Re: [MOL] Cyber Hugs for our Beav..... [00044] Medicine On Line


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Re: [MOL] Cyber Hugs for our Beav.....



Lillian;
    I find more support here (forum) then anywhere else. My brother lives 10
minutes from me but they lost there son to cystic fibrosis last summer and they
have been going through some real traumatic adjustments, they are finally
starting to come around. Otherwise it's just me and my husband. I take care of
him fulltime. He is completely disabled and we try to live on his disability
check and food stamps. It's been really hard and most of the time I try not to
think about it but just do what I have to do. We live in the suburbs of Phoenix
in a city called Gilbert. I do have a social worker coming over once in awhile
from outreach in hospice. She has helped me keep it together quite a bit. I can
find a support group which I should have done by now it is just something that
seems easy to put off. Thanks for the hugs.......Love u too......Beav

Lillian wrote:

> You know Beav, many of us know exactly how you are feeling and it is good to
> express your feelings.  I know you have been a rock to your dear hubby; but
> even a rock can take wear and tear.
>
> I don't believe you have mention what type of support system you have close
> by to you.  I also can not recall if you are working full time and
> caregiving or a full time caregiver.  If my memory is correct full time
> caregiver and I do remember your age; but I won't blab it!
>
> Do you live in the country, small town, large town, or city?  I will do some
> researching for you on what may be available to help you out there if you
> would like.
>
> Meanwhile Tonia has the pity pot and will have to send it to you friend.
> The rest of us are going to send you great big Cyber Hugs.  love you,
> lillian
>
> <<<<<< ()    ()    ()    ()    ()    ()    ()    ()   ()>>>>>>>>>
>
> Now your the expert on computer language did I do that right and did I send
> you enough?
>
> We invite you to take a look at our Album.
> www.angelfire.com/sc/molangels/index.html
>
>   ( Very informational, good tips, Molers pictures, art work and much
> more....
>
> ----- Original Message -----
> From: <beav76@uswest.net>
> To: <mol-cancer@lists.meds.com>
> Sent: Thursday, August 31, 2000 9:13 PM
> Subject: Re: [MOL] TSH TEST/PORT/BEAV
>
> > I'll check into that Lillian on the infection, I have a lot of things but
> > somewhere along the 3 yrs or so I've gotten so burnt out, one would think
> that
> > there's nothing to it to get copies but I have reached a point just before
> my
> > respit that if I had to look at one more pill I was going to just scream
> and I
> > kept dropping things all the time. So I try to not overload and cut back
> on alot
> > of things. As I see him deteriorating I think, what's the use, I'm just
> gonna
> > throw all this stuff away someday. I guess I need the pity pot it sounds
> like
> > huh?.....Beav
> >
> > Lillian wrote:
> >
> > > The Doctor more than likely meant the new drug was approved by the FDA
> and I
> > > really hope this is the one to do the trick for Bucky.  If they are
> drawing
> > > blood it takes very little effort; but to send some off for the TSH test
> and
> > > since we already know that chemo and radiation can throw the tyroid out
> of
> > > whack, what is the harm.  Also, didn't Bucky get a port put in?  That is
> > > another area that the medical field almost looks at last for infection.
> > > It's just some ideas, does not mean I am right; but it never hurts to
> check
> > > it our.  Better to be safe than sorry.  By the way Beav do you get
> copies of
> > > all medical reports, biopsies and pathology reports. One would be amazed
> at
> > > what they can learn from them.  My prayers always, your friend, lillian
> > >
> > > We invite you to take a look at our Album.
> > > www.angelfire.com/sc/molangels/index.html
> > >
> > >   ( Very informational, good tips, Molers pictures, art work and much
> > > more....
> > >
> > > ----- Original Message -----
> > > From: <beav76@uswest.net>
> > > To: <mol-cancer@lists.meds.com>
> > > Sent: Thursday, August 31, 2000 3:00 PM
> > > Subject: Re: [MOL] Thalidimide...
> > >
> > > > Lillian;
> > > >     Went to onc. today. Bucky is running a low grade fever and his
> right
> > > leg
> > > > (w/cancer) has been swelling and increased pain in hip so I just have
> to
> > > let
> > > > whatever manifest itself because they don't know what is going on yet.
> > > > Complications with antibiotics is why they want to wait and see and
> keep
> > > him off
> > > > them as long as possible. Possible infection in leg or pnuemonia
> trying to
> > > come
> > > > back. w/c was up to 3.2 from 2.8 so that is good but is still low. He
> said
> > > with
> > > > all his problems a tsh test is the least of his worries and that the
> > > primary
> > > > care dr. can take care of that. He has been feeling better the last 2
> days
> > > in
> > > > spite of the increased pain and we are taking every minute of that and
> > > doing the
> > > > best we can with it. Chest x-ray looked good with no mets to the lungs
> > > which is
> > > > really good news. We are waiting for Dr. Lobelle to respond on new
> drug fo
> > > r
> > > > sarcomas. Wasn't clear whether it is approved for trials or by fda. He
> was
> > > in
> > > > clinic when he called and I didn't think to ask. Hope all is still
> going
> > > well at
> > > > your house.  Your frend, Beav
> > > >
> > > > Lillian wrote:
> > > >
> > > > > Beav:  Dr. Lobelle is right, they are finding that one has to take
> > > another
> > > > > drug along with thalidomide.  It was in some of the information that
> I
> > > had
> > > > > sent out.  If you want to look it up go to the forums archives. Your
> > > friend,
> > > > > lillian
> > > > >
> > > > > We invite you to take a look at our Album.
> > > > > www.angelfire.com/sc/molangels/index.html
> > > > >
> > > > >   ( Very informational, good tips, Molers pictures, art work and
> much
> > > > > more....
> > > > >
> > > > > ----- Original Message -----
> > > > > From: <beav76@uswest.net>
> > > > > To: <mol-cancer@lists.meds.com>
> > > > > Sent: Wednesday, August 30, 2000 9:30 AM
> > > > > Subject: Re: [MOL] mycosis fungoides
> > > > >
> > > > > > Amocci;
> > > > > >      This is a very tough time, we have been there several times.
> The
> > > > > doctor we
> > > > > > have had most sucess with and seems to want to cure his patients
> (if
> > > one
> > > > > thing
> > > > > > doesn't work he will research what else is available) is a cancer
> > > research
> > > > > doctor
> > > > > > located in Tucson,Az. We highly recommend him because he will go
> past
> > > the
> > > > > call of
> > > > > > duty for his patients and has been known to sit at their bedside
> in
> > > their
> > > > > final
> > > > > > moments if nothing else worked. He works at the cancer center in
> > > > > Tucson,Az. (520)
> > > > > > 626-6824 his name is Dr. Michael Lobelle. I talked to him
> yesterday
> > > > > because of
> > > > > > the frustrations we are going through and he told me a new drug is
> > > being
> > > > > approved
> > > > > > for clinical trials on thursday that would help for sarcomas which
> is
> > > what
> > > > > our
> > > > > > problem is. He also said they are in trials with some vaccines.
> The
> > > main
> > > > > research
> > > > > > nurses phone no. is (520) 626-6787. You find out general info.
> from
> > > there
> > > > > if you
> > > > > > want to investigate first, Marilyn is her name. My husband would
> not
> > > be
> > > > > alive
> > > > > > today if it wern't for this Dr.. The only reason we have not been
> with
> > > him
> > > > > > through the Thalidimide, is insurance. The onc. we have now
> reduced my
> > > > > husband
> > > > > > down to 150mg. because of low w/c count. Yesterday when I spoke to
> Dr.
> > > > > Lobelle he
> > > > > > told me that doesage is completely ineffective and we have to do
> some
> > > > > thing else
> > > > > > and was estactic that he has this drug coming this week. He tells
> you
> > > the
> > > > > truth
> > > > > > and won't leave you hanging because "you've got cancer and your
> going
> > > to
> > > > > die
> > > > > > attitude". Well that's all I have to offer you, we did try some
> > > > > alternative
> > > > > > therapys that boost the immune system in Tijuana,Mexico. All b.s.
> > > aside it
> > > > > works.
> > > > > > I have seen it work on many patients myself plus I took 3
> injections
> > > for
> > > > > > pnuemonia and I can verify that it will boost the immune sytem so
> it
> > > can
> > > > > fight.
> > > > > > Sometimes you have to try anything that can atleast prolong life
> until
> > > > > something
> > > > > > comes along that may be the cure.Anyway the ph. in Tijuana is
> > > > > 1-800-785-0490. I
> > > > > > know there have been some posts on Drs. down there. I would highly
> > > > > recommend this
> > > > > > for someone who has been battered with chemo and radiation. It
> brings
> > > your
> > > > > > strength back. Good luck.....Beav
> > > > > >
> > > > > > AMocci9820@aol.com wrote:
> > > > > >
> > > > > > > molers,
> > > > > > > I need your help as a group.This is what this forum is all about
> > > no?Ive
> > > > > > > posted some
> > > > > > > questions and the only one that has responded was lilian?My mom
> dx
> > > with
> > > > > sclc
> > > > > > > with mets to brain, now lymph node in chest and groin,possible
> > > > > liver.What can
> > > > > > > we expect?Be honest Im already
> > > numb.dx4/00,radiation5/00,chemo6/00.Chemo
> > > > > > > doesnt appear to be working.
> > > > > > > Were exploring dr.Nagourney in california he says he is only one
> of
> > > two
> > > > > in
> > > > > > > the country that will perform a chemo sensetivity test.With 90
> > > percent
> > > > > > > accuracy he will tell you what cocktail to use.Obviously he
> needs a
> > > gram
> > > > > of
> > > > > > > tumor.Which now doesnt seem a problem.
> > > > > > > also trying to line up alternatives.That is difficult cause who
> > > knows
> > > > > the
> > > > > > > right answer.
> > > > > > > Any input about a vaccine?anti angenesis
> > > drugs?antineoplastons.HELPPPPP
> > > > > > > throw out some input.Money is not an issue.
> > > > > > > amocci
> > > > > >
> > >
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