Nervous about starting Zoladex

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EstelaLorca
EstelaLorca Member Posts: 98

Hi everyone,

I'm feeling pretty hesitant about starting a Zoladex regime, in fact I just don't want to do it. I've had a rough go, finished 6 rounds of taxotere in April and the worst side effect has been pleural effusions, and major water retention in my legs. My lungs have been drained twice (and tested, no malignant cells) and I just feel traumatized from the whole experience. I just want to bat away all the doctors and runaway. I guess I'm mentally, physically, and spiritually exhausted.

So plan is tamoxifen + Zoladex until I get my ovaries removed (which I want to wait a bit for because I still have fluid in my lungs and I just want to feel healthy before I do surgery).

My mo is really pushing the Zoladex, I've been begging for a break since chemo was completed and I know ultimately it's my choice (I would do tamoxifen because I've done it before and know what to expect) However my body is just screaming NOOOOOOOO!

I guess I would like to hear from people that have done Zoladex or are on it. Any serious side effects? Any experience with it would be greatly appreciated.

Thank you

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Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2016

    Hi!

    I've been on Zoladex since February 2015. It involves a monthly shot in my stomach area. The needle is big, and it pumps a pill into my gut. The nurses are always apologetic; they seem to think that I must be in awful pain because of the size of the needle. It doesn't really hurt more than any other shot, but I've heard of some nurses numbing the injection site with lidocaine for other patients. I don't ask for a numbing agent myself.

    I started my Zoladex at the same time I began Aromasin, so I can't really tell what side effects are what. I've had hot flashes and moodiness (which has since been addressed with Celexa). Other than that, nothing. By the way, my hot flashes have faded as time has gone on.

    Sorry that chemo was so rough on you. I do think that your doctors should give you as much time as you need to recover from one treatment regimen before starting a new one. Best wishes!

  • fd1
    fd1 Member Posts: 239
    edited July 2016

    Hi EstelaLorca!

    I have been doing Zoladex shots since my period came back about a year after chemo - three years now I believe. I was taking tamoxifen before that and felt no additional side effects with the Zoladex. In fact, I felt better as my periods were so heavy on Tamoxifen! It is a pain to go get the shot every month but studies have recently shown Z+T is better than T alone for premenopausal women. My MO recently switched me to Exemestane from Tamoxifen as the same study showed this combo even more effective. That's been another story - I have been so tired.

    I feel your pain about just never wanting to see a doctor/nurse again, but trying it for a few months can't hurt! You can always quit after.

    Best of luck. xoxo.

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Thank you so much Elainetherese and fd1 for your input. I've been having such bad luck with side effects from chemo.

    Wish me luck xo

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited July 2016

    I too was on a T + Z regime for about 15 mos till my ovaries were removed. I had no major SE's' to speak of. If you can swing it, there is a shot that you can get every 3 mos instead of monthly. (I was on the 3mos shot). The injection did hurt but only briefly.

    As mentioned, you could try it and see how your body handles it.

    Good luck

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Thanks barsco1963 - I have a couple of questions if you wouldn't mind.

    Just curious, why'd you wait 15 months for an oophorectomy? And how was the recovery time for that procedure? Did you notice any major physical changes from chemical shutdown of ovaries to just having them removed?

    Just trying to mentally prepare the next steps. Thanks for taking the time to respond.


  • Irish65
    Irish65 Member Posts: 18
    edited July 2016

    I have an appt at 2pm today for my first Zoladex injection (the 3mo shot) and to get a script for Arimidex. Thanks for the reassurances - I've been nervous all weekend! I plan to have ovaries removed if the Zoladex/Arimidex goes okay but thought it better to start with a reversible plan just in case. I'm curious about experiences with ovary removal surgery as well. Thanks!

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Irish65 - my appointment is at 1:45pm today for the shot also, I guess we can be in each other's pockets this afternoon.

  • Irish65
    Irish65 Member Posts: 18
    edited July 2016

    What a coincidence! Good luck! Let's try to check in later today? Even though I put more thought into this than any other aspect of treatment I think I am still more nervous about this than any other part.

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    irish65 - yes let's check in later today. I'm going to try to go for a walk to clear my mind. Good luck to you too

  • ErenTo
    ErenTo Member Posts: 343
    edited July 2016

    Good luck with your shots! My trick is to close my eyes and it works. I haven't seen the needle yet and don't plan on seeing it either :)

  • Irish65
    Irish65 Member Posts: 18
    edited July 2016

    Estela- hope your injection went well! Mine was fine. She numbed the area with lidocaine first, which I'm sure helped. I started making a list of things that were worse: getting a shot of novacaine, especially in the front gums, getting my ears pierced, getting a tattoo, eyebrow/lip waxing, etc. Now I guess there's nothing to do but wait and see if I get hot flashes. The Arimidex was sent to my mail order pharmacy so I have at least a week or so reprieve on that one!

    Eren- I ended up seeing the needle inadvertently. I won't give you a visual but I will say it wasn't as bad as the cartoon style 10 inch long needle I was imagining!

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Irish, I agree it wasn't as bad as I thought it was going to be. They gave me this numbing patch thingy to put on from home beforehand. I'll feel much better about it after 72 hours though (I don't know why those rare side effects mentioned scared me so much, I guess cause I still have some fluid in my lungs and it's been awful). I'll most likely start the tamoxifen tomorrow.

    So funny Irish, I also visualized this long cartoonish needle and I did take Erento's advice and not look but the nurses were talking about it as they were injecting it which totally gave me a visual, which I won't repeat here lol.


  • ErenTo
    ErenTo Member Posts: 343
    edited July 2016

    Glad to hear it wasn't too bad for you guys! I'm due for my 4th on Thursday. I can say I'm almost side effect-free on zoladex (so far). I was on tamoxifen when I started this and then a month after the first shot started Aromasin, so had a chance to isolate side effects. Hot flashes gradually started by the time I was due for the second shot and then I'm guessing increased with Aromasin. But it's not too bad really, and it's summer.

    So as long as tangible side effects of this treatment are concerned so far not too bad. Wish the same for you

  • LM070917
    LM070917 Member Posts: 323
    edited July 2016

    Hey, I started zoladex in May and I will have it adminstered every 6 months whilst on al. My doc advised it reduces of the risk of bone metastatics and protects bone density. I was a bit hesitant esp after hearing about potential jaw necrosis, but it's actually not that bad at all. Just keep regular dental hygiene and SEfrom zoladex are minimal in the grand scheme of things

  • Irish65
    Irish65 Member Posts: 18
    edited July 2016

    lottemarine - I think you are thinking of Zometa? To prevent bone loss. Zoladex shuts down the ovaries.

  • LM070917
    LM070917 Member Posts: 323
    edited July 2016

    apologies ladies, I was on autopilot this morning whilst on my commute to work and totally misread that

  • Irish65
    Irish65 Member Posts: 18
    edited July 2016

    no apologies necessary!

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Hi, I just wanted to post some "observations" after my first shot of Zoladex

    Day 1 was ok, nothing really to report

    Day 2 - I was really tired, just felt like lying in bed all day. Maybe (no I was) a little depressed. I also felt like I was having cramps or upset tummy.

    Day 3 (today) I'm not as tired, a little crampy and feeling down but this could be weather related as it has been gloomy and humid for the past couple of days. Just downright unmotivated to do anything.

    Anyways, I just wanted to share and see if it's just me or some chemical doing stuff to my body.

    Trying to stay strong, much love xo

  • Irish65
    Irish65 Member Posts: 18
    edited July 2016

    thanks for sharing Estela! I haven't experienced anything I can reasonably blame on the Zoladex. I too was feeling a little depressed/a lot cranky on day 2 but I felt the same way over the weekend (and have been on and off for weeks) before the shot on Monday so I think it's unrelated. I also had a slight nagging headache all day yesterday but my allergies have been bothering me so not sure if that is to blame. At age 50 and not having had a period on 4 months, I think my ovaries were on their last legs anyway so maybe that's why I'm not having more "sudden menopause" type. symptoms.

    I picked up my Arimidex yesterday and plan to start Saturday.

  • KateB79
    KateB79 Member Posts: 747
    edited July 2016

    My first Zoladex corresponded with some ovarian pain (like I was ovulating), but I've read that can happen. I think it's because my ovaries are stubborn girls, indeed, and they were having their last party before going to sleep for a while.

    My doctor wasn't concerned, especially because the pain went away after about ten days.

    The hot flashes were worse for the first week or so, too, but have leveled off to my pre-Zoladex tamoxifen number (about 2-3 per day with another 2-3 at night).

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Thanks for sharing KateB79, cramping seems to have subsided now but still feeling really tired. I had a 3 hour nap today, which was kinda nice I'm not gonna lie.

    Irish, was thinking of starting tamoxifen this wknd as well. I guess I'm slowly wading into the waters...

  • crazemaze
    crazemaze Member Posts: 10
    edited July 2016

    I had my first Zoladex shot last month and had side effects ( depression, moodiness, horrible period cramps). I also am curious about the 3 month shot? I asked my doctor for this option and she said the 3 month shot was not as effective? I travel frequently for work so the 1x month shot is very difficult for me... The shot did not hurt that bad and I used lidocaine prior to. Any comments on the 3 month shot? i can't start the AI for few months and really not looking forward to doing this.. thanks in advance!

  • Mel_Kirei
    Mel_Kirei Member Posts: 9
    edited July 2016

    hi crazemaze! I'm on the 3 month Zoladex shots since May last year. As such I don't think it's not necessarily a worse off situation if you're on it than 1 month.

    My experience on zoladex and Aromasin has been interesting. I can still say I am lucky as I didn't get too much side effects. But last year, 3 months after my first shot, I went through depression and diagnosed with alopecia areata and Hashimo.. Both auto immune diseases

  • Catherine3
    Catherine3 Member Posts: 26
    edited July 2016

    Zoladex opinions ..,help!!

    so I moved and my dr's at one hospital had recommended one post chemo treatment and the other hospital recommended something different. I was planning on going on Tamixifin for 5 years as standard care and that was what my dr recommended at my last hospital. My new dr says he wants to give me Zoladex shots and pill because it lasts 10 years rather than 5?

    I am thinking about just getting a hysterectomy and if I do then my last dr recommends Femara.

    I would love to hear any good, bad, or ugly experiences and what opinions you all have out there who have used these drugs. I cannot decide what to do. Probably cause I just came back from my last chemo!!! Yeah!:

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Hi Catherine,

    I'm new to Zoladex so I don't have a lot of experience with it yet, however it's not something I want to do for a long period of time. I just don't like the idea of more chemicals in my body (that's just me). My MO believes this combo is more effective for my type of cancer.

    My MO also recommended getting ovaries removed then she will put me on another drug (I think it's called aromatisn spel?) which she again believes is better than tamoxifen. I'm pretty sure I'm going to remove my ovaries.

    My concern is my bones. Osteoporosis runs in the family and I've addressed this to my MO who has assured me that she wouldn't let thathappen. I'm not really sure how she's gonna do that yet but it's definitely a question I intend to ask her.

    Making this decision is challenging, especially when you are just finishing chemo. I pushed back my Zoladex shot for weeks because I was feeling so awful. Continue to research and write down your questions and concerns for your MO and hopefully together you can make a decision. Otherwise take time to heal, good luck!

  • awilson
    awilson Member Posts: 25
    edited July 2016

    hi crazemaze I'm a little behind on the dates but I am too will be having my first shot of zoladex. I'm terrified of the se. I am stage iv and have been for a couple of years but have been doing everything naturally. I just stated promidrinate. I tried it last year for a few months but it gave me bad se. I am trying the promidrinate again and having my first zoladex shot. I would like to know your se I will let you know mine. I am also from Winnipeg :)

  • EstelaLorca
    EstelaLorca Member Posts: 98
    edited July 2016

    Hi awilson, I've only had one "shot" of Zoladex and so far I've experienced cramping, tiredness, and depression. However, I've Been depressed for awhile, and I'm getting over chemo so that can explain the exhaustion. I was really scared too, I even pushed it back a month because I was feeling so bad. Next shot is a little over a week.

    I'm from Winnipeg too!

  • awilson
    awilson Member Posts: 25
    edited August 2016

    hi estelalorca. I will let you know if I get the same se. I'm also supposed to be taking letrozol after the second shot of zoladex. There's gotta be something else out there naturally that can balance your hormones without these drugs. I'm going to do some research. Nothing is guaranteed, not even the drugs so I'm going to do some research.

  • Irish65
    Irish65 Member Posts: 18
    edited August 2016

    I had my first (3 month) shot of Zolodex on July 11, 2016. So far no side effects to speak of. I started Arimidex the Saturday after the Zolodex shot and so far no/minimal side effects from that either. I did have a slight headache a day or two after the shot but if could have been a sinus headache, not sure. I have been really lucky - not even any hot flashes! I'm planning on having ovaries out also, just need to schedule it around vacations and reconstruction on non affected breast.

    awilson - its not really a matter of balancing hormones, its a matter of virtually eliminating estrogen from your body so any remaining/developing cancer cells can't feed off of it. Although I'd love a natural alternative, I don't expect there is one out there to eliminate estrogen like the Zoladex/AI/ovary removal does. I decided I would try it and see how bad the side effects are. So far, so good. If they ever get to the point that the higher risk of recurrence is worth the effect on quality of life, I'll reevaluate.

  • awilson
    awilson Member Posts: 25
    edited August 2016

    hi irish65. I'm getting my first shot on Wednesday. fingers crossed I do not have any bad side effects. Hope I luck out like you. I will keep you posted. Thanks for you input I greatly appreciate it:

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