[Wellness] Re: Wellness Digest, Vol 13, Issue 1

["Karen Patterson" <Patterson@womens-wellness.com>]

Nancy and Linda,
Thanks so much for your concern.  I am doing very well.  You may have seen
my postings about a medication problem I had over the holidays.  It is all
straightened out now.  It was very scary for awhile, and the fact that my
Neurologist knew nothing about the side effects (extreme anxiety resulting
in suicides and attempted suicides--per class action suits and FDA
investigations) was even more scary. I am on a new medication now recently
approved for my specific condition, nerve damage due to high dose radiation
treatment, multiple surgeries and standard radiation.  It seems to be
working well except I am not sleeping much at all.  If I do sleep I wake up
every hour almost on the hour.  I am supposed to double the dosage in a week
but I am not sure I'll be ready then.  The side effects are supposed to be
sleepiness but as usual I am different and go to bed wired.  I am trying to
work it out and will talk to the pharmacist next week before I refill the
prescription.

As far as chemo brain, 4.5 years out from my last chemo treatment I think I
am doing much better.  The research says it takes about a year for a one
time regimen of chemo.  I had three regimens and high dose chemo for a stem
cell transplant so of course mine will take longer.  The great thing is that
doctors are starting to put credence to patients complaints and recognize
that chemo brain is a real side effect not just a figment of the patient's
imagination.  If some doctors do not we need to educate them.  I always walk
in with all my research as I did with this Neurologist.  I don't think he is
going to change his mind and he says no other patients have had problems.  I
do not know how many of them were on it for five years but not every doctor
can be educated.  That is why I spend so much time educating and empowering
my members. If your doctor won't listen to you then get a new doctor.

I am very proud of the time you are taking to educate yourselves.  We are
all individuals with different responses to treatments and medications and
until EVERY doctor realizes that we will still be fighting this battle.  I
am making a difference one doctor at a time.  As a matter of fact I am now
looking for a new general practioner since the new one I went to has no
regard for patient input or taking time to research treatments.  Oh well, I
will find the right one yet.  Keep up the spirit and the battle.  Let
everyone know what you have learned.  That is what this forum is for.

My very best for good health and total wellness,
Karen Patterson, Founder of Womens-Wellness.com and a breast cancer survivor

-----Original Message-----
From: wellness-bounces@womens-wellness.com
[mailto:wellness-bounces@womens-wellness.com]On Behalf Of Nancy Carver
Sent: Tuesday, January 24, 2006 11:46 AM
To: wellness@womens-wellness.com
Subject: [Wellness] Re: Wellness Digest, Vol 13, Issue 1


Hello to all !
I agree with Linda.  Karen we need to hear how you are doing !  You were a
great source for me and I would like to maintain the connection.  Linda,
thanks for the vote af confidence again !  It is definitely not all in our
heads - well, it is - thanks to the chemo.  Stay strong and focused!  All
the best and lots of prayers, Nancy
----- Original Message -----
From: <wellness-request@womens-wellness.com>
To: <wellness@womens-wellness.com>
Sent: Monday, January 09, 2006 8:22 AM
Subject: Wellness Digest, Vol 13, Issue 1


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> Today's Topics:
>
>   1. Cognitive Dysfunction aka. Chemo Brain (Linda Anne Bartlett)
>   2. Synthroid vs. alternatives (Mott Sarah E)
>   3. Re: Synthroid vs. alternatives (Beverly D.)
>   4. Your Prescription Drugs BEWARE (Karen Patterson)
>
>
> ----------------------------------------------------------------------
>
> Message: 1
> Date: Mon, 2 Jan 2006 04:07:34 -0800 (PST)
> From: Linda Anne Bartlett <twincol.we@sbcglobal.net>
> Subject: [Wellness] Cognitive Dysfunction aka. Chemo Brain
> To: wellness@womens-wellness.com
> Message-ID: <20060102120734.9179.qmail@web81304.mail.mud.yahoo.com>
> Content-Type: text/plain; charset="iso-8859-1"
>
> Hello, Karen!
>
>  New lister here . . . Linda.  It seems you're pretty much out here by
> yourself these days.  That's very sad.  Perhaps, tho, that means that
> there are more local resources such as support groups for breast cancer
> patients in communities than earlier.
>
>  I found you as I searched around looking into "chemo brain."  I'm about
> 18 months post-chemo and continue to suffer cognitive deficits and fatigue
> fallout from my chemo.  In fact, I was handed a formal written reprimand
> last week due to these deficits.  I'm headed to my neurologist for a
> recommendation that my productivity expectations be reduced temporarily
> while I work with medications to work some of it out.  I'm still only
> working P/T even now, having returned to work in July 05. I'm going to try
> to work within the ADA regs to document the disability so that I can
> continue to work and recover at the same time.  Thankfully I have a union
> behind me to provide the teeth necessary to protect me if it is both
> necessary and possible <chuckling>.  It's just another difficulty to face
> related to cancer treatment, eh?
>
>  If you haven't looked into this during the past year you'll be interested
> to know that there is a growing body of literature legitimizing a
> diagnosis of cognitive dysfunction secondary to chemotherapy.  The
> pharmacological intervention is one of the ADHD psychostimulants.  In
> fact, there is one, Focalin, I believe, which is being researched toward
> FDA approval for chemo brain, particularly related to breast CA chemo
> sequelae.  Of course, as you might expect, the primary researcher until
> mid-year last year was a researcher tied to the drug's parent company. But
> there's a Phase III trial in the works at UCLA right now, I believe and
> another study was released in San Antonio on 12/13 at a cancer conference.
>
>  So, as we know, it was NOT all in our heads!!!
>
>  How about an update on how you are doing?  I'd love to hear about your
> progress.
>
>  My best, Linda
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> Message: 2
> Date: Tue, 3 Jan 2006 14:18:27 -0500
> From: "Mott Sarah E" <mott.se@mellon.com>
> Subject: [Wellness] Synthroid vs. alternatives
> To: <wellness@womens-wellness.com>
> Message-ID:
> <55AEDD1D6C822A4EAD9BE0D310FAEA6C02E99962@E2K3MAIL1501.mellonbank.com>
> Content-Type: text/plain; charset="us-ascii"
>
> Hello ladies -
>
> I've just recently had my thyroid removed and am looking at a future of
> thyroid meds to replace it. I'm reading as much as I can about thyroid
> issues and have come to the conclusion that they are a) complicated and
> b) poorly treated by most docs.
>
> Specifically I'm focusing on the differences between Synthroid(T4 only)
> and dual-hormone (both T4 and T3) alternatives, the main one being
> natural desiccated hormone called Armour. Also whether a TSH-only test
> is adequate. Mine was normal but I'm fairly certain I'm pretty hypo- as
> was my mother.
>
> Does anyone have any experience with either of these meds? My doc
> insists Synthroid is all that's necessary, and TSH-only test is
> adequate. But I've read that  not everyone and hypos in particular do
> not convert T4 to T3 very well, and so need dual therapy. Also that the
> TSH test has come under fire as being far too wide in the "normal"
> range, and also that free T4 and T3 should be tested to ensure a proper
> conversion.
>
> Any info very much appreciated!!
>
> Thanks to all,
> Sarah
>
>
>
> Sarah E. Mott
>       AFCO/Mellon TDD
> ebis Systems 152-0300
> Phone (412) 234-9019
> Fax (412) 236-8195
> email: mott.se@mellon.com
>
> The information contained in this e-mail may be confidential and is
> intended solely for the use of the named addressee.
> Access, copying or re-use of the e-mail or any information contained
> therein by any other person is not authorized.
> If you are not the intended recipient please notify us immediately by
> returning the e-mail to the originator.(17b)
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> Message: 3
> Date: Tue, 3 Jan 2006 15:10:22 -0800
> From: "Beverly D." <bdubrin@ca.astound.net>
> Subject: Re: [Wellness] Synthroid vs. alternatives
> To: "Mott Sarah E" <mott.se@mellon.com>,
> <wellness@womens-wellness.com>
> Message-ID: <a06200706bfe0b3a7c3d0@[10.0.1.2]>
> Content-Type: text/plain; charset="us-ascii"
>
>>Sarah,
>
> I tested a bit hypo last year when I was tested for both T4 and T3.
> However, as my doc monitored me every 3 months to see where it was
> going, she only did the TSH test...I too questioned and she said it
> was sufficient. I went back to a normal range after 6 months, but
> going forward, she is only checking TSH. That's all I know.
>
> As for Synthroid, again, I have found that my doc's...internist and
> oncologist...seem to feel that it is such a "common" drug that that
> is what they prescribe. In my case, I was concerned that the Femara I
> take was causing the hypo...all denied it and Karen was the only one
> whose research came up with one article suggesting there was a
> connection.
>
> So, I am not much help to you but to point out that the medical
> community does not seem to get very excited about thyroid issues and
> is even less excited by the possible relationship to cancer
> recurrence or cancer meds.
>
> Beverly
>
>>
>>Hello ladies -
>>
>>I've just recently had my thyroid removed and am looking at a future
>>of thyroid meds to replace it. I'm reading as much as I can about
>>thyroid issues and have come to the conclusion that they are a)
>>complicated and b) poorly treated by most docs.
>>
>>Specifically I'm focusing on the differences between Synthroid(T4
>>only) and dual-hormone (both T4 and T3) alternatives, the main one
>>being natural desiccated hormone called Armour. Also whether a
>>TSH-only test is adequate. Mine was normal but I'm fairly certain
>>I'm pretty hypo- as was my mother.
>>
>>Does anyone have any experience with either of these meds? My doc
>>insists Synthroid is all that's necessary, and TSH-only test is
>>adequate. But I've read that  not everyone and hypos in particular
>>do not convert T4 to T3 very well, and so need dual therapy. Also
>>that the TSH test has come under fire as being far too wide in the
>>"normal" range, and also that free T4 and T3 should be tested to
>>ensure a proper conversion.
>>
>>Any info very much appreciated!!
>>
>>Thanks to all,
>>Sarah
>>
>>
>>
>>Sarah E. Mott
>>
>>        AFCO/Mellon TDD
>>
>>ebis Systems 152-0300
>>Phone (412) 234-9019
>>Fax (412) 236-8195
>>email: mott.se@mellon.com
>>
>>
>>
>>The information contained in this e-mail may be confidential and is
>>intended solely for the use of the named addressee.
>>Access, copying or re-use of the e-mail or any information contained
>>therein by any other person is not authorized.
>>If you are not the intended recipient please notify us immediately
>>by returning the e-mail to the originator.(17b)
>>
>>
>>_______________________________________________
>>Messages sent are the opinions of the sender and not Womens-Wellness.com
>>
>>
>>Wellness mailing list
>>Wellness@womens-wellness.com
>>http://www.pairlist.net/mailman/listinfo/wellness
>
>
> --
> **********    Beverly Dubrin's Where-To-Guide     **********
>
> Where To Go For Dining, Shopping,& Travel
> http://www.where-to-guide.com
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> ------------------------------
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> Message: 4
> Date: Mon, 9 Jan 2006 08:21:44 -0500
> From: "Karen Patterson" <Patterson@womens-wellness.com>
> Subject: [Wellness] Your Prescription Drugs BEWARE
> To: "Wellness List" <wellness@womens-wellness.com>
> Message-ID:
> <NEBBLCDEKLCOEJPMCCFCCEPJEBAB.Patterson@womens-wellness.com>
> Content-Type: text/plain; charset="iso-8859-1"
>
> Dear Members,
>
> I just went through a very scary very horrible time and I am hoping
> sharing
> my experience may save some of you from the same pain. I have been on a
> prescription Neurontin for about 5 years for nerve damage in my arm due to
> cancer treatment. I also have a prescription for ativan, an anti-anxiety
> med, I take when needed.  A few weeks ago I was busy with decorating for
> the
> holidays, planning a small party, wrapping mail gifts, etc.  After the
> party
> I began to feel very weak and anxious. This kept spiraling downward until
> by
> Christmas Eve I could not stand up with feeling sick and was extremely
> anxious all the time--to the point of extreme fear and tears.  I started
> taking the ativan which didn't seem to work like it normally did so i took
> more than one a day.  I was a zombie, could not remember things and
> started
> falling down.  My husband did some research on the ativan and thought
> that's
> what it was and because of the memory loss helped me regulate half my
> dosage
> instead of what I was taking. I had a doctor's appt (oncologist) and he
> was
> very concerned about my fragile extremely anxious state so doubled my
> ativan
> prescription and referred me to a therapist.
>
> I began to be able to hold food down and get out of bed a bit more.  I
> started writing down everything about my condition--when the anxiety was
> triggered, what triggered it, what did I do, what could I or should I have
> done to keep my anxiety level down.  Through this careful thought process
> I
> remembered a similar experience a couple of years ago.  The same crippling
> axiety my neurologist said was caused by not taking enough of the
> neurontin.
> I discussed it with my husband and we decided to try to regulate the
> neurontin again.  I put myself on an every four hour schedule and more if
> needed for pain in between.  Within a day I was regaining strength, eating
> a
> little more and putting back some of the six pounds I lost in two weeks.
> it
> took a few more days for my mood to settle out but I have been actively
> participating in life and feeling much better lately.
>
> The problem here is twofold.  I was not taking my prescription regularly
> and
> my body's need for a larger dosage had emerged without me realizing it.
> The
> effects were extreme anxiety which I attributed to the holidays and
> construction we were doing. I then began self medicating with the
> anti-anxiety drug which made absolute sense to me but had horrible results
> and ruined my Christmas.  I have not taken ativan in more than a week and
> with the drug schedule am better. BUT I am going to my doctor to discuss
> this medication.  It is the only one I take except for Actonel for bones
> once a week.  My concern is I feel I am needing to take a much greater
> dosage of this medication to quell the side effects (anxiety) rather than
> to
> address the actual physical problem.  Neurontin is a siezure medication
> and
> I think that is probably why the withdrawal or increased resistance comes
> into play.  I am not sure but I am going to do something about it possibly
> try a new drug he mentioned last time.
>
> I wanted to share this because what you are feeling is not always you.  It
> could most definitely be your medication or the dosage of or the
> combination
> of with other drugs.  It is extremely important to be aware of this.  YOU
> are the only one who knows the combinations of your drugs and we are very
> seldom well versed in the side effects.  In this case, reduced dosage.  I
> want to prevent you from going through this and all it takes is to be
> aware.
> It is not often clear and in my case because I felt I was going to have a
> breakdown I reached for an approach that worked.  Documenting everything.
>
> Well, enough about me.  I hope you have all welcomed this new year happy
> and
> well.  Continue to be diligent and educate yourself.  My best for health
> and
> total wellness,
> Karen Patterson, Founder of Womens-Wellness.com and a breast cancer
> survivor
>
>
>
> ------------------------------
>
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> End of Wellness Digest, Vol 13, Issue 1
> ***************************************
>


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