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tamoxifen side effect?

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molly53

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Oct 22, 2006, 8:15:16 PM10/22/06
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Hello everyone. I am new to this group having been diagnosed with bc
in 2003. I have been on tamoxifen 3 years now and experiencing
numbness, tingling and all sorts of strange twitchy feelings in my
legs, sort of like what I imagine diabetic neuropathy feels like. My dr
thinks its from the tamoxifen, but it doesn't seem to be a very common
side effect. Has anyone else experienced this? And what the heck do you
do about it?

Roman Bystrianyk

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Oct 24, 2006, 12:47:47 PM10/24/06
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FYI

Veronesi U, Maisonneuve P, Costa A, Sacchini V, Maltoni C, Robertson C,
Rotmensz N, and Boyle P., "Prevention of breast cancer with tamoxifen:
preliminary findings from the Italian randomised trial among
hysterectomised women. Italian Tamoxifen Prevention Study", The Lancet,
July 11, 1998, Vol. 352, Num. 0, pp. 93-97

"Background: Tamoxifen is a candidate chemopreventive agent in breast
cancer, although the drug may be associated with the development of
endometrial cancer. Therefore we did a trial in hysterectomised women
of tamoxifen as a chemopreventive."

"Methods: In October, 1992, we started a double-blind
placebo-controlled, randomised trial of tamoxifen in women (mainly in
Italy) who did not have breast cancer and who had had a hysterectomy.
Women were randomised to receive tamoxifen 20 mg per day or placebo,
both orally for 5 years. The original plan was to follow the
intervention phase by 5 years' follow-up. In June, 1997, the trialists
and the data-monitoring committee decided to end recruitment primarily
because of the number of women dropping out of the study. Recruitment
ended on July 11, 1997, and the study will continue as planned. The
primary endpoints are the occurrence of and deaths from breast cancer.
This preliminary interim analysis is based on intention-to-treat."

"Findings: 5408 women were randomised; participating women have a
median follow-up of 46 months for major endpoints. 41 cases of breast
cancer occurred so far; there have been no deaths from breast cancer.
There is no difference in breast-cancer frequency between the placebo
(22 cases) and tamoxifen (19) arms. There is a statistically
significant reduction of breast cancer among women receiving tamoxifen
who also used hormone-replacement therapy during the trial: among 390
women on such therapy and allocated to placebo, we found eight cases of
breast cancer compared with one case among 362 women allocated to
tamoxifen. Compared with the placebo group, there was a significantly
increased risk of vascular events and hypertriglyceridaemia among women
on tamoxifen."

"Interpretation: Although this preliminary analysis has low power, in
this cohort of women at low-to-normal risk of breast cancer, the
postulated protective effects of tamoxifen are not yet apparent. Women
using hormone-replacement therapy appear to have benefited from use of
tamoxifen. There were no deaths from breast cancer recorded in women in
the study. It is essential to continue follow-up to quantify the
long-term risks and benefits of tamoxifen therapy"

"However, side-effects of Tamoxifen include an increased occurrence
of endometrial cancer."

"In June, 1997, the trialists and the data-monitoring committee
decided to end recruitment because of the number of women dropping out
of the study and the side-effect profile of tamoxifen."

"The decision to recruit only hysterctomised women was based on the
consideration that tamoxifen could produce an additional risk of
endometrial cancer."

"56 women experienced 64 events of thrombophlebitis,
phelbothrombosis, or embolus (or a combination) during the course of
this study: 18 women on placebo and 38 on tamoxifen (p=0..0053). 42
events were superficial phlebitis, with nine women having a diagnosis
of deep-vein thrombosis, six on tamoxifen and three on placebo."

"There were 14 documented cerebrovascular ischaemic events: five on
placebo and nine on tamoxifen (p=0.27). All five confirmed strokes
occurred in the tamoxifen arm. Based on the incidence of stroke in
Italy, it was estimated that the number of strokes seen in this study
was less than to be expected in a group of women this age. (After the
"freezing" of the data set, there was a further stroke and one
transient ischaemic attack, both in women on placebo)."

"Hypertriglyceridaemia was not looked for specifically at each
follow-up visit, and the study relies on self-reports from patients and
physicians and subsequent confirmation from laboratory findings. 17
women in the study had hypertriglyceridaemia: two on placebo and 15 on
tamoxifen (p=0.0013). This information almost certainly underestimates
the occurrence of hypertriglyceridaemia in women in the study."

"The principal investigators were concerned about the large numbers
of women withdrawing from the study, the unexpected finding with
hypertriglyceridaemia, the findings about vascular events, and the
number of well women complaining about the side-effects of
tamoxifen."

"The excess of hypertriglyceridaemia seen in women receiving
tamoxifen in our study appears to be occurring among women in whom a
diagnosis of hypertriglyceridaemia has not previously been made.
Although this is still a rare event, and it may be being underestimated
by the lack of direct focused question and examination in the follow-up
visits, the relative risk is large."

"The NSABP-14 trial showed a significant advantage to women who
received tamoxifen for 5 years in the adjuvant setting. Women on
tamoxifen were then radomised to either further 5 years of tamoxifen or
placebo. Through 4 years after the reassignment of tamoxifen-treated
patients to continued therapy or placebo, advantages in disease-free
survival (92 vs 86%, p=0.003) and distant-disease-free survival (96 vs
90%, p=0.01) were found for those who discontinued tamoxifen. Survival
was 96% for those who discontinued the drug compared with 94% for those
who continued the drug (p=0.08). These data could be interpreted as
being compatible with the hypothesis that long-term tamoxifen therapy
is associated with a more aggressive form of breast-cancer recurrence.
It is essential to monitor the mortality rate from breast cancer among
women receiving tamoxifen prophylactically. Otherwise there is a risk
that well women may be prescribed tamoxifen when experience of
long-term effects is lacking in such a population."

"In conclusion, tamoxifen was not significantly protective against
breast cancer in women at normal or slightly reduced risk of the
disease, at least in the duration of our follow-up. Women using
hormone-replacement therapy benefited from tamoxifen administration:
these preliminary findings require further investigation of the impact
of antioestrogens on users of such therapy. Whether the action is
limited to women receiving hormone-replacement therapy transdermally or
is present also in women using oral treatment should also be
investigated. It is notable that no deaths from breast cancer have yet
been observed in the entire cohort and a much longer follow-up will be
needed to quantify the impact of tamoxifen use on breast-cancer
mortality and other long-term risks and benefits of tamoxifen
therapy."

A.P. Thorsen

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Oct 24, 2006, 1:25:05 PM10/24/06
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"molly53" <mollyh...@yahoo.com> wrote in message
news:1161562516....@m7g2000cwm.googlegroups.com...

I didn't have anything like that in my 2.5 years on Tam (or my subsequent 3+
years on Arimidex).

Do you mean legs, or mainly feet? Most people I know with neuropathy (from
chemo, not Tam) have it mainly in the extremities. Has your family doc
ruled out other things, non-cancer-related, like Restless Legs Syndrome?

Hope you're able to find a solution!

Ann T.
Remove 'dontsendspam' from address to reply by email


Mary Fisher

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Oct 24, 2006, 3:30:54 PM10/24/06
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"A.P. Thorsen" <annthorsend...@yahoo.com> wrote in message
news:ehli9h$ga9$1...@news.msu.edu...

>
> "molly53" <mollyh...@yahoo.com> wrote in message
> news:1161562516....@m7g2000cwm.googlegroups.com...
>> Hello everyone. I am new to this group having been diagnosed with bc
>> in 2003. I have been on tamoxifen 3 years now and experiencing
>> numbness, tingling and all sorts of strange twitchy feelings in my
>> legs, sort of like what I imagine diabetic neuropathy feels like. My dr
>> thinks its from the tamoxifen, but it doesn't seem to be a very common
>> side effect. Has anyone else experienced this? And what the heck do you
>> do about it?
>
> I didn't have anything like that in my 2.5 years on Tam (or my subsequent
> 3+ years on Arimidex).

After a couple of years on whatever it was (research so don't know) I had a
tiny (less than one square inch) of numbness on the side of one leg. It's
gradually spread to include my foot, I sometimes get pins and needles too.
This is after another six years. It's also associated with sciatica which
I'm managing with amytriptilene .

I think my experience was much more to do with that than whatever I was
taking for the research program.

Having bc treatment or taking medications for it doesn't prevent one
contracting other conditions. You wouldn't think that if you caught a cold
it would be because of tamoxifen, would you?

Mary

Mary


Tim Jackson

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Oct 24, 2006, 3:39:35 PM10/24/06
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Mary Fisher wrote:
>
>
> After a couple of years on whatever it was (research so don't know) I had a
> tiny (less than one square inch) of numbness on the side of one leg. It's
> gradually spread to include my foot, I sometimes get pins and needles too.
> This is after another six years. It's also associated with sciatica which
> I'm managing with amytriptilene .
>
Hey, I've got a small numb patch on my leg too, on the side of my knee.
These things happen I guess. Mine is close to the site of an old
injury, but it didn't get numb till some 30 years later. I can't blame
any drugs though. I also occasionally get what feels like an inflamed
tendon in the same area.

So my first guess is that these are nothing to do with treatment.

Tim

Mary Fisher

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Oct 24, 2006, 3:58:37 PM10/24/06
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"Tim Jackson" <t...@tim-jackson.co.uk> wrote in message
news:453e6bf2$0$8727$ed26...@ptn-nntp-reader02.plus.net...

>
>>
> Hey, I've got a small numb patch on my leg too, on the side of my knee.
> These things happen I guess. Mine is close to the site of an old injury,
> but it didn't get numb till some 30 years later. I can't blame any drugs
> though. I also occasionally get what feels like an inflamed tendon in the
> same area.
>
> So my first guess is that these are nothing to do with treatment.

More to do with advancing years I suspect :-(

But not in your case of course :-)

Mary

>
> Tim


allan

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Oct 25, 2006, 6:59:11 AM10/25/06
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Tim Jackson wrote:
> Hey, I've got a small numb patch on my leg too, on the side of my knee.

Me too, but in my case it's maybe 5 inches long and an inch and a half
wise and runs down the outside of my left thigh. It doesn't hurt, just
pins and needles but even sustained light pressure makes me pretty
squirmy after about a minute.

The condition is called meralgia paresthetica and is caused by
compression of the lateral femoral cutaneous nerve. In my case it's
caused by being overweight and losing a few pounds does improve the
condition considerably. Restrictive clothing and weight gain are the
two primary causes.

Mary Fisher

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Oct 25, 2006, 7:21:13 AM10/25/06
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"allan" <wizar...@gmail.com> wrote in message
news:1161773951.1...@i42g2000cwa.googlegroups.com...

> Tim Jackson wrote:
>> Hey, I've got a small numb patch on my leg too, on the side of my knee.
>
> Me too, but in my case it's maybe 5 inches long and an inch and a half
> wise and runs down the outside of my left thigh. It doesn't hurt, just
> pins and needles but even sustained light pressure makes me pretty
> squirmy after about a minute.
>
> The condition is called meralgia paresthetica and is caused by
> compression of the lateral femoral cutaneous nerve.

ALLAN! Go and wash out your mouth !!!!!!!!!


:-)

Mary


allan

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Oct 25, 2006, 10:35:31 AM10/25/06
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Mary Fisher wrote:
> ALLAN! Go and wash out your mouth !!!!!!!!!

*looks down*

*shuffles feet*

Yes, ma'am.

Mary Fisher

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Oct 25, 2006, 2:54:33 PM10/25/06
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"allan" <wizar...@gmail.com> wrote in message
news:1161786931....@h48g2000cwc.googlegroups.com...

Hrumph. I should think so.

You're a good boy really, come and have a hug.

And another for Deb :-)

Mary
>


John Richards

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Oct 25, 2006, 7:17:26 PM10/25/06
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"allan" <wizar...@gmail.com> wrote in message news:1161773951.1...@i42g2000cwa.googlegroups.com...

About seven months ago I developed numbness (but no pins & needles)
on the underside of all 10 of my toes. My doctor can't find a reason for it.
Bottom line is that numbness can be caused by many different issues.

--
John Richards

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