Re: [MOL] Myelo Dysplasia - Anyone!! Can you give me any INFO? [00016] Medicine On Line


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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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