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Medical Forum / Diseases and Disorders / Breast Cancer / January 2004

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Arimidex Causes Lymphedema?

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su-texas@webtv.net - 31 Dec 2003 19:01 GMT
I was on Arimidex for maybe a year, when I got sudden acute lymphedema
in my left arm.  This was very disabling & painful.  

The arm & wrist have remained swollen for months, & (at times) swell
more.

After being on Arimidex for maybe 18 months, I was switched to Femara
for maybe a month, then Aromasin for maybe five days.  Then last week, I
stopped taking these meds.

Today when I saw the nurse practitioner, her first comment was that my
arm looked so much better & wasn't so swollen.

Since I've been off the estrogen-blockers, the swelling in my left arm
has gone down & down.  I'd thought it would remain hugely swollen
forever.  So this is a pleasant surprise.

Theories:  The Arimidex might have finally irritated & inflamed my body
to the point, where the lymph system could no longer function well, ...
which might have helped trigger/cause the lymphedema.

The best I can remember, the swelling didn't go down while I was on
Femara.   And I wasn't on Aromasin for very long, because of the severe
adverse reactions.

I was in very bad shape while taking the Arimidex, felt deathly ill &
weak, was barely able to function or care for myself, developed extreme
joint pain in new areas (which kept worsening), couldn't watch my diet
or take supplements much, had no quality of life, etc.  And I gained a
lot of weight.

While these drugs might block estrogen, I can't see how their doing this
much damage inside my body, ... can help me much with my fight against
cancer.

It seems that the irritation & inflammation, which they seemed to cause
in my body, must do some damage, esp. over time.

I'm hoping there will be some more research done, into whether these
drugs can help much or not, ... & more research into why some women
taking them, have recurrence of cancer anyway.

If the drug companies refuse to test me at all, to see why these drug
reactions were so bad, ... then that will say something about the
current quality & focus of medical/PHARMA care.  

It's been my experience so far, that drug companies & doctors will
ignore all bad results & all problems with their meds, ... until there's
a class-action-type lawsuit, many years later.

Susan, Su_Texas  my opinions
allan grossman - 31 Dec 2003 19:41 GMT
There's no data that suggest Arimidex causes lymphedema, Susan.

Coincidences happen.  Not everything is a conspiracy.
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allan

spammers can reach me at abuse@localhost
humans can reach me at wizard at pointbeing dot com

su-texas@webtv.net - 31 Dec 2003 23:36 GMT
allan wrote:

There's no data that suggest Arimidex causes lymphedema, Susan.

Coincidences happen. Not everything is a conspiracy.

==========

While there may be no published data about this, from corporate-funded
research, ... this is what happened to me.

I think the PHARMA companies & doctors should acknowledge this & check
it out now, ... rather than ignore it, deny it can ever happen, & wait
five or ten years to say:  "Well, maybe it can happen, & we're sure
gonna check on it now."  & "We had absolutely no idea this was
happening."  and "We do everything possible to protect our customers.
We value you highly, & want to keep your business."  [hypocrisy,
two-faced]

Wherever businessmen gather, they usually plot to get more rich &
powerful, in any & all ways they can.  This can be called: greed &
conspiracy.

Susan, Su_Texas  my opinions
Mary Fisher - 31 Dec 2003 21:29 GMT
> I was in very bad shape while taking the Arimidex, ....  And I gained a
> lot of weight.
>
> Susan, Su_Texas  my opinions

That's made me realise that since June, when my five years of a daily dose
of Armidex or Tamoxifen - don't know which - I've put on weight. It seems to
be more difficult to keep stable.

I'm not blaming it on coming off the meds but you never know.

There's a long fight coming up after the feasts ... :-(

Mary
janhig - 31 Dec 2003 23:18 GMT
Very interesting!  I gained 6 lbs. during treatment, mostly because I was
eating more, and was far less active.  Since active treatment ended (last
March) I have lost the extra weight, plus an aditional 6 lbs.  I feel great,
but my Dr. says that I shouldn't loose any more weight.  Right now I'm at
the ideal weight for my height.  All this weight lose occured after I
started Arimidex.  I'm 9 months into my 5 yrs of Arimidex, and really, I
feel wonderful!!  I sure don't want to gain weight when I reach my 5 year
mark and stop the Arimidex!!

> > I was in very bad shape while taking the Arimidex, ....  And I gained a
> > lot of weight.
[quoted text clipped - 10 lines]
>
> Mary
bartalo@webtv.net - 01 Jan 2004 01:38 GMT
Susan, I'm sure you just want to be helpful but your post can be very
frightening to someone like myself who may have no choice soon but to go
on the Arimidex.  I already have a fear of Lymphedema and your post had
me ready to say "no way" to the Arimidex.  However, I made myself go
back and reread the posts of others on here who state they are on or
have used the Arimidex and do not have your intense problems with it.  

I have no idea how it will affect my system but what are we to do?  No
matter what drug they try on me, I still may have bad effects but the
idea is to try to survive as you well know from your own experiences.  

Oh well...maybe we can change the title of this group to "alt. scarum.
bc".<g  

"A Happy and Healthy New Year to All! "

Bea
allan grossman - 01 Jan 2004 04:31 GMT
>I already have a fear of Lymphedema and your post had
>me ready to say "no way" to the Arimidex.  However, I made myself go
>back and reread the posts of others on here who state they are on or
>have used the Arimidex and do not have your intense problems with it.  

Hi, Bea -

Although there's no medical evidence to support Susan's claim, she's
certainly free to believe whatever she likes, I guess.

Some say lymphedema is caused by less-than-optimal surgical technique,
some say it really can't be prevented.  My wife's got a pretty good
case of it and manages to function just fine.

Bea, Arimidex is the gold standard for antiestrogen treatment in
post-menopausal women and it's generally pretty well tolerated.  Susan
says she's been through all three aromatase inhibitors and I don't
think she cared for any of them  ;)

We're starting it on Friday after taking a day's break from Tamoxifen
(the pharmacy is closed tomorrow).  If I were to offer some
unsolicited advice, I wouldn't use any one person's thoughts as gospel
here.  There are some really sharp cookies here, but none of us are
doctors and all of us have opinions  :)

Happy New Year!

(well, almost.  we've got about half an hour.)
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su-texas@webtv.net - 01 Jan 2004 16:47 GMT
Hi Bea,

Some people do Not have a severe adverse reaction to Arimidex.
Hopefully, you'll be one of them.

What I'm trying to do is raise awareness, that in some people, this drug
can be very bad, & might cause some serious health problems.  

Plus, the doctors shouldn't be forcing those patients, who are having
severe adverse reactions to a medicine, to keep taking it, ... with the
threat that if they don't, they'll get no medical care.  

The PHARMA companies should also do more testing, to see exactly why
some people have bad reactions to their medicines.  This could save a
lot of pain, suffering, time, expense & grief.

The docs need to better know what they're doing, rather than keep
forcing the same standard treatments on everyone.

I keep getting harmed by the docs' cr*p-care & determined-dumbness, by
the many failures of the medical system, ... & I don't deserve this.  

I've done everything correctly, over & over, only to have the medical
system keep failing.  For me, this has repeatedly proved a nightmare.

The medical system needs to get much better.  We need consumer groups
rating each medical treatment, each doctor, each hospital, etc.

Right now, there seem to be no quality controls, & no way to legally sue
or change the bad docs.

Susan, Su_Texas  my opinions
Alexandra Koffman - 01 Jan 2004 17:37 GMT
<> Some people do Not have a severe adverse reaction to Arimidex.
> Hopefully, you'll be one of them.
HI Sue,
Happy New Years.
The medical system is imperfect but you must realize it is not an exact
science. Most treatment plans are really an educated guess. For example I
got the flu shot....(which I get every year) but if I get the flu is it
because I was let   down by my doctor and pharmacy I think not.   Now they
are saying the flu shot may not even give much protection  should I be upset
that the medical system is out to get me?

I think you have been through a terrible experience , probably met a few
health  care providers who were less than optimal but I can't believe the
whole system has failed you 100% of the time.As a RN I can tell you that
being a frontline provider it is a hard job with 0% tolerance for errors.
Many times providers get blamed for things way out of their control - it can
be very  frustrating. I wish you the best for the New Year and give your
puppys a hug for me ! Alex
su-texas@webtv.net - 01 Jan 2004 18:16 GMT
Adverse Reactions To Arimidex

My Information:

Blood:  O positive

Countries of Origin (way back):  English, Scottish, Irish

Recently (since about mid-1850s):  East Texas, West Louisiana

Family History of Disease:  None.  Very healthy.  No allergies to flora
& fauna (not even to poison ivy).  No food allergies.

Skin:  Allergic to bandage tape.

My History:  Severe Adverse Reactions to antidepressants, blood pressure
meds, anti-inflammatory meds, muscle relaxers, pain meds, ... Arimidex,
Femara, Aromasin, etc.

I can take any antibiotics or sulfur drugs OK.

I did OK on chemotherapy & radiation.

LifeSpan:  No matter what my relatives did (such as only eat candy &
coffee, become severely overweight, get badly injured, smoked, etc.),
many (most?) lived to be in their nineties.

Cause of Death:  

Paternal grandfather died of strokes, many strokes over a period of
years, late in life.

Paternal grandmother got very sick in her twenties (malaria?), managed
to survive, but was never healthy or able to work hard again.  She
started having strokes in her seventies or eighties, or so.  She had
four children.  She had the bogus surgeries & treatments of the day,
such as surgically turning over one's uterus, to treat fatigue & fever
from the lingering malaria symptoms/problems, etc.  She survived them
OK, but they didn't help.

Father, died in his seventies of lung cancer, probably from his building
ships during the war (WW2), probably asbestos.  He wasn't sick with it
(just drippy nose), & the docs thought he could live another 15 years or
so (because the cancer was slow-growing), but he wanted to try
chemotherapy, ... which quickly sickened & killed him.  [So I was
terrified going into chemotherapy, but did OK.]

Maternal great-grandfather, died from skin cancer, late in his life.
He'd been a farmer.

Maternal great-grandmother, died in nursing home in Louisiana (probably
from neglect & starvation, I was told), when she was about 100 years
old.  Her nice daughter (Aunt Gladys-Sister) had died in her 50s or 60s
from blood disease (?), or an undiagnosed illness & the resulting
medical treatments for it, ... & that only left my grandmother (Mammy
Susie), who'd rather not help, or who was too cruel & greedy when she
did help (taking her SS check, feeding her turnip greens & cornbread
only, yelling at & threatening her).  So Mama F. was put in a nursing
home, but I wasn't told this until after she died.

Maternal grandfather, was gassed in the war, was in a hospital for a
while (with pneumonia-like symptoms & such, which kept recurring later),
& he was never very healthy again.  I don't think he lived into his
nineties, but he lived to be very old.

Maternal grandmother (Mammy Susie), took every risk imaginable, injured
many times, ill many times, always survived.  Fell/leaped out of moving
vehicle in her twenties, trying to greedily grab candy being thrown to
her children, ... was in coma in hospital for a while, ... finally woke
up & got sent home.  Got blood poisoning, & survived.  Etc.  Had four
children.  Probably because of vehicle accident, she started having
strokes in her twenties, had many strokes over the years, ... stayed up
& active (until almost ninety?), when the last stroke incapacitated her
& put her in nursing home.

==========

It will be interesting to see what tests the doctors & PHARMA companies
order, or if they order any, to see why Arimidex was so bad for me.

Since I stopped taking estrogen-blockers, the intense itching & burning,
esp. in my upper back & shoulders, is also gone.

Susan, Su_Texas  my opinions
Kaye301 - 01 Jan 2004 22:49 GMT
<< I was on Arimidex for maybe a year, when I got sudden acute lymphedema
in my left arm.  This was very disabling & painful.  

Su, you were on the Arimidex for a year before you got the lymphedema.  There
are a multitude of possible events which may have caused it.  Scar tissue to
the area which can develop gradually over time may cause it.  You could have
overused it or slept the wrong way.  You could have had a minor infection
somewhere or even a viral illness which may have caused it.  Even an increase
in cancer cells can be responsible for it.  Do you remember Mazza?  That was
how her cancer was discovered--she developed lymphedema and had never had any
surgery at all to the area.
Of course if the lymphedema cleared up on its own after discontinuing hormal
treatment and stays that way over time, then there may be some relationship
between lymphedema and the medication in your case.
Mary Fisher - 02 Jan 2004 00:20 GMT
>   Do you remember Mazza?

I can't forget Mazza. I sent a message to Steve but I'm not sure if he's
reading ...

Mary
gabnet' - 02 Jan 2004 13:37 GMT
> I was on Arimidex for maybe a year, when I got sudden acute lymphedema
> in my left arm.  This was very disabling & painful.  
[quoted text clipped - 5 lines]
> for maybe a month, then Aromasin for maybe five days.  Then last week, I
> stopped taking these meds.
Dear Susan:

Hello Susan:

When I saw your post, I thought that I should respond.   When I first
noticed lymph edema, arimidex was the farthest thing from my mind.  I
did not have a mastectomy, nor did I have any surgery at all.  One day,
it seemed to simply appear out of no where.  I have found no difference
in my arm from the get go of arimidex.  I have never felt better on
arimidex and can only pray that I will never have to go back on chemo.
I was lucky however, in that I did not get ill from any of the chemos.

As far as medication for lymphodema, you might try the lymph edema
center nearest your home, the bandaging did help, but your arm does go
back after a while.

Laura K.*

Signature

Hugs,

Laura K.*
I'm out of estrogen and I have a gun!

 
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