HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 08-25-2005, 06:56 PM   #1
Rozebud
Senior Member
 
Rozebud's Avatar
 
Join Date: Nov 2004
Location: Olathe, KS
Posts: 107
I have been bugging my onc. to switch me to AIs for MONTHS (have been on tamoxifen for a year and zoladex shots to shut down ovaries for 9 months). She kept saying no, even through no periods and hot flashes since December she wasn't sure I was menopausal.

Flash forward to last week. I asked for an FSH/LH test to send to Patty at UofW so I could work on getting into the vaccine trial. My levels came back at 2.2! I need to be over 20 to be menopausal. I'm not even close! Which scares me since the hot flashes are so nasty!

So I guess she was right. Ladies - watch out. These shots may stop periods but not necessarily put you into menopause. If you take an AI as a premenopausal woman, it could be dangerous. If you really want to be sure, yank the ovaries.

Guess that's the next thing I'm looking at :( .
Rozebud is offline   Reply With Quote
Old 08-25-2005, 10:32 PM   #2
*_Linda_*
Guest
 
Posts: n/a
hmmm..... sounds alot like my situation. Thanks for sharing. It gave me something to think about. I'll ask my onc to check my hormone levels next week when I see her. I had them done 6 months ago. I'd be curious to see if they've changed. I haven't had a period in over a year eventho I'm still producing estrogen.

cheers, Linda
  Reply With Quote
Old 08-26-2005, 07:38 AM   #3
Becky
Guest
 
Posts: n/a
I am having my ovaries removed this coming Monday and then going back on Arimidex (I was off for 3 weeks because I had my period again about 3 weeks ago - go figure because the docs can't figure it out and it was a menstrual period - just like old times in length and how it ran. My youngest daugher (14 yrs old) said that I look so young that my inside was following my outside. Haha - it was one of the nicest things for her to say but....).

I had my LH/FSH run monthly and they were 28/55 respectively - clearly postmenopausal but...

On Monday, I will be menopausal and I will let you know if I start flashin' again.

Warm regards

Becky
  Reply With Quote
Old 08-26-2005, 10:49 PM   #4
sassy
Guest
 
Posts: n/a
Becky,
Do you know of any down side to having ovaries out? I am considering this if I do not test postmeno--just finished my 12 taxol/herceptin TODAY:).

Side effects, possible problems? Do Lupron shots take forever? I do not want to go on tamoxifin--want to go straight to AI.

Thanks for any help?

Sassy
  Reply With Quote
Old 08-27-2005, 07:33 AM   #5
Rozebud
Senior Member
 
Rozebud's Avatar
 
Join Date: Nov 2004
Location: Olathe, KS
Posts: 107
I'm jumping in, but there are lot of things to consider - osteo, heart disease and maybe even increased risk of Parkinson's?
I'm attaching an excerpt from an article I read back in May. The link doesn't work any more, but her is the article. Not sure if these same things apply with suppression or not. This is part of the reason I'm still wavering.

From the article:
Oophorectomy, or the removal of the ovaries, is done for a number of reasons. It pushes the body into early menopause by stopping the production of estrogen. Studies have shown that breast and ovarian cancer risk falls by about 50 percent when the ovaries are removed, a significant consideration for those with a family history of these diseases. But the risk of osteoporosis and heart disease rises after ovary removal.

And estrogen's role in brain health also may have to figure into the surgical equation, Rocca said. Robbing the brain of estrogen can "hasten brain aging," he added.

In the Mayo Clinic study, Rocca and colleagues identified 2,500 women who had one or both of their ovaries removed and compared their rates of Parkinson's to women with ovaries.

This latest study suggests that pre-menopausal women who had both ovaries removed had twice the rate of Parkinson's than those who had both their ovaries intact. And women who had the procedure done earlier rather than later in midlife also had a greater risk of developing Parkinson's.


------------------------------

Here is a link to the study from another site. Got it by googling ovary removal and parkinsons:

http://howardregional.org/healthnews/healt...414HD525136.htm
Rozebud is offline   Reply With Quote
Old 08-27-2005, 11:45 AM   #6
SusanAnne
Guest
 
Posts: n/a
Hi Rozebud,

Thanks for the info. I wasn't aware of the Parkinson's link to ovary removal. I already have osteoporosis and have been on Fosamax for 1 1/2 yrs (just switched to the once a month Boniva).

While on Tamoxifen my FSH levels showed I was in menopause but after switching to Arimidex my periods came back (FSH levels still showed menopause). So instead of taking Lupron shots I went the route of ovary removal a few months ago. It's been surprising to me how long it's taking for my body to adjust to this change. At first, insomnia set in, then hormonal migraines and this week it's a yeast infection. If I can blame my new diagnosis of lymphedema on it I would! I do feel things evening out now though. It's funny how sometimes you just have to go with what your gut tells you and I was sure this is what I needed to do and I'm still glad I went thru with it.

Good luck with your decision.

Susan
  Reply With Quote
Old 08-27-2005, 08:57 PM   #7
Gina
Guest
 
Posts: n/a
Hi, folks,

Rozbud, I really appreciated your comments. I was especially interested to learn of the Parkinson's connection which I had not heard about before. Of course the decision has to be personal for every one, but unless there is some pressing KNOWN danger, I come out on the side NOT to take the ovaries out IF AND ONLY IF you know for certain you have her-2 and are permited regular access to Herceptin. If you are HER-2 negative and KNOW for CERTAIN that you have serious estrogen driven tendencies...you might consider it, but for HER-2 folks, even ER positive one... I wouldn't.

What I would do instead, is be sure my weight was in a normal range (as fat cells produce estrogen) and take Herceptin on some sort of regular basis and monitor my CA 27/29 tumor markers with the serial Serum Her-2 markers and be scanned regularly. If a problem does crop up that extra herceptin can't regress, and seems to be estrogen -related, then, by all means re-visit the ovary removal, if you must, but postpone it as long as possible. It is just that so many effects of the estrogen are good for our hearts, bones, teeth, not to mention BRAIN FUNCTION and natural good LOOKS hee hee hee. Also, as deep sound sleep is so vital to rebuild oneself repeatedly after the Herceptin immuno response each time, I really worry about doing anything that could potentially disrupt the sleep / wake cycle. But again, it is a very personal choice. This is only my opinion and remember folks, most of my data and research comes from the study of ER-PR- HER-2 +++. Becky, please see the e-mails I sent you last night and earlier today for more detailed information in this regard. FYI, GINA
  Reply With Quote
Old 08-27-2005, 09:39 PM   #8
sassy
Guest
 
Posts: n/a
Gina,

Would lupron shots to put you into menopause be a viable option. Or would the effect be the same as removal of ovaries as far as the risk of Parkinsons.

I guess my question is, would i benefit by taking lupron shots and going to AI as soon as possible?

Sassy
  Reply With Quote
Old 08-30-2005, 11:04 AM   #9
kk1
Guest
 
Posts: n/a
rosebud;


Do not panick the Zoladex is working for you. FSH is what stimulates your ovaries to produce estrogen. Zoladex works by keeping the levels of FSH and LH very low so that your ovaries do not get a signal to produce estrogen.

In natural menopause your ovaries fail so the pituitary tries to make lots of FSH to try and convince the ovaries to owrk harder. THis is why in natural menopause you have high FSH and low estradial.

In contrast for premenopausal women on Zoladex (or Lupron) you should have low FSH/LH and low estradial if the Zoladex is doing it's job.

Also note that Zoladex causes the uterous to thin dramatically so you may occcasionally have bleeding but it is not as a result of estrogen. If your worried have you estodial levels measured that is what will tell you what is really going on.


kk1
  Reply With Quote
Old 08-31-2005, 09:45 AM   #10
petesmom
Guest
 
Posts: n/a
I am having my ovaries removed in October so that I can switch from Tamoxifen to Arimidex. I am 52 with a very low FSH and even though my onc thinks the Tamoxifen will do the job, I want to be more agressive to get on with the menopause. I am HER+++ and I think evidence is mounting that Tamoxifen may not be as good as one of the AI's for those of us in the HER2+++, ER/PR+ subgroup.
Anyway, I feel good about my decision to get the ovaries removed.

Petesmom
  Reply With Quote
Old 08-31-2005, 09:45 PM   #11
Rozebud
Senior Member
 
Rozebud's Avatar
 
Join Date: Nov 2004
Location: Olathe, KS
Posts: 107
kk1 - Thank you SO much for that information. Why on EARTH would my onc. have tested for menopause that way then?? Should I ask for the estridol test? Would that tell me?

When I asked my onc. the message I received back was "it's working as well as it can" but she is still encouraging me to yank the ovaries. I'm wondering if she really know what she's talking about???
Rozebud is offline   Reply With Quote
Old 09-01-2005, 06:37 AM   #12
kk1
Guest
 
Posts: n/a
Rosebud;

For peace of mind I have my serum levels of estradial measured (will be <20 if in menopause) along with the FSH which if you are on Zoladex should be at the same low level typicial seen in follicular phase. It is odd that your onc is not measuring your estradial level...maybe he/she does not know how the zoladex works and just assumed you would have high FSH as in natural menopause. I pasted a link below with more details on how zoladex works. Maybe you should print it for your onc.

All the studies I have read show that chemical menopause is as good as having your ovaries out, so it is just a personal decision which way to go. For me I'd rather have a shot any day rather than have surgery.

While the definitive studies are still out it sure is looking likely that Tamoxifen upregulates her2 so I would not want to be on tamox without concurrent herceptin. I would keep pushing to get an AI.


kk1

http://www.tiscali.co.uk/lifestyle/healthf.../100002862.html
Zoladex
How does it work?

Goserelin acetate is a type of medicine known as a gonadorelin (LHRH) analogue. It acts on the pituitary gland in the brain. The pituitary gland produces and stores various hormones, including the sex hormones, luteinising hormone (LH) and follicle-stimulating hormone (FSH). In the male, LH released from the pituitary gland causes the testes to produce testosterone. FSH and testosterone cause the production of sperm by the testes. In the female, FSH and LH cause the production of oestrogen by the ovaries and help control the menstrual cycle. The amount of LH and FSH released from the pituitary gland is controlled by another hormone, called gonaderelin (LHRH), which acts on LHRH receptors in the pituitary gland. Goserelin acetate is a synthetic form of gonaderelin. It acts on the LHRH receptors in the pituitary gland, in the same way as natural gonadorelin. Initially, goserelin causes an increase in the amount of FSH and LH released from the pituitary gland. However, chronic administration of goserelin desensitises the pituitary gland. This means that it produces less and less FSH and LH, which in turn stops the production of oestrogens in the female and androgens in the male. This reduction in the levels of sex hormone can be exploited to treat disorders that are linked to levels of oestrogen or testosterone. The growth of some breast cancers is stimulated by oestrogen, and that of some prostate cancers by testosterone. Because these cancers are sensitive to the sex hormones, goserelin can be used in their treatment. Reducing the body's levels of these hormones causes the tumours to shrink. This treatment does not provide a cure, but rather improves quality of life and increases life expectancy. Similarly, goserelin is used to treat endometriosis in women, a condition where tissue resembling the womb or uterus lining (endometrium) is found in other sites in the body. The growth of this tissue is stimulated by oestrogen, so decreasing oestrogen levels will stop the growth. Administration of goserelin in women results in decreased oestrogen levels. This thins the lining of the womb (endometrium) and most women's periods will stop during treatment. This effect is used to thin the endometrium prior to endometrial surgery, and also to treat women with fibroids who have become anaemic. Goserelin is also used to desensitise the pituitary gland and stop the natural production of FSH and LH, in women with infertility caused by ovulation problems. Synthetic FSH and LH are then administered to stimulate ovulation.
  Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 04:10 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2026, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter