Uterine Fibroids - Lupron & addback

[Guest guest]

Hi Marsha (and all friends):

Many thanks for your e-mail. Actually, although I have been doing research for

almost 2 years now, I actually did not understand some of the terms you used (or

should I say " abbreviations " ) - perhaps if they were written out I would have.

Anyway, here are the answers to those questions I am able to answer:

1) The IR said that although he was sucessful in blocking the blood supply to

the fibroid through the main artery, the fibroid then took its bloody supply

from the ovarian supply.

2) MRI at 8 months indicated growth (from appx. 10.7 cm) to now appx. 11.7 cm.

3) Don't know where fibroid is located, but by looking at the MRI I think it's

in the uterus(?) I was told by my gyn that it could not be removed vaginally.

4) Don't know what adenomyosis is(?)

5) I am 49 and periods are almost regular. Sometimes 3-4 weeks, then another

cycle took almost 3 months, then 3-4 weeks again, since the January 2003 UAE.

6) The fibroid causes NO PROBLEMS regarding heavy bleeding, etc. The only

annoyance is bladder pressure/urinary frequency which causes me to get up every

1-2 hours at night. Also large abdomen but no other complications.

7) Yes, I was told that Lupron is only a temporary fix. But I was interested

in anyone's experience with either Aygestin or Vivelle as " addback " to the

Lupron.

8) I wanted to avoid any kind of surgery (myo, hyst, etc.) - that's why I tried

the UAE. I am absolutely terrified of pain and there is nothing that anyone can

do to convince me that I would be able to cope with post myo/hyst surgery pain,

even with meds. No other health reasons, no complications, etc. I'm just

trying to avoid surgery.

Thanks Marsha, and friends, for any info you can furnish. Much appreciated,

EGT (Edie)

Re: Uterine Fibroids - Lupron & " addback "

Hello EGT,

I'm so sorry to hear your UAE

wasn't successful.

If I could please ask a couple of

questions-

Did your IR describe

why the UAE was a technical failure?

Did you see your MRI results post 3 mos

and 6 months, if not MRI, then Ultrasound?

Where is your fibroid located?

Did you also have adenomyosis?

May I ask your age? Are you in your

50's and on the verge of menopause?

Were you told there would be a good

chance of regrowth of the fibroid

after the lupron treatments?

Are you not a good candidate for

other health reasons to have surgery,

ie, a myomectomy?

Take care, Marsha (age 51/UAE for

intramural fundal fibroid 2/9/99)

[Guest guest]

The recommended add back per TAP which makes it was a

nore something. I am taking lupron and megace but was

told recently that it was not an add back told in the

past it was

take calcium no matter what

if you are trying to control bleeding I'd go with

Megace not Lupron

[Guest guest]

Hi e:

Thanks for the info. Actually, I am not trying to control bleeding - it's just

that the fibroid is appx. 11.7 cm. in size and I'm trying to shrink it. Megace

controls bleeding, but Lupron is supposed to shrink, and there are a few drugs

that are used as addback to ward off flashes and bone loss caused by the Lupron.

Does anyone out there know the name of " nor..... " med that is used? Thanks!

EGT

Re: Re: Uterine Fibroids - Lupron & " addback "

The recommended add back per TAP which makes it was a

nore something. I am taking lupron and megace but was

told recently that it was not an add back told in the

past it was take calcium no matter what

if you are trying to control bleeding I'd go with

Megace not Lupron

[Guest guest]

Hi e:

Thanks for the info. Actually, I am not trying to control bleeding - it's just

that the fibroid is appx. 11.7 cm. in size and I'm trying to shrink it. Megace

controls bleeding, but Lupron is supposed to shrink, and there are a few drugs

that are used as addback to ward off flashes and bone loss caused by the Lupron.

Does anyone out there know the name of " nor..... " med that is used? Thanks!

EGT

Re: Re: Uterine Fibroids - Lupron & " addback "

The recommended add back per TAP which makes it was a

nore something. I am taking lupron and megace but was

told recently that it was not an add back told in the

past it was take calcium no matter what

if you are trying to control bleeding I'd go with

Megace not Lupron

[Guest guest]

Edie,

Try the Center for Uterine Fibroids

http://www.fibroids.net/html/medical.htm

The above link discusses GnRH and add-back

therapy (including norethindrone)

You may want to consider e-mailing

or contacting the Center (go to Home Page

at bottom of the link) with your question

to see how many other women your age

have managed to shrink/slow

the growth of an 11 cm intramural fibroid

and successfully merge into normal menopause,

and without surgery, using Lupron. Did you

Dr. give you a good prognosis--that it was

possible? How long did s/he anticipate you

would have to be on the Lupron?

Marsha

Actually, I am not trying to control bleeding - it's just that the

fibroid is appx. 11.7 cm. in size and I'm trying to shrink it.

Megace controls bleeding, but Lupron is supposed to shrink, and there

are a few drugs that are used as addback to ward off flashes and bone

loss caused by the Lupron. Does anyone out there know the name

of " nor..... " med that is used?

[Guest guest]

Hi Marsha:

Thanks for the link and info. Good question re. my doctor and a prognosis:

actually, although I love my doctor for annual exams, unfortunately I am located

in a very rural area and the doctors here are better at routine deliveries and

" regular women's problems " (they probably work better with cows and horses)! -

not a single " specialist " in the area. So, to answer the question: rotten

prognosis - cut, cut, cut! Let's do a hysterectomy AND remove the ovaries -

" you don't need them after all, at your age! (49) " DUH! " Or, we can TRY you on

the Lupron for up to 6 months, and we can start you right away on the Vivelle

patch (estrogen, which according to my research makes the darned thing GROW

AGAIN!) - You're supposed to keep away from estrogen, so why is she prescribing

estrogen as an " addback? " (doesn't make sense to me)! Also, unfortunately, my

insurance coverage is local as well, so I may eventually have to seek an

out-of-pocket specialist for another opinion. I am going tomorrow to a

different, though local, gyn who I am hoping may have a bit more experience with

fibroids, since I found her name at this site: www.afriendindeed.org (under

" menopause clinics " ). So, I'll let everyone know IF this doctor has a different

opinion/alternate suggestion, but based on my experience living where I do, I'm

not optimistic. Sorry for the dismal attitude but I guess you've all been

through it, one way or another! Let's see tomorrow........Have a good evening!

Thanks again, Edie

Re: Uterine Fibroids - Lupron & " addback "

Edie,

Try the Center for Uterine Fibroids

http://www.fibroids.net/html/medical.htm

The above link discusses GnRH and add-back

therapy (including norethindrone)

You may want to consider e-mailing

or contacting the Center (go to Home Page

at bottom of the link) with your question

to see how many other women your age

have managed to shrink/slow

the growth of an 11 cm intramural fibroid

and successfully merge into normal menopause,

and without surgery, using Lupron. Did you

Dr. give you a good prognosis--that it was

possible? How long did s/he anticipate you

would have to be on the Lupron?

Marsha

[Guest guest]

Edie,

Do you have a copy of the following books?

They both have excellent discussions

on Lupron and in the context of fibroids:

As you know, our Moderator, Carla Dionne,

is also Executive Director of the National

Uterine Fibroids Foundation (NUFF.org) and

author of " Sex, Lies & the Truth About Uterine Fibroids " -

A Journey from Diagnosis to Treatment to

Renewed Good Health " Publisher: Avery/Member

of Penguin Putnam 2001,

Chapter 3 The Choices

" A Few Words about Drugs, Devices,

and the FDA " page 31

Quote:

" Lupron has NOT been approved

for " shrinking fibroids "

The Authors of the book below, Dr.s

Goodwin & Broder are innovative

courageous and inspiring Doctors who

helped found NUFF.

" What Your Doctor May Not Tell You About

Fibroids-New Techniques and Therapies--

Including Breakthrough Alternatives to Hysterectomy "

C. Goodwin, MD & Broder, MD

Publisher: Warner Books, 2003

p. 154

GnRH agonists are also sometimes tried

as a " holding action " to keep fibroids under

control until menopause. This strategy

only makes sense if you and your doctor

believe you will be entering menopause

within the next 6 months or so since

fibroids quickly regrow after the drugs

are stopped "

If you do elect to attempt the Lupron,

Edie, I agree, I'd have a menopause

specialist that has a successful track

record with pre-menopausal women on the

verge of menopause.

A drug like RU486 that shrinks and holds

uterine fibroids without significant side-effects/long-term

complications. ....boy we could use that

in our list of medical therapies. So

many women could benefit....so so many

invasive fibroid medical procedures might be

rendered, unnecessary.

Just wish the UAE had worked for you.

Marsha

So, to answer the question: rotten prognosis - cut, cut, cut! Let's

do a hysterectomy AND remove the ovaries - " you don't need them after

all, at your age! (49) " DUH! " Or, we can TRY you on the Lupron for

up to 6 months, and we can start you right away on the Vivelle patch

(estrogen, which according to my research makes the darned thing GROW

AGAIN!) - You're supposed to keep away from estrogen, so why is she

prescribing estrogen as an " addback? " (doesn't make sense to me)!

Also, unfortunately, my insurance coverage is local as well, so I may

eventually have to seek an out-of-pocket specialist for another

opinion. I am going tomorrow to a different, though local, gyn who I

am hoping may have a bit more experience with fibroids, since I found

her name at this site: www.afriendindeed.org (under " menopause

clinics " ). So, I'll let everyone know IF this doctor has a different

opinion/alternate suggestion, but based on my experience living where

I do, I'm not optimistic. Sorry for the dismal attitude but I guess

you've all been through it, one way or another! Let's see

tomorrow........Have a good evening! Thanks again, Edie

>

> Re: Uterine Fibroids - Lupron

& " addback "

> Try the Center for Uterine Fibroids

> http://www.fibroids.net/html/medical.htm

> The above link discusses GnRH and add-back

> therapy (including norethindrone)

> You may want to consider e-mailing

> or contacting the Center (go to Home Page

> at bottom of the link) with your question

> to see how many other women your age

> have managed to shrink/slow

> the growth of an 11 cm intramural fibroid

> and successfully merge into normal menopause,

> and without surgery, using Lupron.

[Guest guest]

Oh, good Edie--

Sounds like you have a gyne you

can work with and looking out

for your best interests.

Marsha

Anyway, I had an appt. today for a second opinion with a gynecologist

whom I located on www.afriendindeed.com and really liked her a lot.

She has more knowledge than my (younger) regular gyno and agreed that

it would be OK for me to wait 3 more months, then go for another

pelvic ultrasound and see if the 11.7cm fibroid gets any larger. She

has ordered (menopausal) bloodwork such as estradiol, LH, FSH(?)

etc. So, we'll see how far I am. At that point, I made a commitment

to myself to TRY the Lupron with addback for 3 months. I figure, the

longer I can stall (providing it doesn't grow further), the closer I

may get towards menopause. Then I would stand a better chance with

the Lupron.