Re: [MOL] Cyber Hugs for our Beav.....And some more hugs... [00244] Medicine On Line


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Re: [MOL] Cyber Hugs for our Beav.....And some more hugs...



Hello Lillian and everyone sending me hugs. Thankyou soooo much. I have just
been feeling like I need some rest and so I did over the weekend. Hope everyone
had a nice labor day weekend. I did have a caregiver coming in for 15 hrs. a wk.
which was paid for by my husbands ins. but she had to quit because of personal
problems she had going on so I hope I will be getting a new one. I am going to
call the cancer society here and find out about support groups. I know that it
would help me some. Thanks again.......and sending hugs back.
((((((((((U)))))))))))    Beav

Lillian wrote:

> Girlfriend, that is a very heavy load on your shoulders.  I will try to
> research tonight and see if there's some more help out there for you.  I
> know our Department of Social Services has a visiting nurse assoc. that
> come's out for a few hour's a day; but I need to check if their is a cost
> involvement.  We need to find you some free help.  Even if you are Super
> Woman this just can not be done alone, you have to have some time to
> yourself in order to give to your husband.  In no way am I implying that you
> are not doing an outstanding job for your husband.  It is you that I am
> concerned about.  Sure, this is the best group on cyber hwy. and everyone
> does the very best they can to help and I know we all love you.  It's just
> that you need more friend and I will do my best to see whats out there for
> you.  Love you, 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: Friday, September 01, 2000 1:59 PM
> Subject: 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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