[MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO? [00002] Medicine On Line


[Date Prev][Date Next][Thread Prev][Thread Next][Date Index][Thread Index]

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



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
> > >>>>>>
> > >>>>>>
> > >>>>
> > >>>>
_________________________________________________________________________
> > >>>>>> Get Your Private, Free E-mail from MSN Hotmail at
> > >>>>> http://www.hotmail.com.
> > >>>>>>
> > >>>>>> Share information about yourself, create your own public profile
at
> > >>>>>> http://profiles.msn.com.
> > >>>>>>
> > >>>>>>
> >
>>> ------------------------------------------------------------------------
> > >>>>>> This is an automatically-generated notice.  If you'd like to be
> > >>> removed
> > >>>>>> from the mailing list, please visit the Medicine-On-Line
Discussion
> > >>>>> Forum
> > >>>>>> at <http://www.meds.com/con_faq.html>, or send an email message
to:
> > >>>>>> majordomo@lists.meds.com
> > >>>>>> with the subject line blank and the body of the message
containing
> > >>> the
> > >>>>> line:
> > >>>>>> unsubscribe mol-cancer your-email-address
> > >>>>>> where the phrase your-email-address is replaced with your actual
> > >>> email
> > >>>>>> address.
> > >>>>>>
> >
>>> ------------------------------------------------------------------------
> > >>>>>
> > >>>>>
> > >>>>>
> > >>>>
> >
>>>> -----------------------------------------------------------------------
-
> > >>>>> This is an automatically-generated notice.  If you'd like to be
removed
> > >>>>> from the mailing list, please visit the Medicine-On-Line
Discussion
> > >>> Forum
> > >>>>> at <http://www.meds.com/con_faq.html>, or send an email message
to:
> > >>>>> majordomo@lists.meds.com
> > >>>>> with the subject line blank and the body of the message containing
the
> > >>>>> line:
> > >>>>> unsubscribe mol-cancer your-email-address
> > >>>>> where the phrase your-email-address is replaced with your actual
email
> > >>>>> address.
> > >>>>
> >
>>>> -----------------------------------------------------------------------
-
> > >>>>
> > >>>>
> > >>>
_________________________________________________________________________
> > >>>> Get Your Private, Free E-mail from MSN Hotmail at
> > >>> http://www.hotmail.com.
> > >>>>
> > >>>> Share information about yourself, create your own public profile at
> > >>>> http://profiles.msn.com.
> > >>>>
> >
>>>> -----------------------------------------------------------------------
-
> > >>>> This is an automatically-generated notice.  If you'd like to be
removed
> > >>>> from the mailing list, please visit the Medicine-On-Line Discussion
> > >>> Forum
> > >>>> at <http://www.meds.com/con_faq.html>, or send an email message to:
> > >>>> majordomo@lists.meds.com
> > >>>> with the subject line blank and the body of the message containing
the
> > >>> line:
> > >>>> unsubscribe mol-cancer your-email-address
> > >>>> where the phrase your-email-address is replaced with your actual
email
> > >>>> address.
> >
>>>> -----------------------------------------------------------------------
-
> > >>>
> > >>>
> > >>>
> >
>>> ------------------------------------------------------------------------
> > >>> This is an automatically-generated notice.  If you'd like to be
removed
> > >>> from the mailing list, please visit the Medicine-On-Line Discussion
Forum
> > >>> at <http://www.meds.com/con_faq.html>, or send an email message to:
> > >>> majordomo@lists.meds.com
> > >>> with the subject line blank and the body of the message containing
the
> > >>> line:
> > >>> unsubscribe mol-cancer your-email-address
> > >>> where the phrase your-email-address is replaced with your actual
email
> > >>> address.
> >
>>> ------------------------------------------------------------------------
> > >>
> > >>
_________________________________________________________________________
> > >> Get Your Private, Free E-mail from MSN Hotmail at
http://www.hotmail.com.
> > >>
> > >> Share information about yourself, create your own public profile at
> > >> http://profiles.msn.com.
> > >>
> >
>> ------------------------------------------------------------------------
> > >> This is an automatically-generated notice.  If you'd like to be
removed
> > >> from the mailing list, please visit the Medicine-On-Line Discussion
Forum
> > >> at <http://www.meds.com/con_faq.html>, or send an email message to:
> > >> majordomo@lists.meds.com
> > >> with the subject line blank and the body of the message containing
the line:
> > >> unsubscribe mol-cancer your-email-address
> > >> where the phrase your-email-address is replaced with your actual
email
> > >> address.
> >
>> ------------------------------------------------------------------------
> > >
> > >
> > >
> >
> ------------------------------------------------------------------------
> > > This is an automatically-generated notice.  If you'd like to be
removed
> > > from the mailing list, please visit the Medicine-On-Line Discussion
Forum
> > > at <http://www.meds.com/con_faq.html>, or send an email message to:
> > > majordomo@lists.meds.com
> > > with the subject line blank and the body of the message containing the
line:
> > > unsubscribe mol-cancer your-email-address
> > > where the phrase your-email-address is replaced with your actual email
> > > address.
> >
> ------------------------------------------------------------------------
> >
> > ------------------------------------------------------------------------
> > This is an automatically-generated notice.  If you'd like to be removed
> > from the mailing list, please visit the Medicine-On-Line Discussion
Forum
> > at <http://www.meds.com/con_faq.html>, or send an email message to:
> > majordomo@lists.meds.com
> > with the subject line blank and the body of the message containing the
line:
> > unsubscribe mol-cancer your-email-address
> > where the phrase your-email-address is replaced with your actual email
> > address.
> > ------------------------------------------------------------------------
>
>
>
> ------------------------------------------------------------------------
> This is an automatically-generated notice.  If you'd like to be removed
> from the mailing list, please visit the Medicine-On-Line Discussion Forum
> at <http://www.meds.com/con_faq.html>, or send an email message to:
> majordomo@lists.meds.com
> with the subject line blank and the body of the message containing the
line:
> unsubscribe mol-cancer your-email-address
> where the phrase your-email-address is replaced with your actual email
> address.
> ------------------------------------------------------------------------
>

------------------------------------------------------------------------
This is an automatically-generated notice.  If you'd like to be removed
from the mailing list, please visit the Medicine-On-Line Discussion Forum
at <http://www.meds.com/con_faq.html>, or send an email message to:
majordomo@lists.meds.com
with the subject line blank and the body of the message containing the line:
unsubscribe mol-cancer your-email-address
where the phrase your-email-address is replaced with your actual email
address.
------------------------------------------------------------------------