Re: Remember Me?

[Guest guest]

Judi,

My prayers are with you and hopes that maybe you can be surgery free for a

little while.

I admire you very much, for thinking of others even when you are having problems

yourself. Going into the hospital as a patient, and bringing gifts for others

is a wonderful thing.

You are a very special person.

Noreen

[ ] Remember me?

Hi group,

Just checking in to say hello. I know I don't post much any more,

but it's beginning to look like Dercum's and FM are " kissin' cousins "

more and more. So even though I don't have RA, I do have fibro and

Dercum's, so am part of the " family " still.

I miss seeing posts from a few people--Iris, Susie/Elf, and Alan.

Hope you guys are all doing well and not suffering too much.

If you've got time for a tiny little prayer, I'm going in for surgery

Monday morning at 9 AM. They're going to remove ALL the tumors in my

back, waist, both breasts, and one wrist. The surgery will be

observed by my family doc, dermatologist (who will take over

treatment)and orthopedic doc, who will do next surgery on my hips and

elbows. They won't let me stay as inpatient, but my surgeon said

that if he feels I need to be admitted, he will admit me. He said

surgery should take 2-3 hours. Poor Ron, he'll be exhausted by the

time it's over.

I said earlier I might be a Swiss cheese or wiffle ball for

Halloween. Ron said maybe a peanut wagon--I'll probably whistle in

the wind with all those holes! Going to take a load of teddy bears

and Beanie babies with me for the ER to have on hand for little ones

who come in and for the surg. ward too. Love to see those little

ones smile!

Peace and grace,

Judi

[Guest guest]

> Hi group,

>

> Just checking in to say hello. I know I don't post much any more,

> but it's beginning to look like Dercum's and FM are " kissin'

cousins "

> more and more. So even though I don't have RA, I do have fibro

and

> Dercum's, so am part of the " family " still.

>

> I miss seeing posts from a few people--Iris, Susie/Elf, and Alan.

> Hope you guys are all doing well and not suffering too much.

>

> If you've got time for a tiny little prayer, I'm going in for

surgery

> Monday morning at 9 AM. They're going to remove ALL the tumors in

my

> back, waist, both breasts, and one wrist. The surgery will be

> observed by my family doc, dermatologist (who will take over

> treatment)and orthopedic doc, who will do next surgery on my hips

and

> elbows. They won't let me stay as inpatient, but my surgeon said

> that if he feels I need to be admitted, he will admit me. He said

> surgery should take 2-3 hours. Poor Ron, he'll be exhausted by

the

> time it's over.

>

> I said earlier I might be a Swiss cheese or wiffle ball for

> Halloween. Ron said maybe a peanut wagon--I'll probably whistle

in

> the wind with all those holes! Going to take a load of teddy

bears

> and Beanie babies with me for the ER to have on hand for little

ones

> who come in and for the surg. ward too. Love to see those little

> ones smile!

>

> Peace and grace,

> Judi My prayer's are with you Judi. It blow's me away how they

won't let you stay as an inpatient.Your a special soul.May be now

your family can have some peace.Gentleness,Boo.

[Guest guest]

Judi,

My prayers are on their way.

mormar46 <mormar46@...> wrote:

Hi group,

Just checking in to say hello. I know I don't post much any more,

but it's beginning to look like Dercum's and FM are " kissin' cousins "

more and more. So even though I don't have RA, I do have fibro and

Dercum's, so am part of the " family " still.

I miss seeing posts from a few people--Iris, Susie/Elf, and Alan.

Hope you guys are all doing well and not suffering too much.

If you've got time for a tiny little prayer, I'm going in for surgery

Monday morning at 9 AM. They're going to remove ALL the tumors in my

back, waist, both breasts, and one wrist. The surgery will be

observed by my family doc, dermatologist (who will take over

treatment)and orthopedic doc, who will do next surgery on my hips and

elbows. They won't let me stay as inpatient, but my surgeon said

that if he feels I need to be admitted, he will admit me. He said

surgery should take 2-3 hours. Poor Ron, he'll be exhausted by the

time it's over.

I said earlier I might be a Swiss cheese or wiffle ball for

Halloween. Ron said maybe a peanut wagon--I'll probably whistle in

the wind with all those holes! Going to take a load of teddy bears

and Beanie babies with me for the ER to have on hand for little ones

who come in and for the surg. ward too. Love to see those little

ones smile!

Peace and grace,

Judi

[Guest guest]

In a message dated 9/25/2005 10:14:24 A.M. Eastern Daylight Time,

big_gee_64@... writes:

My hands are stiff and I cannot

move them in the mornings upon waking, nor can I fully open and

close my hands. Cramping arms, my white count is creeping up it is

now at 12.4 which scares me, my eosinophils are 13-15 isn't that 3

times what they should be? I went for my 1 year post bmt check up

on thursday and got rushed out the door! I could SCREAM!!!

Dear Gloria, I have not had a transplant, but I can tell you that I have

cramping hands and feet in the mornings also. I keep Tonic Water next to my bed

at all times, since the quinine in it helps control this problem.

Also, my last WBC was 9,000 which is high for me, but it was up to 11,000

last year and I was still in remission! So, although you are on the high side,

don't get too scared. Of course, our situations are very different; I commend

you for having the transplant. That must have taken a lot of courage.

So, don't despair! Your HGB and Platelet count is great! - Lynne A.

[Guest guest]

At 02:13 PM 9/25/05 +0000, you wrote:

>I finally found everyone at this site! Don't know if you all

>remember me? I had a bone marrow transplant this time last year on

>September 30th, 2004. I've been doing really very well and just

>encountered my first set back at the end of July and it's

>continuing. Hope maybe someone can give me some feedback on this.

Hi Gloria,

Maybe you already have.....but I would ask your questions, as they pertain

mainly to being post BMT, on BMT-Talk where people have much more

experience with this. I can't tell you how to get to this group.....you

might already know or someone can give you that information.

A friend of mine who had a BMT told me that afterwards she realized that

she no longer had CML but what she then had was GVH and other post-BMT

issues.....so this other group might be a lot more helpful to you.

Best wishes,

C.

[Guest guest]

Hi Glorie - I think I remember you, but not with this email address; didn't

you used to have a different one? In any case, glad to see your post and

know that you're doing relatively well a year out from transplant.

I'm afraid I'm not expert on the many and various complications

post-transplant, nor are many of us on the various CML lists. You'd

probably do better checking in at ACOR's " BMT-Talk, " one of the oldest

cancer listservs in the country and still one of the best. They have a

wealth of knowledge there and I'm sure they'll be able to help you.

Best of luck to you.

R

> Date: Sun, 25 Sep 2005 14:13:09 -0000

> From: " Gloria " <big_gee_64@...>

> Subject: Remember Me?

>

> I finally found everyone at this site! Don't know if you all

> remember me? I had a bone marrow transplant this time last year on

> September 30th, 2004. I've been doing really very well and just

> encountered my first set back at the end of July and it's

> continuing. Hope maybe someone can give me some feedback on this.

> My oncs started tapering me off Prograf 0n May 18th. The taper

> started out slow, I went from taking (2) 1 mg Prograf every day

> since I'd gotten home from Transplant in October (so that's 8 months

> on this dose) and was first tapered down to (1) 1 mg one day and

> then (2) 1 mg the next. Alternating doses. This drop lasted for 13

> days then when I went to clinic on May 31st, I was dropped again to

> (1) mg everyday.

> Looking back at my notes, I slipped on this...because I don't think

> that 13 days was enough time for my body to regulate this lower dose.

> I stayed on this dose for 49 days and then on July 20th, I was

> tapered down again to (1) 1 mg every other day. I started getting

> sick around July 23rd, 3 days later and was put on 1000 mg of ceftin

> a day.

> By August 3rd, my left ear was causing me problems, By August 5th at

> midnight my lower abdomen and stomach had swollen so terribly that I

> called the bmt clinic at Karmanos and went in that following Monday.

> Well they ruled out venous occlusive disease. My liver panel is

> great (bilirubin is 0.3, ALT (GPT) is 31, AST (GOT) is 42, creatine

> is 0.8, and urea nitrogen (BUN) is 14. They did however find that

> I'm spilling protein into my urine on a small scale. What concerns

> me most is for the past month, I've been retaining 8-10 pounds of

> fluid that only is relieved by aldactone (non potassium depleting

> diuretic). I have fluid behind my eardrums which my ct scan now

> shows opacity in the mastoid area. My hands are stiff and I cannot

> move them in the mornings upon waking, nor can I fully open and

> close my hands. Cramping arms, my white count is creeping up it is

> now at 12.4 which scares me, my eosinophils are 13-15 isn't that 3

> times what they should be? I went for my 1 year post bmt check up

> on thursday and got rushed out the door! I could SCREAM!!!

> When I saw the chief of blood and stem cell at karmanos he asked me

> who changed my doses of Prograf? Oh My God...He's asking me WHO?

> Why the hell doesn't he know?...It's terrible to be this far out of

> transplant and to feel this insecure. I feel like they are letting

> me slip through the cracks here. By the way, although my wbc are

> elevated, my rbc's are 4.26 and my hemoglobin is 13.2, platelets

> are 331. Are elevated wbc's an indicator that somethings going in

> reverse?

>

> HELP!!!...Love Gloria

[Guest guest]

I remember you Gloria, I saw that you had signed Jenn's guest book. I was

wondering how you were doing? I'm sorry about your setback. I'll start praying

for you. It must be so hard to endure after all the suffering you've gone

through so far. Every time I read about a BMT I am more convienced that I don't

want one no matter what! I guess that's easy to say when you are at zero. I have

no information to offer you other than prayers and I know you will appreciate

them. Keep me updated with whatever you find out so I'll know how to pray for

you. God bless! Moe in VT.

Gloria <big_gee_64@...> wrote:I finally found everyone at this site!

Don't know if you all

remember me? I had a bone marrow transplant this time last year on

September 30th, 2004. I've been doing really very well and just

encountered my first set back at the end of July and it's

continuing. Hope maybe someone can give me some feedback on this.

My oncs started tapering me off Prograf 0n May 18th. The taper

started out slow, I went from taking (2) 1 mg Prograf every day

since I'd gotten home from Transplant in October (so that's 8 months

on this dose) and was first tapered down to (1) 1 mg one day and

then (2) 1 mg the next. Alternating doses. This drop lasted for 13

days then when I went to clinic on May 31st, I was dropped again to

(1) mg everyday.

Looking back at my notes, I slipped on this...because I don't think

that 13 days was enough time for my body to regulate this lower dose.

I stayed on this dose for 49 days and then on July 20th, I was

tapered down again to (1) 1 mg every other day. I started getting

sick around July 23rd, 3 days later and was put on 1000 mg of ceftin

a day.

By August 3rd, my left ear was causing me problems, By August 5th at

midnight my lower abdomen and stomach had swollen so terribly that I

called the bmt clinic at Karmanos and went in that following Monday.

Well they ruled out venous occlusive disease. My liver panel is

great (bilirubin is 0.3, ALT (GPT) is 31, AST (GOT) is 42, creatine

is 0.8, and urea nitrogen (BUN) is 14. They did however find that

I'm spilling protein into my urine on a small scale. What concerns

me most is for the past month, I've been retaining 8-10 pounds of

fluid that only is relieved by aldactone (non potassium depleting

diuretic). I have fluid behind my eardrums which my ct scan now

shows opacity in the mastoid area. My hands are stiff and I cannot

move them in the mornings upon waking, nor can I fully open and

close my hands. Cramping arms, my white count is creeping up it is

now at 12.4 which scares me, my eosinophils are 13-15 isn't that 3

times what they should be? I went for my 1 year post bmt check up

on thursday and got rushed out the door! I could SCREAM!!!

When I saw the chief of blood and stem cell at karmanos he asked me

who changed my doses of Prograf? Oh My God...He's asking me WHO?

Why the hell doesn't he know?...It's terrible to be this far out of

transplant and to feel this insecure. I feel like they are letting

me slip through the cracks here. By the way, although my wbc are

elevated, my rbc's are 4.26 and my hemoglobin is 13.2, platelets

are 331. Are elevated wbc's an indicator that somethings going in

reverse?

HELP!!!...Love Gloria