Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Join our Webinar: REAL Talk: Healthy Body and Mind After Breast Cancer Treatment - Jan 23, 2025 at 4pm ET Register here.
Take our poll: Has your faith, spiritual, or religious beliefs changed since cancer?
Share with us: What are your "mantras" to get you through a test, treatment, a bad day?

Bottle o Tamoxifen

1…703704706708709…1022

Comments

  • ali68
    ali68 Member Posts: 644
    edited June 2013

    I stopped and started again and I feel so much better. I'm sticking with Tamoxifen so just 12 months of taking it. When I go to to my cancer centre I have spoken to ladies who have stopped and had there cancer return. Who's to say it would have happened anyway but they are back on Tamoxifen now. They all tell me to take it for 10 years if I can. Interesting, a lady I know took it for five years then stopped. She then got a brain tumour and is back on Tamoxifen.

    Over here Tamoxifen is the best drug going and they are finding better results.

  • chabba
    chabba Member Posts: 3,600
    edited June 2013

    Lacey, I was started on the Als and switched to tamoxifen by my MO because of the horrible pain.  Been on Tammy 2 1/2+ years and the SE's are annoying but manageable. I am, however, 20+ years post menopause and 70 yrs old.

  • 3monstmama
    3monstmama Member Posts: 123
    edited June 2013

    justagirl, my fingers won't make a fist in the am--its like I have to stretch them out. I often wake up with some serious tingling in my fingers. And i've had the hip pain too but only in my right hip. And the dropping of things!--yikes!

    i have to say the joint pain and dropping stuff really sort of scares me.  My mother had plain arthritis but my aunt had killer RA---people told me it was the worst they had ever seen.  She ended up with both knees replaced and a hip replacement.  add to that that I live in the PNW where there is so much MS so my paranoid self worries about that too. I confess to being nervous about tomorrow.

    Has anyone had luck with tea containing tumeric reducing joint pain?  I was told by a friend with RA that tumeric is an anti-inflamatory.

  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 77
    edited June 2013

    I have been on tami about a year.  I started on Arimidex March 2012 for 3 months and it was horrible, I felt like a 70-year old woman.  My onc switched me to tami.  The first couple months were kind of rough but I seem to be tolerating it well now.  Since I started taking it I have added a cholesterol pill, Ambien and Zoloft.  I don't want to sound like a pharma queen, but the Ambien and Zoloft gave me my life back.  Getting a decent night's sleep, and getting rid of the depression ... I was just dragging myself thru each day, and now I feel like myself again. 

    ALSO, I have lost 12 lbs.  I am 5'6" and was 150 before, during & after treatment (chemo Sept-Dec 2011, rads Jan-Feb 2012.  I started dropping weight earlier this year and I am at 138".  I stopped drinking pop, and have backed off the french fries.  I have not been walking or working out ... but I do feel good enough to work in my garden, which has been neglected the last 2 summers.  A little manual labor feels so good! 

    Lingering side effects ... I still have neuropathy in my feet (damned Taxotere!), and I get leg cramps.  Acupuncture did wonders for the neuropathy.  I have occasional hot flashes (I was post-menopausal when I was diagnosed.)  Just in the last 2 weeks I am noticing a slight vaginal discharge.  I am about due for my annual so I will check with the gyno.  I had my ovaries out but I still have the uterus. My hubby and I like my vagina and I did not want it to fall out, and I had never had female problems, so I ditched the ovaries when my niece was diagnosed with ovarian cancer but kept the uterus. 

    June 10 is my 2-year cancer-versary.  I feel VERY, VERY blessed to be here.   The girls on the boards were my lifeline during the worst of it, and there is a wealth of knowledge & understanding here. 

    Everyone be well, and have a great weekend.

    Debbie

  • jo1955
    jo1955 Member Posts: 7,545
    edited June 2013

    Debbie - I would certainly ask about the discharge at your next gyno appt.  Congrats on your upcoming 2 year cancerversary.

    I am 4 years postmenopausal and have been on Tami for 2 1/2 years.  Started spotting yesterday.  Grr!!!!  Six months after starting Tami is when my uterine issues started.  Have had 2 biopsies, 2 D&Cs and a 3 cm polyp removed.  I think it is time for a hysterectomy.  I talked to my BS for advice.  I really trust him and he gave me good advice.  He even consulted with a MO friend who also agrees.  This really sucks!  With all the talk now of Tami for 10 years, I don't see how I could do that and have to worry about things like endometrial cancer.  I HATE THIS DISEASE!!!  Whew!  I needed to vent.

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited June 2013

    Jo, sorry for this latest Tami wrinkle! Does your doc concur about the hysterectomy?

    I do hope you can get this piece settled so you can have some peace.



    I saw MO today and she is big on my being able to try to improve my quality of life which is pretty far below the pace I lived up until last year at this time. The main issues now that my regular exercise pgrm has alleviated any serious joint pain are the odd and not so restorative sleep patterns, and my reduced cognitive functioning....and ADD like concentration....not good! She would love me to start an AI to see if I could eliminate those problems.......however, I feel it is a gamble and she feels it is an opportunity! We agreed that I would think further about it.

    Friends and neighbors who have had other types of cancer have surgery, chemo and or radiation, and they are done except for scans. While I guess this adjuvant treatment is going to help stave off recurrence, it sure makes us pay the price up front! MO also said she doubts she would ask me to stay on Tami for more than five years, especially since I will have arrived into my seventies at that point.



  • chachamom
    chachamom Member Posts: 410
    edited June 2013

    Thanks for your 2 year report Debbie!!!!  Woo Hoo!

    My MO told me from the start she only wanted me on Tamoxifen for 1 year (cuz I'm post-menapausal)....but gave me this year to "build bone" with the Tamoxifen.....well its been a year (started May 2012) and I'm going in for my next MO appt July 1st.  I'm pretty sure she's going to want to change me to an aromatase and I'm SCARED!  The Tamoxifen was difficult at first, but the SE's have lessened and are manageable.  My DEXA scan I just had shows I'm still losing bone density, not gaining it......just this side of osteoperosis.  The devil I know is less scarey than the devil I don't!  We'll see....

  • jo1955
    jo1955 Member Posts: 7,545
    edited June 2013

    I saw my MO yesterday and he has taken me off Tami for the time being. He also said that I would most likely be on Tami for 5 years - not 10 so I am halfway there.  I called and had my gyn appt moved up to this week.  Seriously going to have a discussion about having a hysterectomy.  I think 2 biopsies and D&Cs plus the polyp removal is enough.  It seems that each year the problems keep getting worse and not tapering off.  New appt is for this Thurs morning.  Could I ask all my Tami sisters to have a pocket party?  I would feel so much better knowing ya'll are with me.

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited June 2013

    Jo - I can feel your frustration!!  I hope you can get this taken care of once and for all ASAP.  Yes, we will be there with you this Thursday for a PP and to make sure you are satisfied with whatever the gyn says before you leave that room - no sense arguing with a BC sister!

    Chachamom & Lacey - I agree with you both about sticking with the devil you know. I'm about halfway through my 5 years and my MO has said she wants me to go on an AI afterwards instead of 10 years on Tamoxifen.  I don't want to do either, but I really don't want to do an AI.  I guess we'll see when the time comes, but I'm leaning towards taking a break away from all of them.

    Chachamom - I would be surprised if your MO put you on an AI with your bone density declining.  I'm postmenopausal and mine didn't mind when I asked if I could take Tamoxifen instead of an AI, so hopefully yours will give you at least another year.

  • chabba
    chabba Member Posts: 3,600
    edited June 2013

    I'll be there Jo. 

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited June 2013

    Me too, Jo! Good luck!

  • tenaj
    tenaj Member Posts: 365
    edited June 2013

    Good luck Jo! Will be thinking of you.

  • schipmom
    schipmom Member Posts: 100
    edited June 2013

    Jo...I don't post much because I've been off the Tami for almost a year now, but I do read the posts almost every day.  I had so many issues, just like you, with the thickening lining, periods that wouldn't stop, polys, D&C's, biopsies, etc.  I was considering the hysterectomy if I couldn't stop the Tami.  I had been on it for a little over 2 years and I didn't want to go through another 3 years of that hell, so after talking with my MO, he said I could go off since 2 years was better than nothing and they just watch me very closely.  Of course, I sweat it out every time I have a mammo for fear stopping the Tami will come back and bite me in the butt, but I do feel better off it.  When the side effects start to outweigh the benefits, something has to give!

    Good luck with your appointment and I will be attending that pocket party on Thursday!!!Smile

  • jo1955
    jo1955 Member Posts: 7,545
    edited June 2013

    Thanks everyone for the pocket party.  Appt time is at 8:15 Central Time.  I will post results of the appt sometime tomorrow afternoon.

    According to my MO I am halfway through Tami.  I am off it right now until I find out what my GYN is going to do.  I'm not sure if I will go back on it if all he will do is a biopsy.  The uterine problems seem to be getting worse each year and it seems like I spend my summers having biopsies that require me to go to the hospital for day surgery.   I would rather have to see my MO more often and be watched than to face more issues next summer.  This is insane.  BTW!  My MO does agree with me that it is time for a hysterectomy as well as my primary doctor.  I will wait and see what my GYN has to say for himself.

  • chachamom
    chachamom Member Posts: 410
    edited June 2013

    I'll be in your pocket Jo!



    Heartnsoul : I hope so! I'm inclined to go off everything rather than lose more bone density! I broke three ribs in January and I'm STILL having tenderness/pain from one of them! Thought I was all healed up and then reached across the bathtub to scrub the other side and....ouch! Three days later and hurts to put any pressure there!

  • BethCon1
    BethCon1 Member Posts: 77
    edited June 2013

    I only just started Tamoxifen, but the last week or so I've been having pressure in my pelvic area, lower back pain, crampiness and just feeling yuck. It feels like I'm getting my period, but I shouldn't be getting it until the last week of the month. I'm premenopausal, I was diagnosed last year at 32 (33 now) and my onc told me that usually the younger women have less side effects. Right off the bat I noticed more brain fog (on top of the usual chemo brain) and vision issues, and now this crampy pressure. My onc wants me on this stuff for 10 years...I just can't see that happening.

  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 77
    edited June 2013

    Jo - I'll be in your pocket too! 

  • jo1955
    jo1955 Member Posts: 7,545
    edited June 2013

    Thanks everyone for the pocket party.  It sure was nice to have you along with me.

    So here is what happened today.  Dr did a transvaginal ultrasound which showed a thick uterus - again! some fibroids, etc.  In other words, I am a mess.  Since my mom had pancreatic cancer, I had to go back in the morning for an endometrail biopsy to rule out cancer.  On the 20th he will do my annual pap since I had to have the one year since the last one.  I will see my primary doctor on the 27th for a surgical clearance.  Yes, there is another surgery in my future.  Dr said with my history of 2 biopsies, 2 D&Cs and the polyp it is time to have a hysterectomy.  I am going to ask him in the morning if he is also planning on taking my ovaries.  I also want to find out if he will do the procedure vaginally or what.

    The bright side to all this is I still get to go to Las Vegas with DH for our 40th anniversary.  We are going July 1 - 8th.  I will need to do my preadmit on the 11th.  Surgery will be done on Saturday and I will be in the hospital for 3 days and 2 nights.  Then a month for recovery.  Also, my MO took me off Tami until after the surgery.  Already starting to sleep so much better.

    I HATE TAMOXIFEN WITH A PASSION

  • odie16
    odie16 Member Posts: 1,415
    edited June 2013

    Jo, so sorry you continue to have problems but am glad there is an end in sight with the surgery. I am on the every six months trans vag ultrasound program right now myself so I agree Tamoxifen sux....



    Enjoy Vegas and know that we will be with you at surgery.

  • schipmom
    schipmom Member Posts: 100
    edited June 2013

    Jo,

    I agree...I hate Tamoxifen too!!  So sorry you have more problems to deal with, but glad that at least this garbage will be coming to an end for you soon.  And you have Vegas to look forward to!  Enjoy and Happy AnniversarySmile

  • newfmama
    newfmama Member Posts: 46
    edited June 2013

    Hi ladies



    I haven't been on Bco for quite awhile. I sure hope the Tami ladies are coping. I could really use your help.

    I've been on F Tami for about 500 long grueling days. The hot flashes I can stand but everything else really sucks. I saw my Onc in April & she blew me off when I asked if there was anything I could do. Disheartening to say the least.

    I decided a few days later to stop the F Tami. It's been almost 2 months. You won't believe this but SE have not gotten better. In fact I've been more tired, weaker, having trouble swallowing and at my wits end.

    I saw my PCP & she ran blood work for Mono, Hepatitis, Rheumatoid Arthritis, Immune & CBC. Liver enzymes came back high so she did Ultrasound of liver, pancreas, kidneys & spleen. US came back all normal. More in depth Liver labs still show higher than normal.

    She's at loss to know what to do.

    I'm 56 not overweight, athletic & a very motivated person but I have trouble walking, tingling in fingers, trigger fingers on both hands, trouble swallowing, severe bone & joint pain all over, exhaustion, but trouble sleeping and of course hot flashes & no sex life.

    I'm at wits end & am hoping some on this thread just might have an idea of where I can turn.

    Sorry for the long post but I am really desperate for help.

    Hugs.

  • justagirl
    justagirl Member Posts: 633
    edited June 2013

    newfmama: this is the RN in me, not as a taker of Tamoxifen. And I am not saying what I am about to to scare or upset you but has your Dr ruled out MS? What you describe is a lot of the symptoms, and if it is, there are medications that can help bring your health back more to normality.  Liver labs will always go high when your system is out of balance as it's the filter for your body and the high numbers mean something is going through you and your liver that shouldn't be there.  If you have mosquito's in your area, as we do here, you also might have your blood checked for the virus's they carry - Ross River Fever, Dengue Fever, and a few others that my Tamoxifen filled body can't think of.

    You could not be sleeping because of the pain and hot flashes, the hot flashes could be menopause and the lack of sex life is simple - you don't feel good! And you are tired and hurting - not a good basis as far as I am concerned for having sex. I would be in the 'leave me alone' mode.

    Don't think the Tamoxifen is doing all of this to you so first you might consider changing to a doctor who will listen to you and consider going back on the Tamoxifen. It's a safety net to some degree  against BC reoccurring and I see that your tumor was a Grade 3, so invasive and aggressive and a positive lymph node...so you do need the protection of Tamoxifen. It has made my BC blood count go from 80 in January when we discovered my lung tumors to 26 now which is considered very good and my CT lungs show no increase in size or number of tumors since January. And that is good for me as there are 100's of tiny ones all over my lungs.

    You need more testing for sure and it's better to know the Devil you are dealing with I think.....

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited June 2013

    Jo - so glad the gyn agreed with everyone else!  Sorry you have to have another surgery but really happy you get to squeeze in Las Vegas before you have it.  And it will be SO nice to have the problem taken care of once and for all.

    newfmama - I'm so sorry the Tamoxifen is giving you problems even after you quit!  I've heard it can take several months to get it all out of your system.  Maybe the SEs are worse because they were still building up when you quit and they will start tapering off soon, do you know what I mean?  I have some of the same SEs you do - trouble swallowing, bone pain, exhaustion.  I see my MO next month so I guess I'll mention some of these to her.  The only reason I don't bother is that she usually just recommends that I see a specialist - no help whatsoever.  I think MO's are trained to look at you like you're crazy when you mention SEs.  I hope you can get some answers soon, but I really hope all those SEs just go away!

  • newfmama
    newfmama Member Posts: 46
    edited June 2013

    Thanks justagirl & heartnsoul. I appreciate your replies. I definitely think it might be wacky hormones. I forgot to say I have hypothroidism & pernicious anemia (b12 deficiency). I take thyroid med & get b12 shots but think things are way out of balance.

    I see Dr again Tuesday & hope she can figure it out.

    I do want to get back on the big T to hopefully stave off recurrence.

    Take care & have a good night.

    Thanks!

  • justagirl
    justagirl Member Posts: 633
    edited June 2013

    newfmama - let us know how it goes on Tues. But hypothyroidism, even if your meds aren't exactly right (I have a girlfriend going through adjusting hers with her Dr as she lost 40 pounds), that wouldn't make you hurt. I've had anemia quite a few times, so when the number drops I increase my lean beef consumption to three times weekly, eat spinach and drink orange juice with the spinach or beef.. ...somehow the orange juice is supposed to up the intake. The last time I got depleted I looked at the food chart and decided to increase my parsley intake (chart said it had more iron in it than spinach) so put it in salads, soups, mashed potatoes, stir fry, couscous, and lots in Tabuli.

    I wish you a better visit with your doctor.......

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,781
    edited June 2013

    schipmom- I went off tamoxifen after 4 months because it caused a bloodclot and I had a 'heart event'...no damage to my heart, thankfully, but I was immediately taken off. At first I was really freaked out to not be on any medications..but my tamisisters and my oncologist reminded me that tami continues to work in your system for a couple of months after you take it. I have now been off tami for 2 years and am fast approaching my second post annual post-cancer mammogram...it makes me nervous as hell but it's ok....it is a necessary evil.

    Jo, there for you. I don't come often to the site but read it daily and have been sending up thoughts for you. Perhaps with a hysterectomy/oomperectomy you will also be able to come off of tami? Wouldn't that be a relief!! In the meantime, enjoy your time away...you deserve a break!

    newfmama- check with an MS clinic and also have your vitamin D level checked....many of your symtoms mirror the symptoms my best friend had just befor eshe was diagnosed...there are meds that can 'freeze' it in its tracks or at least slw the progress if it is ms...and vitamin D is a key as well for MS, breast cancer and heart ....after rads and tami I too was EXHAUSTED...I had no air and couldn't figure it out as I had not had any exhaustion during radiation...it ended up being a bloodclot so don't let this slide. Make them keep testing you until they figure this out...

  • newfmama
    newfmama Member Posts: 46
    edited June 2013

    Thanks sandeeonherown & justagirl. Your suggestions are vey helpful. I will bring this up to my Dr on Tues.

  • jo1955
    jo1955 Member Posts: 7,545
    edited June 2013

    Sandee - I would love to get off Tamoxifen but right now my MO is insisting I do the last 2 1/2 years.  I have so many risk factors for a recurrance that he feels that would be best for me.  I have already told him I would not do more than 5 years.  Thanks for all your good thoughts and support.

    I will get my endometrial biopsy results on Thurs when I go for my pap.  I will update later that day.

  • RunFree16
    RunFree16 Member Posts: 649
    edited June 2013

    Jo--pardon my nosy question, and it's fine if you don't want to answer it--but your diagnosis looks about like mine, so I'm puzzled that your doctor thinks you have a lot of risk factors for recurrence?  (Also sorry if you gave the key information earlier and I missed it.)

  • jo1955
    jo1955 Member Posts: 7,545
    edited June 2013

    RunFree16 - No such thing as a nosy question.  I will answer anything you throw at me.  

    He is speaking in terms of endometrial cancer and would consider that a new primary.  I am off Tamoxifen for the time being and that is of concern as well.

    I have been on Tamoxifen for 2 1/2 years now.  Already have had 2 biopies, 2 D&Cs and a 3 cm polyp removed.  I am post menopausal and recently had some abnormal bleeding.  Last week had a transvaginal ultrasound and endometrial biopsy - waiting for results.  Tami has not been kind to my uterus and my gyn fears I may have endometrial cancer.  There is also a history of cancer in my family which only adds to the recurrance risk.  Age, having high blood pressure, history of fibroid tumors, adhesions around ovaries from ectopic pregnancy many years ago and the list goes on.  I am scheduled to have a complete hysterectomy - ovaries and all on Jul 13th.  

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.