Myelin Sheaths

[Guest guest]

I posted earlier an article about embryonic stem cells and the article caught my

eye with this sentence: " These are the cells that make up the myelin sheaths

that protect nerves in the spinal cord. " Barb Heathcote had to get off Tasigna

because of tremors. She contacted Novartis and they said they didn't know what

she was talking about. Well this is post FDA approval time, and I suppose not

as much attention is paid to side effects after the fact. I was only on Tasigna

for 3 weeks and I developed tremors. It took both hands to carefully hold a cup

of coffee and everything just slipped out of my hands. I could barely hold a

pen to sign my name. Barb's doctor said it was because the myelin sheaths were

damaged. I spoke to my internist about it and he agreed, so if any of you are

having side effects that seem odd, don't hesitate to check it out and talk about

it. Now I know what purpose these myelin sheaths, also called medullary

sheaths are for, to protect the spinal chord. Just a word of warning for anyone

taking Tasigna if you have any indications of something strange, ask around and

tell your doctor. I just stopped taking it on my own and my doctor approved it,

saying I had done the right thing. As we old timers all waited for STI 571 to

be approved, no one knew of any side effects, it was supposed to be the magic

bullet and for many of us, it was. For me, it was out of nowhere that I began

learning of side effects.

We are all constructed differently, so everything will not work the same for

everyone. I am thankful that I had all of the drugs that came out - it was like

an extension on my house note, I got to live in it a little while longer. This

is an anology, but I am also thankful that I never had a problem paying my house

note. Navigating the cancer highway is difficult for everyone and moreso for

others. I hope the Ariad drug is " the one " for everyone who has not responded

to the other TKI's.

I believe everything happens for a reason and I think it improves the way we

see each other, and increases our empathy towards not only each other in this

group, but each other suffering human being. We like to have a voice to say what

we believe, but it should be tempered with restraint and to be kind and merciful

towards each other.

If there is anything I learned from my disease is to be more mindful of others

and how they are accepting of their disease. Some have never learned to handle

it and are rude to the medical staff. My mother always said you could catch

more flies with honey than vinegar. The other is to stand up for yourself and

speak up if you think you are not getting the best from your doctor. In the

genesis of my disease, I copied everything I found on leukemia and brought it to

my doctor. It went in file 13 in front of my face. He didn't take the time to

explain anything to me, everything I learned was on my own time and dime.

I appreciate this forum and all the people who stand beside me fighting for

their lives and for the people who are so generous with accolades and gifts. I

know that I am lifted up in prayer by many and it sustains me a great deal,

because no one can make it on their own, we all need each other. A kind word

goes a long way. Some have never met another person with CML, so we are their

lifeline and they ours. A man from Pakistan wrote and wanted to know if he could

" French kiss " his wife. I take time to reflect on these things each time I

open my mail box or each time someone calls me to see how I am. I appreciate

the emails that drove the hospital crazy when I was " incarcerated " and in

isolation and the coharts who called me from around the world when I was in the

BMS trial. My husband could not believe this was happening.

Most of all I appreciate and love my husband of 55 years who hovers around me in

case I " need " something. Last night I couldn't sleep and he asked if there was

anything wrong and I said I was o.k., but on,y moments later he nodded off to

sleep and I heard him scream loudly, " What happened? " He woke himself up and I

asked if he was o.k. He said he dreamed that I had fallen. So how lucky am I?

Life experience can be a wonderful thing when you can turn negatives into

positives. I smile when I see people who have a surprised look on their faces

when they see me - still alive. I don't know how long I will continue going on

and on and on, but I will take all of the days that are given me one day at a

time with a greateful heart. Sorry about the rambling, just my nature. LOL

Carpe Diem,

Lottie Duthu

FYI,

Lottie Duthu

[Guest guest]

>

> I posted earlier an article about embryonic stem cells and the article caught

my eye with this sentence: " These are the cells that make up the myelin sheaths

that protect nerves in the spinal cord. " Barb Heathcote had to get off Tasigna

because of tremors. She contacted Novartis and they said they didn't know what

she was talking about. Well this is post FDA approval time, and I suppose not

as much attention is paid to side effects after the fact. I was only on Tasigna

for 3 weeks and I developed tremors. It took both hands to carefully hold a cup

of coffee and everything just slipped out of my hands. I could barely hold a

pen to sign my name. Barb's doctor said it was because the myelin sheaths were

damaged. I spoke to my internist about it and he agreed,

___________________________________

Hi Lottie,

A bit more information for you about the myelin sheath. It does cover the nerves

and spinal cord and allows the electrical impulse to be sent along the nerve

faster and in an organized manner. The elec. impulse jumps from synapse to

synapse along the myelin sheath.

Multiple sclerosis is a demyelinating disease, where the myelin is destroyed in

areas or patches.....and this causes the symptoms of incoordination, weakness,

loss of feeling, etc. Nerves do not function normally without the myelin sheath

intact.

C.

[Guest guest]

>

> Dear Nanc,

> I suppose that would be the reason for the tremors? Barb said it took a year

to get over the tremors. I still experience some, but wondered generally how

long it would take odinarily to regenerate, do you know? What other things

happen if you don't have this sheath covering the spinal chord and nerves?

_______________________

Hi Lottie,

I think Barb actually stayed on Tasigna for much longer than you did, so her

damage was more extensive and it should take you less time to recover. Tremors

would be a form of uncoordination, caused by faulty nerve function. It obviously

is a serious side effect to pay attention to. Greater loss of this sheath would

lead to all the degenerative problems that MS patients suffer over time.

Only the central nervous system (the brain and spinal cord) does not repair

itself. Peripheral nerves (those coming from the spinal cord) repair slowly

(something like 1 millimeter a month).

When everyone was waiting for Sprycel as the first 2nd generation drug to arrive

(called super Gleevec briefly)....the animal trials were halted because all of a

sudden they were noticing some nerve tissue damage (I think this was when they

did autopsies on the brains of those monkeys). This halted the impending trials

just when our good friend Jerry M. needed this drug and it's future looked

doomed. Then they realized that they had gotten a 'bad bunch of monkeys' who had

some genetic brain deterioration and it was not from the drug.

So, our drugs are tested on animals in the lab, before there are ever human

trials.......and those who are against animal testing, well there would not be

safe cml drugs without animal testing. They actually create cml in mice to use

them to test these drugs (animal cruelty?)....this is how progress in medicine

is made.

C.