Zoladex

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MT1
MT1 Member Posts: 371

Hello all.

I wanted to start a thread with the title Zoladex to see if we could discuss our percieved side effects and to gain an understanding of what other people experience.

I am premenopausal, have completed treatment, chemo, bilat without recon, 28 days of rads, I am now on Tamox and am taking Zoladex shots once a month for at least the next two years with the intent to push my body into complete menopause. I am 42 years old. I have gotten 4 or 5 shots in total thus far.

About one week before the shot, I seem to be quite emotional in a teary and easy to cry sort of way. The week after the shot I am more prone to intense emotion-emotional confusion, heightened emotions. My joints hurt more than my 'new normal' during this period. I seem to be more affected by heat, though I am not getting hot flashes as I understand them. I don't seem to be getting night sweats either.

 I only get night sweats when I drink red wine so I have almost stopped drinking it altogether.  

I don't know if the heat I am feeling is related to Tamoxifen, Zoladex or living in a NYC apartment where I can't adjust my own heat. I have heard the Tamoxifen accumulates in the body. I have been taking both of these drugs for the same amount of time so there is no way to separate the side effects or effects out.

What about you? 

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Comments

  • MTnester
    MTnester Member Posts: 217
    edited December 2011

    I just had my third Zoladex injection this week. I've been on Tamoxifen for almost 90 days. I had very little side effects from just the Tamoxifen, but when I added the Z into the equation....HOLY night sweats batman. I also find I'm more prone to tears these days, but I chalk part of that up to the fact that I havent' slept all through the night for months. I have given up alcohol and If I do have a drink, I know my night sweats will be considerably worse. I cut all sugar out of my diet as of Monday in the hopes it would help....so far I can't say I've noticed a difference, but I have lost 5 pounds in a week due to watching my diet more strictly and adding in more exercise, which I also hope will help with my SE's.

     I'm premenopausal, 43 years old. My cancer was ER+ so my MO wants to eliminate all estrogen in my body. I will have a complete hysterectomy when I exchange my TE's for implants next year.

  • MaxineO
    MaxineO Member Posts: 555
    edited December 2011

    MellyT: I'm glad you started this because I am planning to start zoladex next week. I have been on tamoxifen for 3 months. My period started back 6 weeks after chemo ended and has been regular since, so my MO thinks zoladex would be a good idea. Not looking forward to hot flashes--those went away after chemo.

    How often do you have injections? I see some saying every week, but my MO told me once every 3 months. Is that a different dose?

    I am likely 10 years from natural menopause so am not thrilled about doing all this for that long, but I am happy to have the option.  I am 39 and premenopausal. I had MX, chemo, rads, and now on tamoxifen.

  • MTnester
    MTnester Member Posts: 217
    edited December 2011

    Maxine, I have the Zoladex injection every 28 days. There is a sronger dose that can be given once every three months.

  • PLJ
    PLJ Member Posts: 373
    edited March 2012
  • MT1
    MT1 Member Posts: 371
    edited December 2011

    I take Zoladex once a month, subdermally in my belly. I had estrogen and progesterone+ cancer (100%). It is interesting to hear that nail breaking is considered a side effect, I have begun to notice that this week.

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited December 2011

    I too am premenopausal and on Tamox (since Aug) and Zoladex (since Sept). Started Zoladex on a monthly tx but have since moved to every 3 months as everything seems to be working well.

    I did notice hot flashes with the tamox. Lately have been experiencing lots of joint/bone pain. Not sure if it is the move to every 3 mos with Zoladex? Have noticed that my nails, while not breaking, are definately changing - getting "ridges" is the best way to explain it.

  • Route53
    Route53 Member Posts: 340
    edited December 2011

    Ladies,

     Nice thread.  I can tell you that my wife just finished her 36th injection of Zoladex.  She had been on Zoladex and Tamoxifen.  To the person who said that the hot flashes got worse when the Zoladex started, that is true.  At one point, my wife was taking medication to limit the hot flashes but it just caused migraines so she stopped.  Around the 12th month my wife put on another 10-15 lbs despite exercising but still felt great. 

    As I mentioned, we are now just 3 weeks out from her last injection and will be interested to see if the hot flashes stop, the periods begin etc.,  At 46, the doctor says the fact my wife was still having bad hot flashes might mean she will come out of menopause.

    My wife did feel that with the lack of estrogen that her skin felt more damp and lost its elasticity.  It will be interesting to see the after effects of coming off the drug.  Still 2 more years of Tamoxifen though.

  • MaxineO
    MaxineO Member Posts: 555
    edited December 2011

    Does anyone remember when SEs kicked in? I had my first injection 3 days ago, and other than the 'warm flashes' that were already starting (from tamoxifen), haven't felt anything but a bruise at the injection site.

    I keep having secret fears that none of these medicines or therapies are working because I have had so few side effects from ANY of my treatments...

  • gillian38
    gillian38 Member Posts: 1
    edited December 2011

    Thank goodness I found others to discuss this with. I am 41 and have been on Zoladex for 14 months now.  I take it every 28 days. I tried Tamox but had ugly side effects so been on this ever since. I also take effexor daily since I started.

    The hot flashes are ugly!  I must go through at least 10-12 a day. Sweaty and all!  I would really hate to see if I went off the effexor what would happen.  I do get some bone and body aches also but they come and go in waves and can be somewhat related to the surgery and bad back.  Oh...and let's not forget the best part........I have never varied more than 5lbs my whole life but managed to gain 25lbs in 5 months..... :(  Haven't gained too much since but it is devastating.

    I am suppose to be on this for three years.  I was really wanting to come off of it early until recently when I was 1.5 weeks late for my shot.  I had the worst possible menstral cramps and pain I have ever experienced in my life....it was two days of pain but enough to scare me about how it would feel to come off of it.

  • MT1
    MT1 Member Posts: 371
    edited January 2012

    I don't get many hot flashes, I do get super warm. I don't take Effexor, though it was suggested. And I have lost at least 15 pounds since I stopped active treatment. The last time I weighed this little was a teenager. 

    One weird worry that I have because of the shots is: I wonder if getting a shot in the same area every month is not good? Are there side effects related to this? 

  • PLJ
    PLJ Member Posts: 373
    edited January 2012

    Ok, I'm 1 week into shot #2 and the first day, I noticed my tongue felt weird and then my mouth tasted strange. Tongue is fine now but throughout each day, my mouth gets a really strange flavour (almost bitter like aspirin)...anyone else with this odd situation?

    Hot flashes still tolerable and exercising 1 hour/day.

    I wondered that, too, about the shot in the same place each month. My doctor said it is the largest needle he has ever had to administer and that he is surprised I don't need a stitch afterward. He gives it subcutaneously in back of my 'good' arm but I don't want to be scarred there...have enough of those!

  • MTnester
    MTnester Member Posts: 217
    edited January 2012

    I've noticed a strange taste but I'm positive it started when I started taking Effexor. I'm surprised you get your shot in your arm, mine have all been in my abdomen, below my belly button. I have the injection nurse alternate sides.

  • seagan
    seagan Member Posts: 166
    edited February 2012

    I'm in week four of my first round of Zoladex and was doing fairly OK on it (mild hot flashes, some mood swings) until last weekend, when the hot flashes, night sweats, and then nausea really kicked in.  I'm due for my second injection tomorrow and am wondering if the SE's are likely to get worse or better over time -- can anyone speak to that?  From what I've read, it seems like for most people, things sort of ramp up for the first few months and then gradually diminish -- though for others, the SEs continue unabated.

    I was on Tamoxifen for 2.5 years, and in that case the SEs did seem to have a sort of cumulative effect, to the point where I asked to go off it.  My onc was OK with that given my Oncotype score and other factors, but would like me to do Zoladex as an alternative.  So far the Z seems easier to take than the Tam was at the end (biggest SEs for me there were cognitive issues and a sort of all-PMS-all-the-time feeling of irritability + sadness -- very fun, for my family too!).

    I'm 45 and had a recurrence one year ago, which thankfully was "only" DCIS this time (vs IDC the first time in 2009) but was in the same breast so I had to have a mast.  I opted for a bilat mast with no reconstruction, though I may do reconstruction later this year; I'm undecided.  Right now my treatment is limited to Zoladex and Zometa, though I'll finish up the latter's three-year course later this year.  If I stay on the Zoladex, I think my onc wants to add an AI alongside it.  Without the Zoladex, I'm fully premenopausal and my BC was strongly ER+, thus my onc's eagerness to "do something" if I won't/can't stay on Tamoxifen. We'll see if I can tolerate the Zoladex over time.

    So glad, as always, to hear others' experiences.  Thank you for being here and sharing. 

  • kt1966
    kt1966 Member Posts: 1,326
    edited February 2012

    Hi, I'm 46 (just) and have been on Zoladex & Letrozole for 7 months now. I've been having hot flashes, joint pain/stiffness upon first moving & tiredness (feeling 'older'). I can't say I look forward to the monthly injections & have just got some Emla cream to numb the area before my next injections.

    I was on Tamoxifen before this & had nowhere near the SE's. But I guess if its a choice between progression of cancer & SE's I'd rather have SE's...

    Oh & another SE I don't like is that I'm getting middleage spread- a layer of fat around my middle! I've always been slim with a relatively flat tummy- not any more Frown

    I keep getting letters from the gynaecologist- he wants to whip my ovaries out. I don't want to go there- the onc says ovaries are for more than just estrogen production- so I want them after menopause to do what they do! So hopefully by the time 5 years or so are up I'll be in menopause naturallySmile 

  • B123
    B123 Member Posts: 730
    edited April 2012

    I am on Zoladex and have my 4th shot tomorrow, I have done pretty well on it, just hot flashes but nothing i cant tolerate.  I was given effexor but havent used it.  My MO said I can stay on the shots for 2-3 years and go on an AI, now she said its best to do the surgery and remove the ovaries or have a hysterectomy and go on AI. I dont know which one to do, stay with the shots, remove the ovaries or have a total hysterectomy. I am 42 years old and I know I would have a ways to go with shots.  SO difficult!!

  • drbean13
    drbean13 Member Posts: 6
    edited April 2012

    I have been on Zoladex for about a year and a half, and I'm 29 now. I started Tamoxifen about a month before the Zoladex, so it's hard for me to separate the side effects. I will say that the side effects got significantly worse on Zoladex.

    Someone mentioned having nail problems. My nails were peeling significantly. I started taking Biotin (biggest dose I could find) and it works so well that most of the time I forget I ever had a problem with it. 

    I am still struggling with general aches and pains...it hasn't subsided for me like it apparently does for some. Actually, it feels worse than it did the first few months. I have one more shot in June and then I'm done, so I'm trying to be patient. I'm hoping the feeling of being an old lady will get better once I'm done with the shots. And the hot flashes...I'll be glad when that's over. Then I'll have only three more years of Tamoxifen. Smile

    It's so helpful to hear from others going through the same things...

  • MaxineO
    MaxineO Member Posts: 555
    edited May 2012

    Is anyone having problems with foot pain? I have had a pain in my foot for several weeks now, and it is worse when I sit for a while and get up.  I hobble along and eventually it loosens up a bit; I can't walk around barefoot, and it seems like I have to wear sneakers all the time to keep the pain away.  It's only one foot, and I don't think I injured it...

    My joints are certainly worse as time goes on: my knees are just terrible (they weren't any great shakes before these medicines), but this is really focused in the side of my foot.

    Thoughts?

  • sj29
    sj29 Member Posts: 68
    edited May 2012

    Hey ladies! I have a question that I need some input on badly! So I have been on Tamoxifen for 2 months now and just received my 2nd injection of Zoladex a few days ago. I waited a month in between so I didn't totally shock my system. I had no side effects of the Tamoxifen whatsoever. I then had the injection and just had some nausea the next day then nothing. I was so concerned that I asked my obgyn to order an estrogen level. I also got my period that same day (with the first injection). I was told it takes 3 weeks to drop your estrogen levels down to a menapausal level. I waited the three weeks, got my period, so got my level drawn and it was normal!! Ugh so frustrated so I saw my MO before my second injection and he said to give it another 3 weeks and see if it will then suppress my ovaries. We will draw another level and see if my period comes. I again and having no side effects (its been a few days) and am so worried this is not going to work...how long did it take any of you to stop your period??? Did you check estrogen levels??? He said if it doesn't suppress me this time around that we would have to look at Lupron, but he really doesn't want to do that. I am 26 years old and want children someday with my husband so taking everything out is not neccessarily an option I want to take at this time. 

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited May 2012

    sj29 - I had one more period after starting zoladex. Then it kicked in and I have not had one in 8 months. (one of the benefits of zoladex). I am 48, so not sure if the age difference comes into play or not. I also get the 3 mos injection instead of once a month.

    I hope that the zoladex starts to work for you and continues to do it's job. It, along with tamo, is doing a wonderful job for me.

  • MT1
    MT1 Member Posts: 371
    edited November 2012

    Do you folks feel like the Tamoxifen/Zoladex combo is making you have emotional surges? Highlighted emotions?

  • Ditasea
    Ditasea Member Posts: 27
    edited December 2012

    I was on Zoladex for two years, because the Tamoxifen didn´t stop my menstruation, and the onc was concerned about my high estrogen levels. The first year was gastly: wild mood swings (the emotional surges MT1 mentions), impatience, sudden burst of anger, no sex drive whatsoever, hot flushes, insomnia. The second year I managed to control the mood swings, and the hot flushes got more tolerable - still insomniac and no sex drive. In August I finished my treatment, but am still on Tamoxifen - but - worse news - today my menstruation is back (?!?!?!?!). I´m 45, and after all my hormonal system´s gone through, I certainly didn´t think it would ever come back. So I´m worried I might have to go back on Zoladex. 

  • MT1
    MT1 Member Posts: 371
    edited December 2012

    Ditasea, thanks for posting. Gosh, I hope I can get off this medication some day. I am younger than you, so i worry I might need to stay on the medication for longer too.

  • Equestrian4Life
    Equestrian4Life Member Posts: 5
    edited February 2013

    I took tamoxifen only for 5 years and just switched over to Zoladex and Anastrozole in November. I'm still trying to find my new normal. I have noticed mood issues and that is why I came to this board. With the Tamoxifen, my moods were steady as a rock. Now, I have the cry for no reason and flashes of anger for no reason that I seem to recall having when I was a teenager! It seems this occurs during the first week to week and a half after the shot. Then my emotions improve to steady again. Though I'm still not sure as I've only had three shots to date. I wonder if it's due to a spike or crash in hormones following the shot. I read one study online that seemed to indicate estradiol levels can rise immediately following the shot and then drop. My onc had no idea and my gyn said it could be either since women react differently to hormone changes. She said to come on in and get a blood test if I want to know. Hmmm.....my gut feel says my hormone levels are actually up immediately following the shot, based on all the other fun things like hot flashes, etc. The reason it matters for me is I'm debating having my ovaries yanked. If the emotional ridiculousness is due to low estradiol, then I will have a lot more thinking to do.

  • MT1
    MT1 Member Posts: 371
    edited February 2013

    I have the exact same symptoms that you do and my oncologist also has no ideas for me. I get weepy, emotional, rollover coaster-ish in the first few days to weeks after the shot. And I always have to gear myself up and remember that it may occur all over again. I try not to get involved with 'heavy emotional matters' at this time.

  • fredntan
    fredntan Member Posts: 1,821
    edited February 2013

    Hi

    I ammeeting with new doc in hr. A gyno oncologist to see if i should start lupron to shut my ovaries down. Had not heard ofzoladex. Sounds just fabulous! I am 45 on tamox. Havnt had period in yrs. Guess i am in menopause.

    Maybe i should just pass out warning notices to everyone at work.. great

  • rozem
    rozem Member Posts: 1,375
    edited July 2013

    bump

    anyone else with horrible zoladex SE's? 

  • Cassandreamy
    Cassandreamy Member Posts: 15
    edited August 2013

    rozem: I had sucky Zoladex SE's. I hope to never be on it again. I took it for 6 months to protect my ovaries during chemo... how long has your onc suggested you use it?

  • DancingVeggie
    DancingVeggie Member Posts: 118
    edited August 2013

    YO! I have had one injection and I feel like I'm 80. I am EXHAUSTED and STIFF. This is terrible. My hands and feet are just miserable and I can hardly get up and down stairs. I'm 40 with two children -- this will NOT do.



    Does anyone know if this means I'll be like this in menopause, too? Because I'm thinking about getting neutered (BRCA2 and ER+ liver mets).



    Anyone have tips for the joint stiffness/pain?

  • kyliet
    kyliet Member Posts: 687
    edited August 2013

    Hi dancing veggie. Pretty much the zoladex throws you into sudden menopause thats why the symptoms are so extreme. I definitely get worse bone pain if I dont do weight bearing exercise, I just walk but not often enough. Keep up vitamin d and calcium.

    My onc said results are same if you get ooph. I am finding getting to thedoctor every 4 weeks a huge pain and I feel rotten for about 2 days so I will be seeing if onc will change his mind and let me get an ooph.

    edited to add symptoms did improve a bit by 4th zoladex x
  • rozem
    rozem Member Posts: 1,375
    edited September 2013

    Hello all

    wanted to update to hopefully help others

    i had a second opinion about the shots to shut down my ovaries and she said tamox was enough

    my stats are below, diagnosed at 42 started shutting these puppies down at 44

    im done with them - they are killing me!

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