The AI+OS club

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shelleym1
shelleym1 Member Posts: 298

I saw there was thread for tamoxifen, femara, aromasin, etc but didn't see one for us premenopausal women that are doing Lupron or Zoladex along with an AI or Tamoxifen. I got my first Lupron monthly shot on 5/3. So far no side effects besides some fatigue and minor aches. I haven't started femara yet because I'm too chicken! Anyone else here just starting this,process too? Or if you have experience with it please share! I am hoping this will be tolerable.

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  • VioletKali
    VioletKali Member Posts: 243
    edited May 2015

    Hi! Yup, I am in the same boat. I am 32. This has been easy peasy, no problems at all.

  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    you've been on it since December? I'm so glad you're doing well. Hope I do too. I'm super nervous.

  • VioletKali
    VioletKali Member Posts: 243
    edited May 2015

    Yes. My Doctor cited the SOFT trial, it seemed like a very logical decision when I read it.

    I quit chemo after 4 of the 6 rounds, so I began the medications quickly. Nothing they offered me quelled the nausea, and my body hurt terribly. I told the Dr that no matter what, I have no regrets. I prefer quality of life over quantity, and IF it were to come back I would not be mad at myself.

  • VioletKali
    VioletKali Member Posts: 243
    edited May 2015

    My tumor was 1.7 cm, but they did not have that as an option.

  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    Yes, mine is quoting the SOFT Trial as well. I was expecting to be put on Tamoxifen so I was shocked when they recommended this. I guess I was a little unprepared mentally. Have you had any side effects yet?

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2015

    I'm doing Zoladex and Aromasin. I have some hot flashes, but they're relatively mild and I'd been having them since chemo put me in chemopause. The Aromasin made me moody so I'm on Celexa. I am also taking Caltrate (calcium supplement + Vitamin D) to preserve my bone density. I will be having a Dexa Scan soon to get a baseline for bone density so we can see whether the Aromasin is negatively affecting that. Otherwise, OS +AI has been uneventful for me.

  • readytorock
    readytorock Member Posts: 199
    edited May 2015


    I'm doing OS and Aromasin same as @ElaineTherese.  I plan to have my ovaries out in September as I do not want to have to go for a (painful!) shot every 28 days.  I'm having awful hot flashes (like 20 per day) and sweating, but was having those from chemopause anyway.  I can live with it if it will keep cancer away.  I am also having mild - not so mild bone/joint pain.  Wrists, elbows, hips, knees.  On a bad day (one so far) I took a Tylenol.  It has been about six weeks for me so far.

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited May 2015

    thanks for starting this thread! I was dx in December and had first Zolodex injection in January, 6 weeks before MX. The BS wanted to see if Zolodex alone would shrink tumors. MRI at 6 week mark show some reduction in tumor size, so clearly my tumor liked estrogen! I had substantial side effects from Zolodex including joint and bone pain. I'm 48, so maybe age increases these side effects. 500 mg of Aleve and Pilates helped with pain. I am now dying TC x 4 and taking glutamine. That seems to have really improved joint pain. Zolodex also caused swelling, so I'm on a diaretic. I will most likely be on aromasin when I finish chemo. Any thoughts on Aromasin versus other AI's? Very worried about bone density. Can you have occasional alcohol on Aromasin or is it too risky to bone loss. (I know alcohol is not great for my ER+ status anyway, but just curious what your docs have said). I have a child with osteopenia, and we looked at fosomax for him. Nasty stuff that I'd like to avoid!!

  • Professor50
    Professor50 Member Posts: 220
    edited May 2015

    I'm on lupron + exemestane. So far, my only complaint is joint issues that feel worse. Otherwise, hanging in there. (Definitely hoping to avoid fosomax too!). My first dexascan (baseline but after 1 month on this combo) was normal.... All good so far.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2015

    Professor 50,

    How long did the Dexa Scan take? My kids are getting out of school, and I'll have to arrange childcare for my medical appointments.

  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2015

    Next week I'll be getting my third Zoladex shot. I've now been on Arimidex for four and a half weeks. My only SE seems to be fatigue. I wasn't sure if that was from the OS, AI, or the fact that the weather got much warmer and I exercise 6-7 days a week. My MO was planning on putting me on Aromasin because that is what they used in the SOFT trial. The cost was going to be significantly more so we decided on Arimidex. I'm planning on getting an ooph in Sept/Oct. I don't want to continue getting shots either.

    ElaineTherese, I had my Dexa a while back. It's really easy. You lay down, they put a wedge under your knees and take a couple pictures. I think I was only in there about five minutes. If you wear pants/shorts without metal, you can wear your own clothes.

  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    I'm so glad this thread is getting responses! I feel like most people are just on Tamoxifen or AI but not OS too.

    Elaine - my DEX scan took 5-10 minutes. You don't even have to get undressed. Just take off your shoes and lay on a table. Super quick. My onc prescribed Celexa but haven't started it yet. Have you had any side effects from that? Do you think it helps with hot flashes?

    I'm not wanting to remove my ovaries yet since I don't have children. I was hoping my onc may give me a reprieve at some point to try to have children. Not sure if it will really happen yet or not. Until then I guess I'll just hang on to my ovaries

  • Professor50
    Professor50 Member Posts: 220
    edited May 2015

    Yup, my dexa took about 10 minutes max. (I probably had to wait longer than the thing took to do). All told, I was done within 20 minutes tops. It's easy as pie. You just lay on a table very still. I did that knee thing, then I my feet (one at a time) against this odd piece of plastic so my hips hips would swivel out. Also, I was wearing jeans with a metal button and I was able to keep them on--just unbutton them a bit.

  • alaskamama
    alaskamama Member Posts: 91
    edited May 2015

    Hi all,

    I've been on Lupron and Femara for about 14 months . My case is a little strange (aren't ours all...) because I developed an inflammatory heart issue that required prednisone, and I've been trying to wean off the prednisone for over a year now. I was feeling pretty good about the fact that I didn't seem to have a lot of side effects from the double-dose crash-course menopause but I suspect the steroids have been masking the side effects.

    This week, as I notched my prednisone down to the lowest it's been since I started them, I developed weird pains in the bones on top of my feet. I was wondering if it was the 5K I ran last weekend (which is not unusual) and then realized with a sinking feeling this may be my new reality when I get off steroids. I can hardly walk, much less run! Just read about fish oil supplements and hope to try that.

    Good luck to everyone.

  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    Alaskanama I hope your feet improve.

    Did any of you have a period after your first Lupron? I'm feeling crampy.

  • Lovemysons
    Lovemysons Member Posts: 31
    edited June 2015


    I am currently receiving zoladex injections and plan to eventually have a hysterectomy.  Last week after I received two zoladex injections and was ready to begin the aromatase inhibitor, I suggested my oncologist test my estradiol/estrogen level.  Turns out it was 292 which is high considering I only have one ovary and that was supposed to be suppressed.  I received the third zoladex injection after the blood work that day.  My gyn wanted to have my levels checked again a week later and today the estradiol/estrogen level was 15.  Any ideas as to what may have cause such a big difference.  Could it be that I metabolize the drug faster than others and since I was due for injection the day they drew blood, the drug had already worn off.  Maybe I should get the injections every three weeks instead of every four.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015


    Shellym1 -- Sorry to be just answering your question re: Celexa. I don't think it does much about the hot flashes, but it certainly has evened out my mood swings. For the first time in months, I feel productive! Have you tried it yet?

    Lovemysons -- Gosh, I have no idea. I haven't had my estradiol/estrogen levels checked at all. Since I was getting my periods before chemo, my MO just assumed I was premenopausal.

  • lauren32
    lauren32 Member Posts: 46
    edited June 2015

    hi lovemysons your story reminded me a bit of my own as I've had one zoladex injection but the one that lasts for three months. I am now just over six weeks post that injection. I am also on aromasin now. . When they tested my estrogen three weeks after the injection it was 455. I also had a light period last week. Then this week my levels are less than 55. I don't think the test I had is sensitive to read lower than that but I'm not sure. I think it just takes a while to sometimes get our bodies in sync with the drugs and then they start to work. I was all worried thinking the zoladex wasn't working and now it seems to be. My onc did say I may go onto the four week one seeing as they took a while to come down. I think your next test will be lower!

  • lauren32
    lauren32 Member Posts: 46
    edited June 2015

    Sorry I see yours had come right down too!

  • lauren32
    lauren32 Member Posts: 46
    edited June 2015

    shelley did u end up having your period? Mine was very light my oncologist said it can be a withdrawal bleed after the first injection

  • shelleym1
    shelleym1 Member Posts: 298
    edited June 2015

    yes I had it for about four days. It was actually heavy at first then got really light.

  • shelleym1
    shelleym1 Member Posts: 298
    edited June 2015

    my estradiol prior to Lupron was only 129. Seems kind of low compared to everyone who posted.

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited June 2015

    shellym1 - My estradiol was 8 the first time they measured it in January, but I'm 48 and had been on the pill a long time. I get it retaken next month and will be curious to see what it is after 6 months of Zoladex. Would like to avoid the Zoladex if I don't truly need it.

  • pboi
    pboi Member Posts: 663
    edited June 2015

    bump...

    I'm premenopausal and considering OS + AI. Any other thoughts/experiences to share?

    PB

  • katcar0001
    katcar0001 Member Posts: 621
    edited June 2015

    Yikes, my estradiol was 468, and I am 51. I guess I'll re-test. I understand different labs have different ranges, but to be post-menopause I need to be under 29! I am on Tamoxifen currently. None of my docs will consider OS for me but I want it! I guess I'll keep pushing on them.

  • lauren32
    lauren32 Member Posts: 46
    edited August 2015

    Anyone battling with weight gain? I lost weight on chemo but have definitely put it on during my three months of aromasin and I'm exercising regularly and eating healthy most of the time! At 32 this doesn't feel fair!

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited August 2015

    I gained on Zolodex which I started in January, then held steady through chemo May - July. Started tam today and will switch to an AI in January (long story on that one) so I'm going to try to lose now, but know it is going to be a super uphill battle. Hard to diet right after chemo when you are so weak anyway. Just trying to eat super healthy and no bad stuff and see where it goes.

    Anyone else have really stiff and sore feet, knees and hips when you first get up or after sitting for any length of time. I'm 4 weeks PFC and I don't think it's from the chemo, but rather the Zolodex.

  • maxdog
    maxdog Member Posts: 147
    edited August 2015

    I'm so glad to have found this thread! I had my first Lupron injection 7/30. No hot flashes for me-i have been freezing. Also, started heavy bleeding yesterday and very crampy-I feel awful. Next injection at the end of this month +start Arimidex. I'm trying not to read too much about side effects....don't want to freak myself out! I had post op DVT, so no Tamoxifen for me. Every day brings something new it seems!

  • pboi
    pboi Member Posts: 663
    edited August 2015

    I had my first Lupron 7/27. Had a few hot flashes/night sweats but was having those from chemopause. On my 6th day of anastrazole (Arimidex) and haven't noticed any side effects from that yet, but it's only been a few days. Hoping I will tolerate it well.

    PB

  • cider8
    cider8 Member Posts: 832
    edited August 2015

    I've been on zoladex and arimidex for over 1 1/2 yrs. it seems to be working! I got a recurrence and new primary while first on tamoxifen. I'm 44 now. I have terrible fatigue and sleepiness, plus all those aches, stiffness and sore feeling muscles. Low thyroid to boot. After all the treatment I've been through, I'm glad the OS and AI are working. I vascilate between being sad about lower QOL and being thrilled with NED. My daughters are 11 and 14. I need more time being mom! I have been gaining weight but also not watching my diet or exercising. So tired! But I hope to improve when school starts again. My DEXA is in a few weeks. I'll be eager to see how it compares to my baseline from 2 years ago

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