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Bottle o Tamoxifen

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Comments

  • jpr143
    jpr143 Member Posts: 19
    edited October 2016

    Hi all! I went on Tamoxifen in Oct 2015. I began having pelvic pain in mid December. I mentioned it to my MO and of course he didn't think it was the tamoxifen and said I should see my GYN. He found two cysts and an endo lining of 14.7mm. He didn't think this was causing my pain and referred me to a urologist. The tests at the urologist came back normal. So, back to MO. He had me take a 3 month break from tamoxifen. My pelvic pain went away in about 3 weeks. After a 3 month break, in May he tested my FSH which was 45 and estradiol was 31. Since estrogen levels rise and fall a lot, my MO didn't feel comfortable saying I was in menopause and wanted me to restart tamoxifen which I agreed to try again. Before I restarted, I had a follow up with my GYN. Endo was 17.4mm onTVUS in July. I restarted tamoxifen Aug. 10 th. About 5 weeks later, I started having pelvic pain again. This time I also had cramping and a little brownish discharge. So back to the GYN. Endo is now 20mm (October),I have a cyst on my left ovary again and he saw some cystic changes in my uterus. My GYN was going to do an office biopsy of my uterus but decided it best to do a hystercopy and D & C. I'm a little nervous about this test and what the biopsy may show. It is scheduled for Nov 18th. My doc also did FSH again and it is 32. He thinks I am officially in menopause. I am prepared to let them do a total hyster and hopefully be done with this mess.

    Anyone had experience with a hysterscopy and D & C? Anyone know how to interpret the FSH and estradiol numbers? Seems to me ovaries aren't working so why would endo thicken even off of tamoxifen? I am overweight. Does fat make that much estrogen?

    Scottiemom1, what kind of anti inflammatory diet are you doing?

    Sorry for the long post. 😊



  • reckless
    reckless Member Posts: 50
    edited October 2016

    I had hysteroscopy with D&C 2 weeks ago due to spotting between the cycles. I've been on tam for 4 months. The procedure is not a big deal, I had some cramping for a week after, easily controlled with ibuprofen. Was at work the next day, no issues. Waiting for the results was stressful, thankfully it was benign. I grew a large fibroid and ovarian cysts since starting tam though. These were not on my TVUS done 7 months ago. Sorry, don't have answers to your other questions.

  • lala1
    lala1 Member Posts: 974
    edited October 2016

    Tamoxifen gave me the gift of thickened lining, ovarian cysts, fibroids and an enlarged uterus. After many months of watchful waiting and worsening issues, I had a total hysterectomy with ovary removal which was done laparoscopically. Best decision I made through all this! I was 52 at the time but not yet menopausal and looking like it wasn't going to happen anytime soon. Easy surgery, easy recovery and now I just feel really really good. And at least I don't have to worry about all that stuff anymore!


  • Lovinggrouches
    Lovinggrouches Member Posts: 346
    edited October 2016

    I had total hysterectomy one month after completing radiation and before starting tamoxifen. Already had d and c before and had thickening with chronic cysts, so oncologists recommended to take everything out since I will be on tamoxifen for ten years . I'm 42 and now post menopausal, but they want me to stay on tamoxifen for my bone and heart health since the the other class of drugs completely blocks estrogen. The choices: possibly have recurrence of cancer since I still have some estrogen or develop heart problems and brittle bones. That's something!! At least I took out the possibility of uterine and ovary problems!!! I've had four months of chronic abdominal pain because of that decision. Hope it's worth it in the end!!!

  • jpr143
    jpr143 Member Posts: 19
    edited October 2016

    Reckless: what type of anesthesia did you get?

    Lala1 and lovinggrouches: what was your recovery like?

    Thanks for your input ladies!

  • Lovinggrouches
    Lovinggrouches Member Posts: 346
    edited October 2016

    ipr, I was out of work for six weeks. They kept me on morphine until the next day. I had bikini cut with everything, even cervix out. My surgery was June 9th. I healed well, but I still have pain every day because I sit down most of the day. The only time I'm not in pain is at night and when I wake up in the am until after about an hour of sitting. Everybody heals differently. Some have pain for months, others only a few weeks. I hope all this is worth it in the end with keeping any further cancer at bay!!!! At least I won't have anymore periods or bleeding problems, that is a plus!!

  • lala1
    lala1 Member Posts: 974
    edited October 2016

    jpr143---I had a totally different surgery and recovery from lovinggrouches! Mine was a total laparoscopic hysterectomy which included the cervix and the ovaries. I had 3 tiny incisions in my belly and then the cervix removed vaginally. I spent one night in the hospital and went home the next afternoon once I passed gas. Only had one time in the hospital during the night that I really felt pain and asked for drugs. I was sent home with prescription strength ibuprofen which I took that night I got home and then the next morning. After that I took regular tylenol for one more day then no more pain meds. I was walking a total of 30-45 minutes a day by day 3 and driving by day 5. I still took it easy and tried not to lift too much. My doctor told me I'd feel great by day 10 which was the problem with his patients because then they tended to overdo it and set themselves back. He was spot on! By day 10 I felt so good that I swapped the wet laundry from the washer to the dryer and by the next day was really paying for it with pain. It was enough that my doc had me come in and he made me have a pelvic CT just to be sure I didn't tear something. Turned out I pulled a muscle in my back! (I'll listen to him from now on!) Couple of days of Tylenol and I was good. I was back at the gym, albeit only on the treadmill, after 2 weeks and got the all clear from him at 8 weeks. And I've never looked back. I feel great and if it wasn't for this damn Tamoxifen making it so hard to lose weight, I think I'd be doing even better. I never had any real bleeding after the surgery, only spotting for a few days and I never had any gas pains. Probably one of the easier surgeries I had! But....that was me. Your mileage may vary. Winking

  • jpr143
    jpr143 Member Posts: 19
    edited October 2016

    Thank you for your replies. Speaking of weight, I've got a lot I need to lose. Anybody been successful losing weight while on tamoxifen?

    Thanks

  • lvbugs
    lvbugs Member Posts: 35
    edited October 2016

    i have been able to lose weight while on tamoxifen and even after having hysterectomy. I do exercise everyday and pay attention to what I eat. Try reducing carbs and sweets

  • tbalding
    tbalding Member Posts: 383
    edited October 2016

    I've lost about 10 lbs. Track what I eat on MyFitPal free app. Watching fats, calories. Exercise 3-4 times a week. Track exercise & steps on Fitbit. It helped that at the same time I started trying to lose weight & eat healthier, my Zumba class started a healthy weight loss challenge, so I had buddies to encourage me.

  • superius
    superius Member Posts: 310
    edited October 2016

    I had dropped about 15lb since last summer. Maybe half of that since Tamoxifen. cutting carbs, more active.

  • Noni
    Noni Member Posts: 74
    edited October 2016

    Hi ladies. I posted a question regarding tamoxifen and stage iv here. Would you please have a look and chime in? I need some advice.

  • reckless
    reckless Member Posts: 50
    edited October 2016

    jpr143: I do not know what type of anesthesia I was given for D&C, all I can say, it was general anesthesia

  • MJS1266
    MJS1266 Member Posts: 159
    edited October 2016

    IPR143,

    I had a laproscopic complete hysterectomy with ovaries removed last October.  I had to take it easy for 6 weeks but had no serious problems.  Not sure what I had for anesthesia.  I did have oxycodone for pain meds which didn't agree with me and I had to stay an extra night in the hospital.  When I went home, I just used ibuprofen.  Fortunately, I haven't had any problems since.

    Also, I have lost 55 lbs since starting Tamoxifen over a year ago.  Still working on it and want to lose another 25 lbs but going is slow.  Good luck, MJS

  • boston2015
    boston2015 Member Posts: 3
    edited October 2016

    I have been taking tamoxifen for 3 weeks and have hot flashes. But I have also have chills. I almost feel like they are worse than the hot flashes? Does anyone else get chills? Do they get better? They sometimes keep me up at night.

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited October 2016

    Hi Boston,

    You're not alone! Chills were worse for me than hot flashes and night sweats. They did seem to lessen over time. I was on tamoxifen for almost three years. I still follow this thread even thoughI'm no longer on tamoxifen because of other issues. Just got my second Zoladex implant today and will start letrozole in a couple weeks. :-)

  • jpr143
    jpr143 Member Posts: 19
    edited October 2016

    MJS1266,

    Thanks for the reply and Congrats on your weight loss! Are you doing any special diet or way of eating

  • Andraxo
    Andraxo Member Posts: 168
    edited October 2016

    Boston2015 - I get both hot and cold flashes - they are equally bad. I go from hot/sweating to shaking with cold. I'm shivering as I type this! In a half hour I'll be taking off my sweater complaining about how hot it is. It happens during the day and at night (keeps me up). I've only been on Tamoxifen for 4.5 months so I don't know if those symptoms will get better. Med Onc tells me the symptoms are worst the first year, so I'm hopeful by next summer they will mellow out. I upped my medical cannabis tincture at night (went from 5 drops to 10 drops, but the dosage is supposed to be an entire dropper full) for the past 2 nights and I slept better (made it to 4 am instead of 2 am). Some nights I take more melatonin (usually take 5mg, but sometimes add an extra 3mg time released). The melatonin/medical cannabis combo works enough that I still won't try anything prescription for sleep.

    - xo

  • ksusan
    ksusan Member Posts: 461
    edited October 2016

    Hi, Boston. I get both hot and cold flashes.

  • Yaguarete
    Yaguarete Member Posts: 22
    edited October 2016

    Boston2015: I have been taking tamoxifen for over a month now and YES, the chills!!! They're not as bad at night (I sleep perfectly), but there are times during the day I can't stop shivering, no matter how many jumpers I'm wearing :) Unlike otheres, I've never experienced a hot flash yet.

    I believe the tamox is not the culprit here, though. I'm also on ovarian suppression (monthly shots of triptorelin) and, since the estrogen helps to mantain body temperature and increases blood supply to the skin, I think that's the reason for my "cold flashes". I hope my body get used to my new hormonal scenario soon!!

    Best wishes to all

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited October 2016

    Boston2015. . .for months, I went from freezing cold to burning hot, especially at night. No sweating though. I've been on Tamox for 22 months and when I started taking turmeric with bioperene and ginger these transitions got better. They also decreased when I switched to an anti-inflammatory gluten-free diet 7 weeks ago due to LE.

    Scottie

  • superius
    superius Member Posts: 310
    edited October 2016

    i haven't have any hot/ cold flashes for about 2 months. once in a while a warm flush, but I am not sure it's Tamoxifen, since I lives in S. California, so it IS warm!

    don't know if it has anything to do with it, but I have been putting turmeric, ginger & black pepper in my coffee (it's quite nice, actually)

  • MJS1266
    MJS1266 Member Posts: 159
    edited October 2016

    Thanks, jpr143,  I'm going to Jenny Craig and working out like crazy at the gym.  I'm losing very slowly now but am determined to keep on, one of the few things I can do to reduce my risk of recurrence in addition to taking Tamoxifen.  Good Luck.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited October 2016

    I don't like hearing that their doctor said that, "there is a low chance of reoccurrence."

    Ladies, please.They are not god.

  • moderators
    moderators Posts: 8,643
    edited October 2016

    Hi Yaguarete,

    Welcome to the BCO Community and to this thread Winking

    Thanks for sharing your experience with Tamox so far.


  • Blownaway
    Blownaway Member Posts: 662
    edited October 2016

    Hot cold hot cold hot cold... I went into the pharmacy and started to complain to managment that it was cold enough to hang meat....sure enough, by time I left, I wanted the AC turned up. This is our new normal, ladies! Tamo gives me headaches that come and go all day also.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited October 2016

    I have also noticed I don't have the same tolerance for temps either. I used to love the heat now I don't, and anything under 70 feels SO cold :) but on the plus side no real hot flashes, maybe just baby ones Happy

  • trvler
    trvler Member Posts: 931
    edited October 2016

    I find that the chills come first followed by a hot flash. I notice it I don't get cold, I don't get as many hot flashes. I just came back from the S. California desert and rarely had any hot flashes, which seems kind of odd. I also find that just sitting still brings on the cold followed by the hot and the more I move around, the better it is.

  • CJSharma
    CJSharma Member Posts: 305
    edited October 2016

    I rotate through hot flashes and chills. I swear I never know if it's cold or hot any more, because regardless of the temperature, if I just wait 15 minutes, I'll be the opposite.

    Other than hotflashes - it's been 3 weeks and I've been fine. I did find, by accident, that Claritin really seems to help with my joint pain. Mine is still left over from Taxol, but with Claritin it's manageable and I don't want to curl up and cry.

  • Sheri64
    Sheri64 Member Posts: 34
    edited October 2016

    I started a turmeric supplement on Friday and I already feel my joints being less stiff when I get up.

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