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Anti estrogen drugs are killing me

pamcb3
Posts: 33
Joined: Apr 2012

Hi all!
Happy holidays! I am having tough time with tolerating anti estrogen meds. I started with arimidex I only made it three months, the side effects were awful! You name it I had it....so I was given month off. I was put on fareston instead of tamoxifen. My blood didn't qualify for tamoxifen. Apparently there is a new test (actually two studies were done) one study tests the blood for a certain genetic make up. If you don't have it it won't work if you take it. The other study says it doesn't matter.) what I would like to know is who pays for those studies! So my blood didn't qualify. I took the fareston for 4months and once again I can not tolerate it. My quality of life is terrible and I can't live like this for five years. My only other choice is to take tamoxifen, knowing my blood didn't qualify.
I was recently told of a pellet that is a combination of arimidex and testosterone and is injected every three months. The testosterone is supposed to relieve all the horrible side effects and then some. Has anyone ever tried this?
I know if I take the tamoxifen it will have side effects just like all the others.....help!

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

I've never heard of the testosterone/arimidex pellet. Sounds interesting.

New Flower
Posts: 4065
Joined: Aug 2009

Sorry that you are having SE. Talk to your doctor who will give you advice and statistics on your type of cancer your age and other factors finding solutions for your situation.
Hugs

mom62
Posts: 601
Joined: Mar 2004

I take Arimidex with no side effects. I also get Lupron shots every three months. I'm not sure what the Lupron is made up of but you could look it up. I am estrogen positive and will be on these for life as I had a recurrance. I hope you find something that works for you.

Terry

SIROD's picture
SIROD
Posts: 2189
Joined: Jun 2010

AI's have some painful bone issues. I never heard of the Testosterone injections. Would you please tell us more about it.

Best,

Doris

Motors
Posts: 17
Joined: Nov 2012

I really hate taking the Tamoxifen. Having too many hot flashes almost everyday. I been on it almost 4 months now.

VickiSam's picture
VickiSam
Posts: 8333
Joined: Aug 2009

How are you doing .. Are your side efforts any better? Did you get a chance
to get in or speak with your Oncologist?

Please let us know.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Cspaniel1
Posts: 3
Joined: May 2013

Hi - I have been recently diagnosed with DCIS...very early Thank goodness.  So early in fact that I have been told the recommendation is Radiation and Tamoxifen, but neither is a definite HAVE TO.  I am really struggling between doing it all or nothing and just staying on top of mamograms eery six months.

 

Every doctor tells you to do what they specialize in, but I am unsure on my next step.

Any thoughts?  Would love some insight from those of you who have also gone through this.

Thanks so much!

Cspaniel1
Posts: 3
Joined: May 2013

Hi - I have been recently diagnosed with DCIS...very early Thank goodness.  So early in fact that I have been told the recommendation is Radiation and Tamoxifen, but neither is a definite HAVE TO.  I am really struggling between doing it all or nothing and just staying on top of mamograms eery six months.

 

Every doctor tells you to do what they specialize in, but I am unsure on my next step.

Any thoughts?  Would love some insight from those of you who have also gone through this.

Thanks so much!

burcu123
Posts: 70
Joined: Jan 2013

I was not able t to tolerate Arimidex after just 6 weeks. I told my oncologist I will rather die than take Arimidex. I was put on Tamoxifen, I did not have any blood test to see if it will work or anything. I am tolerating it very well, no side effects from Tamoxifen for me. I had a hysterectomy prior to my breast cancer diagnosis so there is no worries about possibility of uterine cancer. Tamoxifen may very slightly increase chances of uterine cancer

RozHopkins
Posts: 471
Joined: Dec 2010

Just to confuse you more.

 

Tamoxifen for 2 and a half years after surgery.  Couldn't continue.  Now on three monthly stomach pellet Zoladex/Goserelin to kill ovary function, after only one month starting Armidex if blood test results (due tomorrow) allows the go ahead.  Nearly all hot flashes, and believe me I had one after another ALL day and ALL night stopped after the implant, in fact feeling better than have in years.  But dreading Armadex just know its another Tamoxifen type treatment.  But we will see, could I be one of the lucky ones........  I am Estrogen Positive.  Oncol warned me of good old pain in legs etc after I start and must keep moving, may decrease after a while.............  Then let him take it...........  It can take a while to find what is the most suitable looks like.  Depends of age, hormones, menopause, tolerance, weight, diet.  A combination....... I started a more fibre type of regime and more water (hate water) and goodness I felt great.  

pamcb3
Posts: 33
Joined: Apr 2012

Hi all! I am doing very well! I received my first testosterone/arimidex pellet on feb first. The results were amazing. No more hot flashes, I am sleeping great, no bone or joint pain and my energy level was way up!
I just went for my second pellet a week ago. I am supposed Togo every three months. I did feel that it started to wear off sooner than the three months. The Dr. Put extra testosterone in this time .
I encourage all of you to check Dr. glasers website out. hormonebalance.org
It will link to the millennium wellness center
she has been invited to come and share this procedure with our area oncologists and othe doctors and nurses in October. I am very happy about that because this will help so many people and I won't have to travel to Ohio to get this!! Check the website!!! Very cool!

pamcb3
Posts: 33
Joined: Apr 2012

Hi all! I am doing very well! I received my first testosterone/arimidex pellet on feb first. The results were amazing. No more hot flashes, I am sleeping great, no bone or joint pain and my energy level was way up!
I just went for my second pellet a week ago. I am supposed Togo every three months. I did feel that it started to wear off sooner than the three months. The Dr. Put extra testosterone in this time .
I encourage all of you to check Dr. glasers website out. hormonebalance.org
It will link to the millennium wellness center
she has been invited to come and share this procedure with our area oncologists and othe doctors and nurses in October. I am very happy about that because this will help so many people and I won't have to travel to Ohio to get this!! Check the website!!! Very cool!

Josie21
Posts: 358
Joined: Nov 2012

So happy you are doing so well!  Maybe this will be the future of AI's..  No hot flashes, no insomnia and no joint pain sounds good to me.  

Hugs,

Ginny

Memaw60
Posts: 2
Joined: Apr 2013

Pam:

 

You have exciting news about the Tetestorone/Arimidex pellet.  I checked out the hormonebalance.org website and wrote Dr. Glasner (haven't heard back yet).   

 

Do you know if this pellet is available to the general public?  Also, do you know if it is available in the Massachusetts/New Hampshire area?

 

Maureen

Memaw60
Posts: 2
Joined: Apr 2013

Pam:

 

You have exciting news about the Tetestorone/Arimidex pellet.  I checked out the hormonebalance.org website and wrote Dr. Glasner (haven't heard back yet).   

 

Do you know if this pellet is available to the general public?  Also, do you know if it is available in the Massachusetts/New Hampshire area?

 

Maureen

pamcb3
Posts: 33
Joined: Apr 2012

Hi, I have received my third pellet. Thankfully Dr.Glaser mailed the kit here ( Massachusetts ) and my oncology surgeon put it in.
Having this pellet has helped me tolerate the arimidex. I still get some joint pain, but it usually happens toward the end of the three months when I need a new pellet. I am thinking of getting just the plain testosterone pellet to give myself a break from any pain....it seems as if my journey has been one of many extreme side effects and results that were not normal from the start.... My sister who has never had cancer gets the pellet just for menopause
Symptoms. She lives in California and was the one who told me about it.
I was also told that the testosterone pellet was used as part of breast cancer treatment in the eighties.....before they had all the "expensive" drugs they have now. I believe the drug companies probably don't like it because it is very effective for alot of people and conditions and it is very affordable. The only side effects have had from the pellet is a few extra chin hairs, that's what wax and tweezers are for!! I believe it was worth a trip to Ohio to see Dr.Glaser. The city I live in is Pittsfield Massachusetts and a brand new cancer center is opening here very soon, my oncologist has seen how much the pellet has helped me,MHD will also be the director of medicine at the new facility, so I am hoping the pellet will be available here. He has invited dr.Glaser here to present her info at the next oncology seminar they have here. Dont give up! The pellet helps with many many things, good luck!!

pamcb3
Posts: 33
Joined: Apr 2012

Hi,
I was so happy that I was able to receive my third pellet here in Pittsfield. However, after about a month I started to get hip pain, pain in my elbows and terrible knee pain. Come to find out dr.Glaser changed the amounts in the pellet she sent here. She decreased the testosterone and raised the arimidex...Wtf! The reason I was given was because I wasn't taking the arimidex orally....that was the whole point and it was in my paperwork that I wasn't so..... Somebody f##cked up. Not sure what I want to do now, I am thinking of taking a break from everything!! I know I am in there somewhere!. I don't know about anyone else but I am almost two years out of treatment and I am still dealing with side effects, I want my energy and motivation back! If anyone finds them please put them on a bus to Pittsfield mass!!

New Flower
Posts: 4065
Joined: Aug 2009

Hi Pam,

I am sorry for the side effects. Please keep in mind that energy and estrogen are connected therefore when we block estrogen we have to deal with lower energy. Make sure that you follow up with oncologist.

Regards

KathiM's picture
KathiM
Posts: 7906
Joined: Aug 2005

And Testosterone, the male hormone, will REALLY give the energy boost....in women who are hormone imbalanced, favoring the testosterone side, Estrogen is given to keep things in balance....

Estrogen, even though it has some bad stuff, also has good.....(sorry....from my OB/GYN)....maintains healthy bone density and skin elasticity, reduces risk of heart attacks in women, balances cholesterol.....

Sadly, with my 'flavor' (ER+) of breast cancer, all of my estrogen (as is yours, it sounds like...) is blocked.  So I must deal with the symptoms....including a yearly infusion of ReClast for my osteoporosis...works VERY well, and I have 'healed' from my weekly bout with siatica pain.

I take it you have tried Tamoxifen, as well?  (I know from your post that your blood didn't qualify....but wondered if that has changed....)  I have taken this for over 6 years...very minimal side effects....even though I have no uterus (removed with the rectal cancer) and so am eligible for the AI's.....

Hugs, Kathi

oliverad's picture
oliverad
Posts: 2
Joined: Sep 2013

I stop taking tamoxifen after a one year 3 days before.its terablle,driving me crazy.I will prefere not to take it any more so I hope God will help me

Cricket64
Posts: 63
Joined: Sep 2013

Some of the choices we are forced to make, just aren't fair.  I hope and pray for your healing.  When we hear of all the side effects, it makes the statistic that a large percentage of breast cancer survivors don't complete their recommond round of medications, very real.  I last 18 months on my first 'cocktail', now almost 6 months on new drug, three year to go and counting.

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