Re: [MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO? [00020] Medicine On Line


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Re: [MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO?



Thanks Beav,
I guess that it is all in the Lords Hands now.  His prognosis today was
disheartening.  It has been 10 days and he continues to go downhill, if by
Friday he is not improving, they will take a bone biopsy from the stearnum
to see if he has any marrow left.  if not.....  His fever is down to 99
today and his white count is lower than .5  I am sure he will warrent
another transfusion shortly.  Thanks to all of you who have us in your
Prayers!!!  And what WONDERFUL NEWS for Carol O.!!!!!!!!!   LIght at the end
of the tunnel!!!
Pauli
----- Original Message -----
From: <beav76@uswest.net>
To: <mol-cancer@lists.meds.com>
Sent: Sunday, October 01, 2000 5:11 PM
Subject: Re: [MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO?


> Hi Pauli;
>     All I can tell you is what I have experienced dealing with my
husband's
> cancer and what we have been through.. His white count was down to 2.8 and
our
> dr. started showing concern then. The bottom end of normal I was told is
5. Our
> dr. said when it goes down to 2 or below infections can set in that the
body
> can't fight off because it simply has no defense left. I think you are
doing the
> right thing masking up. I could be wrong but I would be getting 2nd
opinions
> from drs. One thing I have noticed, depending on what type of medical ins.
your
> father has, depends on what kind of trtmts. they do. I have to have state
ins.
> because I cannot work, I take care of my husband fulltime. The ins. I have
for
> colon cancer for instance would not do any diagnostic trtmt. until I am
passing
> blood in my stool. They just can't look for cancer first they have to go
through
> all the steps that the insurance tells the drs. to do. Even though my side
> hurts, they will not do a colonoscopy (s.p.?) so they stell me that is
probably
> stress. I don't know if this is why your dad has not been treated for
leukemia
> from the start, all I know is what we have been through.  Whatever happens
> though, one thing I firmly believe is you only know what you know. You do
the
> best you can with what you know. I try not to be down on myself because I
didn't
> know how to get better trtmt. for my husband but I just know that I am
doing my
> best. It is a very hard thing to watch someone else suffer and not be able
to
> give them an asperin and just make it go away. My heart goes out to you
and your
> family. Hopefully you get more info. from someone else here that can help
you
> more.......Prayers and more prayers.  Your friend,   Beav
>
> Pauli Franklin wrote:
>
> > I am in need of some major information.  My Dad has leukemia, that
started
> > out as Myelo Dysplasia.  I have not agreed with his choice to stay with
the
> > local Dr.s.  I had wanted him to go to Moffit.  They didn't treat the
Myelo
> > Dysplasia, they have done periodic tests and a few blood transfusions
over
> > the last couple years.  A month ago he bottomed out, the did a Bone
biopsy
> > (which hadn't been done since last Oct.) and it showed that it has now
> > turned to leukemic cells.  They hospitalized him and waited for the
further
> > results to come in.  They said that at this point that it was time to do
> > Chemotherapy, when all the results came in the Dr. said that his marrow
was
> > so bad that it was disintegrating on its own.  He said that he could not
do
> > the traditional "leukemic" treatment on him, it would be too strong.
That
> > he would treat him with a Myelo Dysplasia treatment (which is what he
had
> > for 2 years..... without any treatment!) and we would hope that it
didn't
> > kill ALL of his marrow; if it did he would die.   Now I don't understand
why
> > they weren't treating him in the beginning for Myelo Dysplasia if there
is a
> > treatment regiment for it.  Is there something that I just don't
understand?
> > The Dr. told him he would be in the hospital for 4-6 weeks.  Well he
started
> > chemo (it will be 2 weeks ago this monday-tomorrow) they did the
treatment
> > for 5 days, mon-fri.  On Sat. he started to run fever.   I realize that
> > there are many side-effects to chemo, he has had the sores in this mouth
and
> > throat, stomache cramps and pain. But he spent 3 days in ICU for
> > sub-humaneous bleeding on his knees and feet.  He has had several
> > transfusions, many platelets, I just don't have any idea what is
"normal".
> > They had a reading on his white count on Friday, said it went from .1 to
1.5
> > and that his temp. was normal.  Yesterday I felt like the bottom fell
out.
> > His white count was .5 and he is running a fever again.  He has the
hiccups
> > and the Dr. seemed to think that it might be a virus, they cultured his
> > throat and said it would take 3 days for those results.  When we go to
> > visit, we scrub and wear masks.  Not because we are required, but
because we
> > don't want to take chances.  Yet the nurses never mask up.  Is this not
> > compromising his situation?  There is just so much I have questions on
and
> > so many things that I wish had been done differently....  Is there any
> > advise or information any one can give me, to help us make the right
> > decisions and deal with this correctly?
> >
> > Thank you, Pauli Franklin
> >
> > ----- Original Message -----
> > From: <beav76@uswest.net>
> > To: <mol-cancer@lists.meds.com>
> > Sent: Sunday, October 01, 2000 12:04 AM
> > Subject: Re: [MOL] Hey there, I need help.
> >
> > > Joicy;
> > >    You may want to get another opinion on that, I as a groomer have
had to
> > clip
> > > nails that have grown in a complete circle and caused the dog to limp.
> > This
> > > particular dog owner came in and was commenting on how the dog had
> > recently started
> > > to limp. On the curl back around it was poking into the pad on dog's
foot.
> > That has
> > > happened on more then one occasion. If you excercise your dog
regularly so
> > that the
> > > nails wear down, that is fine but you still have to keep an eye on the
dew
> > claws (if
> > > your dog has them) for they will also grow completely around into a
> > circle, in this
> > > case most dogs snag them and break them but then I've seen them bleed
then
> > because
> > > they have broken to short. I have never in all my yrs. of grooming
heard a
> > vet say
> > > that nails didn't have to be trimmed. Only thing I can think of is if
he
> > or she
> > > knows if your dog is active.  Your bewildered dog friend,  Beav
> > >
> > > Joicy wrote:
> > >
> > > > Just a note about the toenails...I was asking my vet about this, and
> > he's
> > > > probably in the minority, but says "don't bother with it!" He said
> > except
> > > > for showing, it just isn't necessary. Boy was I glad to hear that!
Love,
> > > > Joicy
> > > >
> > > > > From: beav76@uswest.net
> > > > > Reply-To: mol-cancer@lists.meds.com
> > > > > Date: Sat, 30 Sep 2000 13:35:02 -0700
> > > > > To: mol-cancer@lists.meds.com
> > > > > Subject: Re: [MOL] Hey there, I need help.
> > > > >
> > > > > Hi Bridget;
> > > > > It is hard to tell you exactly because I don't know how choppy the
cut
> > is,
> > > > > but what you would do is comb the hair over the eyes towards you,
and
> > start at
> > > > > right or left side and trim straight across however close you want
the
> > bangs
> > > > > to
> > > > > be.  If he has any hair that is growing in the corners of his eyes
> > covering
> > > > > the
> > > > > eyes just trim them, left eye at this angle / and right eye at
this
> > angle \ .
> > > > > That will keep the hair from growing up over his eyes. You may
have to
> > comb
> > > > > the
> > > > > hair above his eyes and trim a couple of times to get it even. How
is
> > the
> > > > > length
> > > > > of his coat coming along? Are you able to brush it to keep it from
> > tangling or
> > > > > maybe it is not that long yet?  You can scissor around his rear so
he
> > doesn't
> > > > > get any dingleberrys hanging from there. If he doesn't like you
doing
> > anything
> > > > > back there just keep working with him until he understands you are
not
> > going
> > > > > to
> > > > > hurt him. You may not even have that problem with dingleberrys
(poo
> > poo) if
> > > > > his
> > > > > hair isn't long enough to tangle it into his hair. They have stuff
> > called
> > > > > quick
> > > > > stop or whatever, it is used to stop bleeding on the nails if you
> > should
> > > > > happen
> > > > > to cut one to short. Don't be alarmed if that happens it will stop
> > bleeding
> > > > > immediatley when you put that powder on then nail. Most people
don't
> > clip that
> > > > > close but it could happen and I'm just telling in case it happens.
> > There
> > > > > should
> > > > > be some kind of  do it yourself dog grooming book at a bookstore
or
> > maybe
> > > > > petsmart that kind of walk you through it. I am going off line for
a
> > week
> > > > > because of plumbing project we have to move to a guest apt. Hope
this
> > info.
> > > > > can
> > > > > help you some. Take care,   Beav
> > > > >
> > > > > Bridget Rambeau wrote:
> > > > >
> > > > >> Hi Beav. I'd love those tips on the easy trim as I did a rather
> > "choppy"
> > > > >> job. But he seems to like it so that's the main thing.
> > > > >> I know what you mean about how they love to play. Sox is the same
way
> > and
> > > > >> doesn't hesitate to let you know when it's playtime. He just
stares
> > at you
> > > > >> until you get up and then he starts jumping on you; that's the
cue.
> > He does
> > > > >> this to my roomie every night about 1/2 hr after she gets home,
he
> > just
> > > > >> gives her time to change and relax a bit. Of course, we're both
as
> > bad as
> > > > >> him and sometimes he has to hide to get away from us. He also
loves
> > to growl
> > > > >> and play the big, fierce dog and then gets real smug when he
thinks
> > he's
> > > > >> won. Sounds like our dogs would get along great, sometime maybe
we
> > can
> > > > >> introduce them. That would be a real blast. What a tremendous
amount
> > of joy
> > > > >> they give us, don't you think?
> > > > >> And I'd love those tips you spoke of, if it's no trouble.
> > > > >> Sorry I've rambled so.
> > > > >> Your dog-lovin' friend,
> > > > >> Bridget
> > > > >>
> > > > >>> From: beav76@uswest.net
> > > > >>> Reply-To: mol-cancer@lists.meds.com
> > > > >>> To: mol-cancer@lists.meds.com
> > > > >>> Subject: Re: [MOL] Hey there, I need help.
> > > > >>> Date: Thu, 28 Sep 2000 21:04:32 -0700
> > > > >>>
> > > > >>> Good luck Bridget, if you have any problems I'll be happy to
help
> > you in
> > > > >>> any
> > > > >>> way. I can give you some helpful hints on a cute and easy trim
for
> > his
> > > > >>> face. I'm
> > > > >>> so happy for Sox because over the years I have seen many pups
and
> > dogs that
> > > > >>> didn't have a loving mommy like he has... I love to play games
with
> > my dog
> > > > >>> when
> > > > >>> it's cookie time. I throw his bisquit and he runs for it and we
both
> > > > >>> scramble to
> > > > >>> get it but I always let him win. He gets the biggest charge out
of
> > that.
> > > > >>> Thinks
> > > > >>> he is really hot stuff. He will hide under the table now before
I
> > throw the
> > > > >>> "cookie", and come darting out and he always grawls when he
runs. It
> > is so
> > > > >>> funny.....Your friend,   Beav
> > > > >>>
> > > > >>> Bridget Rambeau wrote:
> > > > >>>
> > > > >>>> Thanks Beav for your comments. Actually, there are numerous
fund
> > raising
> > > > >>>> events held for cancer all across the country. But it appears
most
> > of
> > > > >>> these
> > > > >>>> events are to raise money for research. And a good number are
> > directed
> > > > >>>> specifically towards breast cancer research. While this in
itself
> > is not
> > > > >>> a
> > > > >>>> bad thing, I think what's happeneing is everybody wants to be
first
> > in
> > > > >>> the
> > > > >>>> race for a cure but in the meantime those already suffering
from
> > the
> > > > >>> disease
> > > > >>>> are doing without some of the facilities and txs that could
help
> > them or
> > > > >>> at
> > > > >>>> least make access to that easier. And, as usual, focus is on
those
> > areas
> > > > >>>> with the larger population base while other areas go somewhat
> > neglected.
> > > > >>>> Needless to this, this is all just my opinion from my own
> > experience and
> > > > >>>> research and is by no means fact.
> > > > >>>> By the way, Sox will now let me groom him with no problem, at
least
> > with
> > > > >>>> comb and scissors. Unfortunately, I'm no stylist so his haircut
> > will
> > > > >>> receive
> > > > >>>> no medals, that's for sure. But at least I can see his big,
> > beautiful
> > > > >>> eyes
> > > > >>>> as he begs for his treats. Next is to try cutting his nails.
Wish
> > me
> > > > >>> luck.
> > > > >>>> AND THANKS, i COULDN'T HAVE DONE THIS WITHOUT YOU AND EVERYONE
else
> > WHO
> > > > >>>> SPURRED ME ON.
> > > > >>>> yOUR FRIEND,
> > > > >>>> bRIDGET
> > > > >>>>
> > > > >>>>> From: beav76@uswest.net
> > > > >>>>> Reply-To: mol-cancer@lists.meds.com
> > > > >>>>> To: mol-cancer@lists.meds.com
> > > > >>>>> Subject: Re: [MOL] Hey there, I need help.
> > > > >>>>> Date: Wed, 27 Sep 2000 10:40:36 -0700
> > > > >>>>>
> > > > >>>>> Hi Bridget;
> > > > >>>>> That really surprised me that Canada is so far behind the
times
> > > > >>> with
> > > > >>>>> cancer.  Do you have any fund drives to raise money in Canada
for
> > > > >>> cancer?
> > > > >>>>> They
> > > > >>>>> have marathons here every yr. for all differant types of
diseases
> > but
> > > > >>>>> cancer is
> > > > >>>>> a big one. One of my favorite singers, from Canada maybe could
rai
> > se an
> > > > >>>>> awareness and funds for cancer, Celine Dion!!  Maybe it's just
one
> > of
> > > > >>> those
> > > > >>>>> things in your country that is kept quiet for some reason.
Anyway,
> > just
> > > > >>>>> thought
> > > > >>>>> I would mention that, your doggie friend,  Beav
> > > > >>>>>
> > > > >>>>> Bridget Rambeau wrote:
> > > > >>>>>
> > > > >>>>>> Hi Andrea.
> > > > >>>>>> This is Bridget here and I live in Halifax, N.S. but was
living
> > in
> > > > >>> N.B.
> > > > >>>>> when
> > > > >>>>>> I was dx and rec'd my txs.
> > > > >>>>>> In response to your question, yes I do think we are lagging
> > behind
> > > > >>> the
> > > > >>>>>> Americans. Specifically, for patients who live outside a
major
> > > > >>> centre,
> > > > >>>>> there
> > > > >>>>>> is often considerable travel involved to receive treatment,
> > > > >>> especially
> > > > >>>>>> surgery or radiation and/or long delays between diagnosis and
> > > > >>> treatment.
> > > > >>>>> In
> > > > >>>>>> some cases, at least in N.B., I've recently been told that
> > patients
> > > > >>> must
> > > > >>>>>> travel to the U.S.A. (Maine) to receive txs because the
waiting
> > list
> > > > >>> is
> > > > >>>>> so
> > > > >>>>>> long at home. In my own case, I had to travel to another
province
> > > > >>> (N.S.)
> > > > >>>>> for
> > > > >>>>>> my surgeries and another city (Saint John) for my radiation
txs
> > as
> > > > >>> it's
> > > > >>>>> not
> > > > >>>>>> available in Fredericton where I lived.
> > > > >>>>>> Also, it is much more difficult to get in on any clinical
trials
> > in
> > > > >>>>> Canada
> > > > >>>>>> than it is in the U.S. In some cases, this can make the
> > difference
> > > > >>>>> between
> > > > >>>>>> life and death.
> > > > >>>>>> Lastly, (and this may just be a matter of perception) the
> > American
> > > > >>>>> Cancer
> > > > >>>>>> Society seems to be much more involved and aggresive
politically
> > > > >>> than
> > > > >>>>> here
> > > > >>>>>> in Canada. In some places there aren't even any support
groups
> > for
> > > > >>>>> patients
> > > > >>>>>> to attend and the Cancer Society doesn't seemed to be
concerned
> > by
> > > > >>> this.
> > > > >>>>>> They should be.
> > > > >>>>>> As to what could be done the bottom line in most cases comes
down
> > to
> > > > >>>>> dollars
> > > > >>>>>> and cents. There needs to be more funding for additional
> > treatment
> > > > >>>>> centres,
> > > > >>>>>> clinical trials and public awareness of what is available and
> > being
> > > > >>>>> done.
> > > > >>>>>> While I believe we are doing a pretty good job so far as
research
> > > > >>> goes,
> > > > >>>>> this
> > > > >>>>>> does little to help those of us who already suffer from the
> > disease.
> > > > >>>>> Also,
> > > > >>>>>> there appears to be an improportianate amount of funds being
> > devoted
> > > > >>> to
> > > > >>>>> a
> > > > >>>>>> few types of cancer and little available for other types. I
> > believe
> > > > >>>>> there
> > > > >>>>>> should be a better balance especially as it concerns more
> > aggressive
> > > > >>>>> cancers
> > > > >>>>>> that are often terminal if not treated quickly. Both the
Canadian
> > > > >>> Cancer
> > > > >>>>>> Society and the Gov't need to be more in tune to the needs of
> > > > >>> Canadians
> > > > >>>>> as I
> > > > >>>>>> do not believe they are currently as conscientious as they
should
> > > > >>> be.
> > > > >>>>>> Hope this is what you were looking for.
> > > > >>>>>> Bridget
> > > > >>>>>>
> > > > >>>>>>> From: "jennifer baker" <jenbaker@3web.net>
> > > > >>>>>>> Reply-To: mol-cancer@lists.meds.com
> > > > >>>>>>> To: <mol-cancer@lists.meds.com>
> > > > >>>>>>> Subject: [MOL] Hey there, I need help.
> > > > >>>>>>> Date: Tue, 26 Sep 2000 14:41:28 -0400
> > > > >>>>>>>
> > > > >>>>>>> Hi everyone,
> > > > >>>>>>>
> > > > >>>>>>> This is Andrea Deschenes...I was a part of the forum last
year
> > when
> > > > >>> my
> > > > >>>>> mom
> > > > >>>>>>> was diagnosed with colon cancer.  Unfortunately, she passed
away
> > > > >>> this
> > > > >>>>>>> summer.
> > > > >>>>>>>
> > > > >>>>>>> I'm doing okay but I need you help now.  I'm in broadcasting
at
> > > > >>> Ryerson
> > > > >>>>> and
> > > > >>>>>>> I'm doing a story on Cancer and whether or not we, as a
society
> > of
> > > > >>>>> cancer
> > > > >>>>>>> patients, are losing faith/confidence in our Cancer care
> > systems.
> > > > >>>>>>>
> > > > >>>>>>> There is an article at Canoe.com called "Canada Lagging in
> > Treating
> > > > >>>>> Cancer"
> > > > >>>>>>> which pretty much states that Americans are fairing better
than
> > > > >>>>> Canadians
> > > > >>>>>>> in regards to survival rates.
> > > > >>>>>>>
> > > > >>>>>>> So, I would like to hear what you guys have to say.  You
were
> > > > >>> always
> > > > >>>>> such a
> > > > >>>>>>> great help to me when my mom was sick that I really value
your
> > > > >>>>> opinions.  I
> > > > >>>>>>> know that all your answers and/or opinions are sincere.
> > > > >>>>>>>
> > > > >>>>>>> Questions:  Are Canadians losing confidence in the national
> > cancer
> > > > >>> care
> > > > >>>>>>> system?  What problems do you see with the current system?
and
> > how
> > > > >>> can
> > > > >>>>>>> these problems be improved?
> > > > >>>>>>>
> > > > >>>>>>> Please contact me at andreadeschenes@hotmail.com ASAP (as I
have
> > a
> > > > >>>>>>> deadline!!!)
> > > > >>>>>>>
> > > > >>>>>>> I appreciate your help very much and hope that everyone is
doing
> > as
> > > > >>>>> well as
> > > > >>>>>>> can be expected.  The one lesson the forum (and thus, all of
you
> > in
> > > > >>> it)
> > > > >>>>>>> taught me was to keep my chin up and always think
positively.  I
> > > > >>> will
> > > > >>>>> never
> > > > >>>>>>> forget that.
> > > > >>>>>>>
> > > > >>>>>>> Thanks for everything,
> > > > >>>>>>> Andrea Deschenes
> > > > >>>>>>
> > > > >>>>>>
> > > > >>>>
> > > > >>>>
> >
_________________________________________________________________________
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at <http://www.meds.com/con_faq.html>, or send an email message to:
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unsubscribe mol-cancer your-email-address
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