. And this felt so weird and bad. But it went away after a few months. I guess eventually the body agrees to it. I agree quality of life is very important. So you take care of your soul first and hopefully you'll be able to continue treatment.

Good luck and hugs to you.

cathyp

Different Ballgame said:

Difficult Decisions
Dear Kelly,

Anything we do connected with the cancer and the prevention of cancer carries a consequence. What do I value? I value quality of life. I value the right to make a decision, even though it may not be the popular decision or the "right" decision.

There are many women who have no side effects to Arimidex, Fermara, or Tamoxifen, but then there are women who do have side effects to these drugs.

No one can relate to the intensity of those side effects unless they have experienced them. We are all different and we all react in varying degrees.

I had side effects to Arimidex, then Anastrozole, and finally Femara. After being on Arimidex for 6 months, the side effects exploded. Anastrozole's side effects waited one month, and then appeared. Femara's side effects took 2 weeks to appear. From my experience, it takes more than one month for the drug to leave the body. In my case, it is many, many, many months. I am curious to see what my body will feel like after being off the drugs for one year.

I am 70 years old, basically in excellent health, and debated 2 months on whether I wanted to take Tamoxifen. One day I said, "yes" and then the next day I said, "no". I was a yo-yo. My final decision, for me, was NO after discussing it with my hematology oncologist. She will continue to test my blood every 3 months and examine me every 3 months. My surgeon will see me twice a year as opposed to once a year. My radiation oncologist sees me twice a year.

I feel I am fairly well covered for body examinations. I am also pursuing other holistic methods.

Kelly, do not have fear in your body...that is a negative. Decide for yourself what is best for you. Be positive. Positive is powerful.

Lots and Lots and Lots of Hugs,
Janelle

My oncologist (a male breast
My oncologist (a male breast cancer survivor) stated that a good diet with exercise can be very helpful if a patient decides against or can not take tamoxifen. Anyone else hear something similiar?

survivorbc09

cathyp said:

My oncologist (a male breast
My oncologist (a male breast cancer survivor) stated that a good diet with exercise can be very helpful if a patient decides against or can not take tamoxifen. Anyone else hear something similiar?

I've never heard that Cathy,
I've never heard that Cathy, but, a good diet and exercise is always helpful no matter what.


Jan

carkris

cahjah75 said:

Kelly
it is difficult to know what's best. I was depressed going through perimenopause and gained 80+ lbs over a couple of years. At 5' tall I was dealing with the weight, sadness and menopause issues all at once. Recently my gyn tried my on a few different anti depressants to help with the hot flashes but nothing did so I'm not using anything. I suffer through them. Only you know how you're feeling on or off the drugs.
{{hugs}} Char

I think you should look into
I think you should look into changing your antidepressant as it clearly isnt working. I am on lexapro and they changed it to genetic and man did I take a dive. Once it was changed to brand name I was back to normal. I got real insight into how I am handling the hormonal fluctuations. Between the chemopause and tamoxifen. I had lost alot of weight with chem oand am putting it back on. I know I can lose it, but its hard. Exersize helps to deal with issues and also my achy joints. You will feel better once you get a med that works. Everyone has different chemistry. Then you will be motivated to work on the weight thingg and things will fall into place.

KC1971

i stopped taking tamoxifin
Hi..see the date on this post and hope your still logging on..I have struggled from day 1 about taking this pill! I had no issues saying ok to a double masectomy and 4 rounds of Tax/Cytoxin...as gross as it was i got through it....i kicked and screamed about taking this after chemo!! I finished March 2012..and waited till july to start tamox....i was in chemopause so the hot flashes were ok....fast forward to September ..my wrists were swollen and painfull even to push a door open...my hair growth slowed down..the discharge became intolerable to the point of using tampons to enjoy a walk...the hot flashes even worse..and sexually ....well..numb...and lets not talk about the fatty gut..I said..F it in October and stopped...3 weeks later i started bleeding...im thinking it was my body getting rid of the uterine lining that had been building in that short time..after this...hot flashes all but stopped my emotions came back the discharge stopped my wrists have no pain ive lost the bloat..sexually i can feel again...my eyebrows are finally filling in,my hair too
I'm happy again...point is tamoxifin has a been a difficult decision ..i know how I feel on it and i know how i feel OFF it......what did you decide to do?

KC1971

i stopped taking tamoxifin
Hi..see the date on this post and hope your still logging on..I have struggled from day 1 about taking this pill! I had no issues saying ok to a double masectomy and 4 rounds of Tax/Cytoxin...as gross as it was i got through it....i kicked and screamed about taking this after chemo!! I finished March 2012..and waited till july to start tamox....i was in chemopause so the hot flashes were ok....fast forward to September ..my wrists were swollen and painfull even to push a door open...my hair growth slowed down..the discharge became intolerable to the point of using tampons to enjoy a walk...the hot flashes even worse..and sexually ....well..numb...and lets not talk about the fatty gut..I said..F it in October and stopped...3 weeks later i started bleeding...im thinking it was my body getting rid of the uterine lining that had been building in that short time..after this...hot flashes all but stopped my emotions came back the discharge stopped my wrists have no pain ive lost the bloat..sexually i can feel again...my eyebrows are finally filling in,my hair too
I'm happy again...point is tamoxifin has a been a difficult decision ..i know how I feel on it and i know how i feel OFF it......what did you decide to do?

dkvine

Patches of hair

I have been on Tamoxifen for just about the 5 years they told me I would be on it.  Was also on Taxeltere, and my hair didnt come back like everyone else's did.  I was hoping that after I stop Tamoxifen it would come back.  I dont see much hope on any website.  I have been wearing a wig since my hair fell out in 2007.  I get terrible hot flashes day and night and the wig doesnt help any.  I used to like the warmth but I hate it now.

 

dkvine

Patches of hair

I have been on Tamoxifen for just about the 5 years they told me I would be on it.  Was also on Taxeltere, and my hair didnt come back like everyone else's did.  I was hoping that after I stop Tamoxifen it would come back.  I dont see much hope on any website.  I have been wearing a wig since my hair fell out in 2007.  I get terrible hot flashes day and night and the wig doesnt help any.  I used to like the warmth but I hate it now.

 

jnl

dkvine said:

Patches of hair

I have been on Tamoxifen for just about the 5 years they told me I would be on it.  Was also on Taxeltere, and my hair didnt come back like everyone else's did.  I was hoping that after I stop Tamoxifen it would come back.  I dont see much hope on any website.  I have been wearing a wig since my hair fell out in 2007.  I get terrible hot flashes day and night and the wig doesnt help any.  I used to like the warmth but I hate it now.

 

I hope that when you stop

I hope that when you stop tamox that your hair will come back like you want it too dkvine.  I know some said that theirs came back just like before, some haven't had much luck, and, some have said it came back differently, thinner.

Everyone is different and I just hope yours will come back just the way you want it. 

Keep us posted.

Hugs, Leeza

helen e

Kelly

My hair did almost the same thing. I had longish hair and it started coming out. My husband said it looked like Sasquatch was in the shower after me. It would just come out in clumps. I couldn't believe how much it affected me. It was horrible! Finally, I just went and got it cut really short. I have since let it grow out again and although it's not as long yet I am not losing it anymore.

I looked on line to see if this was a side effect and it did say thinning of hair, but who knows? Never said anything to my Dr. he thinks it is very important to take the medicine and I know he wouldn't take me off it. Hope this makes you feel less alone in this battle.

 

cindrajim

Concerns about Tamoxifen

Hi, I am a 47 year old female that had stage 1 ER positive (DCIS) breast cancer w/a double mastectomy in June 2016.  No chemo & no radiation- lucky!  Just got done reconstruction.  However, I feared the Tamoxifen more than the double mastectomy surgery!!!  After starting Tamox last July, I started w/hot flashes 3 weeks into taking it.  However, I started taking the DIM pill (which is a vegetarian pill I get from Walmart on-line) to stop the hot flashes.  It has been working great!  After 5 months of taking Tamox I noticed hair thinning around Nov & Dec.  So I started taking Bioten.  It worked great during Jan & Feb & my hair grew back nice & thick!  Hair is now doing great!  However, w/me being 5'5" I really should not be up to 150 lbs.  Looks like the Tamox made me gain 4 lbs. lately (in the tummy area)!  I have never had tight 11/12 size jeans before!  I am concerned about this Tamoxifen causing me to gain weight!  I have joined Planet Fitness in January & I am on a 2-3 day workout per week.  I do alot of walking on my Avon delivery days.  So I know I am active!  I swim all summer too!  I have started dropping my sugar & carb intake.  I am taking Curcumin, multi-vitamin, flax seed, calcium, DIM, Tumeric, Fish Oil just to do something good for my body.  I did get the genetic testing done back in January & found that I have the P-Ten gene (which causes breast cancer, uterine cancer & thyroid nodules).  Well, I have 3 benign thyroid nodules that showed up in Feb 2016.  Had the breast cancer cells (DCIS) that showed up Feb 2016.  What a shock of a "well" visit I had! So I am concered about getting uterine cancer too!  If I stop taking Tamox will I get cancer somewhere else?  Where else could I get it?  Should I still try getting on to a natural remedy that lowers the estrogen level?  I know the doctors & medical staff will tell me to stay on the Tamox.  I have been like a ping pong ball lately thinking about this. 

meschellejensen

Tomoxafen??

Hello!

I was recently diagnosed with stage 1 breast cancer.  I have had a lumpectomy and I will begin radiation soon.  I am trying to decide if Tomoxafen is worth the side effects, or if there is another medication suitable for someone that is pre-menopausal.   I have already had mood swings, depression, and weight gain as I go through menopause, so I am nervous about the side effect Tomoxofen would bring.  I am honestly considering not taking anything, but of course that is scary too.  I would appreciate any suggestions!

Clementine_P

Why not give it a try

A lot of women suffer no side effects at all from Tamoxifen.  I had stiff joints for a couple of months but once that settled down had no discernable side effects.  I've been on it for 6 1/2 years now.  You can start it and stop it if you suffer disabilitating side effects. 

Clementine

meschellejensen

Clementine_P said:

Why not give it a try

A lot of women suffer no side effects at all from Tamoxifen.  I had stiff joints for a couple of months but once that settled down had no discernable side effects.  I've been on it for 6 1/2 years now.  You can start it and stop it if you suffer disabilitating side effects. 

Clementine

Tomaxifen

Clementine,

Thank you so much for your response!  I am considering taking the medication on a trial basis.  I have one of the greatest jobs anybody can have (first grade teacher) but emotional stability, patience, and high energy are job requirements.  From all that I have read, Tomoxifin takes a big hit in these areas.  I have also been told by the Medical Oncologist that many women take Effexor to help with these side effects.    I just wonder if the benifit outweighs the cost.  My genetic testing suggested a very low chance of recurrance (Luminal Type A).  I am really wondering if a 3.3% benifit is worth the possible side effects, and possible second medication.

lintx

I agree with Clementine

I will be at my 5 yr point, taking Tamoxifen in September. I recently had my onco annual, and she said I can discontinue the med or stay on for 10 yrs. I'm not sure yet, but I've had no side effects. I suggest trying it.  Believe me when I say I was terrified to swallow that first pill.  Now I'm afraid to stop! Go figure. Linda

button2

lintx said:

I agree with Clementine

I will be at my 5 yr point, taking Tamoxifen in September. I recently had my onco annual, and she said I can discontinue the med or stay on for 10 yrs. I'm not sure yet, but I've had no side effects. I suggest trying it.  Believe me when I say I was terrified to swallow that first pill.  Now I'm afraid to stop! Go figure. Linda

Hi Linda

Same here. My appointment was in March and the doctor told me to take it another five years. I've decided to do it. I no longer have side effects, and I probably wouldn't lose much weight anyway since I'm 51 now. I keep my weight down with exercise, so I don't think I'd see a big change. I figure I've got nothing to lose staying on the drug. OOOXXXX Anna

lintx

Anna, great to hear from you!

I wondered if any of you were staying for the 10 years. Looks like Clementine is, also. I'm back and forth in the decision making process. I exercise daily and have managed to remain my normal weight, too.You're probably right since we've managed this long. Hugs, Linda