Spring 2018 Starting Hormone Blockers

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  • Veeder14
    Veeder14 Member Posts: 880
    edited May 2018

    Hi flowergal,

    I'm having pelvic ultrasounds because I'm BRAC2 and high risk for ovarian cancer. My Onc obgyn said everything looks fine. Now with having to take Tamoxifen (haven't started yet) ovarian cancer is a risk factor. I'm really uncomfortable with this but I don't want more surgery right now. The blood test CA 125 is also a tumor marker check. My doctor said he can justify these up to 4x/yr.

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  • JosieO
    JosieO Member Posts: 314
    edited May 2018

    Hello everyone,

    Just starting my radiation, so won’t start AI until late June, but already met with the oncologist and we have decided to start with Arimidex (anastrozole).

    Was advised to increase my exercise to help ward off side effects, so thought i’d start now.

    Have also focused on more veggies, cooked and raw. Won’t add any supplements until radiation is finished, but will be following all of your comments.

    Glad to be here with all of you

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  • GraceFrancis
    GraceFrancis Member Posts: 14
    edited May 2018

    Hi kaywrite,

    I am Grace Francis who just joined this week. I had lumpectomy right breast, stage 1 then 30 radiation treatments. Then March 8th retina surgery, so I couldn't start Arimidex. Only made it 14 days when my joints tight, knees and legs blew up. Weight gain is up 8-10 lbs. Stopped meds and visited children in FLA. All WAS FINE AFTER 2 WEEKS OF NO MEDS. i LOOKED LIKE A CRIPPLE AT 61. Then went back to oncologist and started Letrozole. That hit me worse on day 20. Stopped it this week 4/30/18. They drs sent my to cardiologist, who feels its meds related. As precaution, getting and Echo and Stress test in a week or so. This wed May 9th back to oncologist to see what's next. I teach High School in NJ and I need the medical. I can't live like a cripple. My principal this week and teachers had to send my home with ice packs. Didn't take anti-inflammatory meds cause it increase kidney and liver damage. The bills are unbelievable. Keep in touch

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  • GraceFrancis
    GraceFrancis Member Posts: 14
    edited May 2018

    I am Grace Francis who just joined this week. I had lumpectomy right breast, stage 1 then 30 radiation treatments. Then March 8th retina surgery, so I couldn't start Arimidex. Only made it 14 days when my joints tight, knees and legs blew up. Weight gain is up 8-10 lbs. Stopped meds and visited children in FLA. All WAS FINE AFTER 2 WEEKS OF NO MEDS. i LOOKED LIKE A CRIPPLE AT 61. Then went back to oncologist and started Letrozole. That hit me worse on day 20. Stopped it this week 4/30/18. They drs sent my to cardiologist, who feels its meds related. As precaution, getting and Echo and Stress test in a week or so. This wed May 9th back to oncologist to see what's next. I teach High School in NJ and I need the medical. I can't live like a cripple. My principal this week and teachers had to send my home with ice packs. Didn't take anti-inflammatory meds cause it increase kidney and liver damage. The bills are unbelievable. Keep in touch PS - I am an exercise freak with great nutrition. I believe my body doesn't handle this stuff well.

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  • JoyceA
    JoyceA Member Posts: 829
    edited May 2018

    Gracie Francis, I’m sorry you’re having such bad SEs. I feel very lucky. I started anastrozole before my surgery as both my surgeon and oncologist believed the ILC had spread to my other breast. The cancer hadn’t spread. I had DCIS in the other breast. I’m still surprised to hear myself say I was happy to hear I had 2 different breast cancers. But then I’m still surprised to say I have breast cancer. I started taking anastrozole a week before surgery. I feel tired, my shoulders and chest get achy but that still may be from the bmx. I’m ostopopenia so concerned about my bones. The thought getting prolia shots scares me

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  • kaywrite
    kaywrite Member Posts: 219
    edited May 2018

    Hi GraceFrancis - what a roller coaster! It's crazy how different the SEs manifest amongst those of us taking AIs. First off, I'm sorry you had to suffer them. Please keep us up to speed on what your doctors try next. I'm a couple of weeks in and only minor hot flashes thus far. We are close in age and lifestyle

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  • kaywrite
    kaywrite Member Posts: 219
    edited May 2018

    Hi JosieO, welcome!

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  • Paco
    Paco Member Posts: 208
    edited May 2018

    Just popping in to say I am on Day 13 of Tamoxifen and so far, no SEs. No hot flashes that I recognize as such and nothing that keeps me awake at night. I've been a not great sleeper of late so I can't blame the Tamox for my insomnia. I think it should be fully in my system by now.


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  • GraceFrancis
    GraceFrancis Member Posts: 14
    edited May 2018

    Hi everyone, Its GraceFrancis and I understand all the posts listed. Its great to have joined the network of sisters. I am praying for all of us and will keep you posted as I see oncologist 5/9/18. Lets see the new meds. that will be given. My gut feeling is Taxoxifen. Made it to work today. Its teacher appreciation week in NJ. At the high school level, its just hugs and joy with my juniors and seniors. My nutrition is great. Went to health food store yesterday. The girl added Collagen Peptides and Whole greens to my morning Plant based shake.Happy Mother's Day to all of you, even if you are not mothers. YOU ARE MY MOTHERS

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  • flowergal
    flowergal Member Posts: 167
    edited May 2018

    Hi all , especially the new members . I am doing OK on the anastrazole other than not losing weight but only gained a couple pounds so far and am trying to get my weight down.

    Gracie, hope you find a med. that will work with out such bad side effects! BTW, I'm originally a Jersey girl born and raised in a little town called Jamesburg. and in Memphis now for many years.

    Happy Mothers Day to you too.


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  • flowergal
    flowergal Member Posts: 167
    edited May 2018

    HiVeeder, Thanks for explaining that . Good luck with your follow ups.

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  • 98hgmom
    98hgmom Member Posts: 37
    edited May 2018

    Hi all. I’m just subscribing for now. I expect to start AIs some time this summer. I appreciate everyone who has gone through this journey before me so I can learn what to expect.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited May 2018

    Hi 98hjmom,

    Welcome. I'll be starting Tamoxifen in late June, so reading about everyone's experience that is already on hormone blockers.

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2018

    I had my pre Tamoxifen pelvic ultrasound yesterday and then picked up a 90 day supply of T. Before taking the first pill last night, I found out the ultrasound showed a thickened endometrium so now I have to see a gyn specialist and hold off on the T. I' m hoping for removal of both uterus and ovaries so I don't have that worry hanging over me for the next five years-- but first will have to find out if it is hyperplasia, polyp, or cancer! Bummer, I was just starting to feel better than I have in a year. Time to go make the gyn appointment. . .






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  • Meg101
    Meg101 Member Posts: 175
    edited May 2018

    Hi Beav - Sorry you'll be losing more 'lady bits'. It sounds like you have a good attitude about it which is half the battle. When I had my mine removed, the recovery wasn't any worse than the lumpectomy. Hopefully they won't find any bad cells. I'll keep you in my prayers.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited May 2018

    Hi Beaverntx,

    I'm sorry to hear that you now have another issue to deal with just when you were feeling good. I'm glad your doctor thought to get you check out. I hope it's thickening only not cancer, and if you have surgery, it goes smoothly. From what I read, too much estrogen can cause thickening but I don't understand why Tamoxifen can cause thickening since it decreases the estrogen. UGH. Let us know what the gyn specialist says.

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2018

    Meg and Veeder,

    Thank you for good thoughts. Now I'm back to my least favorite thing-- waiting! This time it is for the gyn' s office to call back to make the initial appointment (not that I'm antsy or anything!). Really hoping to continue to avoid chemo...



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  • metoo2018
    metoo2018 Member Posts: 64
    edited May 2018

    Good luck Beaverntx - not fair to need to worry about anything else. I am with you - take it all out if you don't need it anymore and then one less thing to worry about. No one really likes more surgery but it is relatively straight forward surgery and the peace of mind may be the worth it all. I hope you get what you need one way or the other.

    I am almost 2 months in on Letrozole - still only hot flashes, occasional balance issues (which might just me being a klutz). I feel like any time anything happens I will wonder if it is a SE or a symptom. Welcome to the new normal

    Heading off on my two week vacation and ready to put all this stuff behind me. When I get back of course there is the series of follow up appointments (3 in 3 weeks) so I won't be able to forget it for long but at least for the next 2+ weeks I will be cancer care free!

    Hugs to all of you - hoping you continue your healing and have a Happy Mothers Day!

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2018

    Metoo-- Have a wonderful vacation. So glad your timing worked out for you. Go, enjoy, and take a break from our new normal. Soon enough to pick that back up when you return.😊

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  • kaywrite
    kaywrite Member Posts: 219
    edited May 2018

    Beaver - ugh, what torture. Hope you can get an appointment and an answer soon. Waiting was indeed the hardest part for me, too. I agree with Meg: you have a great attitude about what needs to happen to be well. Now, about that appointment......

    Three weeks into Anastrozole and no SEs yet. The resident RO said it could take up to three months for SEs to show. So, hoping for status quo.

    How's everyone?


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  • Marigold8
    Marigold8 Member Posts: 46
    edited May 2018

    Hi, all,

    I saw my RO this morning. I'm healing well, as he would expect.

    And the RO always asks me how it's going on the anastrozole. I had to report that I feel like I've aged two decades: Aching and tingling in my ankles, pain in my knees, hips, shoulders, and wrists that's constant and unrelieved by analgesics and that interrupts my sleep. I can barely walk up and down the stairs in my home due to pain. Over the past 2-3 weeks, every day has been more painful than the one before, just a little, until it's finally gotten pretty bad.

    Also I'm having some problems with memory and concentration, which could be another SE.

    My MO and RO agreed: If these SEs do not clear up in the next few weeks, they want me to try letrozole instead. Also the MO wants to test my vitamin D levels, since increasing vitamin D can improve symptoms. I've been deficient in the past, so I'm glad he ordered this test.

    Praying this gets better so the next weeks are not miserable. I don't see the MO again until early June.

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  • Billb464
    Billb464 Member Posts: 62
    edited May 2018

    marigold8-sorry you are having so many different things going on. It is good that the doctors are listening and willing to try something else.

    Beaver-hoping you get your appointments quickly and good results:) I am sure that we will all second guess any health issues that might come up for us in the future and always fear the worst.

    I am in my second prescription of tamoxifen, and actually feels better than when I first started. I started the Friday after my last radiation, so it could be that I was dealing with the fallout from that along with the medication. If it takes a while to get into your system (like 3 months), then I have another month to go;).

    I have the RO visit on May 22, bone density scan on the 24th along with blood work. I chose not to do lupron shots along with the tamoxifen. Did anyone else have that option?

    We leave for Belize on May 26th, so hoping for a good time and try to relax.

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  • Jane2310
    Jane2310 Member Posts: 15
    edited May 2018

    Happy Mother’s Day to all the moms out there!

    I am posting because I just started Arimidex a month ago and the side effects are awful. I had a bilateral mastectomy in late February. I had an open wound that wasn’t healing so I now have had a wound vac for over 3 weeks. No end in sight for that because the 2 tunnels are healing very slowly.

    I have been in full blown menopause for 20 years due to a complete hysterectomy and now this Arimidex is making it SO much worse. I worked for a year to take off 22 lbs and in month I’ve gained 8 back while working even harder at watching it. (Exercise almost daily as well).

    I’m blessed to not have to do chemo or radiation so I hate to complain, but I feel like my quality of life on this medication is not worth taking it. I’m a little confused because if I have no breasts and no female organs then what are the blockers doing??? Where could a hormone induced tumor grow?

    I see my oncologist’s assistant this next week so I will see what she says about all this.

    Very frustrated!

    Jane


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  • Veeder14
    Veeder14 Member Posts: 880
    edited May 2018

    Hi Jane2310,

    I'm sorry to hear that your having such bad side effects and additionally dealing with an open wound. I have no answers as I haven't yet started hormone blocker medication however I hear your frustrations. I am interested in hearing how your Oncologists answers your questions about where a possible hormone induced tumor would grow, and why the medication was recommended. Please come back and let us know.

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  • kaywrite
    kaywrite Member Posts: 219
    edited May 2018

    Jane - a very good question! Let us know what answers you get.


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  • flowergal
    flowergal Member Posts: 167
    edited May 2018

    HI Jane

    Sorry you are having so many side effects. I am taking anastrazole and so far haven't had any side effects that were so bothersome. I am having trouble maintaining my current weight and I had been slowly losing ( on purpose) prior to the med. As I understand it, the estrogen blocker keeps any loose cancer cells from the original tumor from growing and metastasizing to other organs, not just the ovaries and uterus.I am hoping the radiation killed any of these, but since we can't know for sure, the med. will hopefully do the job .

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  • Marchz
    Marchz Member Posts: 22
    edited May 2018

    I had a wound with tunneling that developed from a seroma half way during Radiation. My wound was 7cm at its worst and required a debridement surgery before the vac.After Radiation I had a wound vac for 6 weeks and a pico vac for 2. It finally did heal. Hang in there the wound vac did it’s job. In my case it left my breast pretty bad looking but I dont care I just was glad it closed.

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  • Jane2310
    Jane2310 Member Posts: 15
    edited May 2018

    Thanks for all the info. Starting my 4th week with the vac and the one tunnel is closed and the other started around 7and is now 3.5

    Will let you know what I find out on Friday from the Oncologist.

    Jane

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  • kaywrite
    kaywrite Member Posts: 219
    edited May 2018

    flowergal - a very good answer!

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  • L8Blmr
    L8Blmr Member Posts: 133
    edited May 2018

    Jane2310, what were your hormone sensitivity scores? I'm guessing one of these--ER+? PR+? My MO has me on anastrozole because estrogen can be stored in adipose fat and rogue cancer cells will find it, hence metastatic BC somewhere else in the body. I am hoping the chemo and AI will alleviate that issue for me.

    Praying your wound heals quickly. Hang in there.

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