Many Thanks

[Guest guest]

I just wanted to thank all of you for your help regarding my sons behavior

issues. It really helps to have the support of others knowing what I am

going through.

Things are really crazy so I don't have much time to update but the

behaviorist was here this weekend and we are tightening down on his behavior

plan.

Many thanks and God Bless.

[Guest guest]

In a message dated 6/6/2003 11:03:19 AM Pacific Daylight Time,

carol@... writes:

> I cannot believe how much my life has changed - this treatment has truly

> given me my life back

>

> Congratulations on feeling better. I always love those stories the best. It

> is a good thing to be on this side of the wall, huh. It gets better and

> better, I promise :-D

>

Ann Pritchard

" Deep in the center of our beings

is an infinite wealth of love "

<A

HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\

</A> < latest published work.

[Guest guest]

I am sitting here with tears streaming down my face I am so touched by

the responses. First of, I want you all to know that I emailed Zavie

and told him that I know by reading his posts over the years that he

didn't mean to upset anyone. But, maybe it is good that that thread

upset me like it did or I may not have written and experienced the

outpouring of caring I have. There are some amazing people here. I

am planning to go on and read the caringbridge sites you all have

directed me to and I plan to start one.

I do have a question that maybe someone can help me with. All along I

have felt very comfortable with my doctor and transplant center, but

last night I stumbled on some statistics that made me wonder. How did

you who have been through this choose a center? Could it be my mind

messing with me because I am so emotional already? Any help would be

appreciated. By the way, I am in the Pittsburgh area and currently go

to The Western Pennsylvania Hospital (West Penn).

Thank you all so much,

Holly

[Guest guest]

Hi Holly,

You can start by researching center at the National Marrow Donor

Program website:

http://www.marrow.org/ABOUT/NMDP_Network/Transplant_Centers/

US_NMDP_Transplant_Centers/tc_list_by_state.pl

BMT info net also provides some resources:

http://www.bmtinfonet.org/centers/index.cfm

We used our insurance company caseworker to research centers. (she

did the research for us). The center that does the most transplants

in the US is Fred Hutchinson in Seattle.

http://www.fhcrc.org/patient/treatment/process/

When researching the center, you want to ask how many patients like

you (with your disease/phase) have they transplanted in the last few

years? How many survived? What are your housing resources at this

center? Transportation to the clinic/ hospital? Feel free to email me

privately again if you want.

Barb

[Guest guest]

Barb,

thank you so much for all you support and all the info you have

passed my way. I am in the process of sorting it all out and I

started reading your Caring Bridge site last night. I definately

plan to start one and will let you know when I do.

Researching centers is not as easy as I thougth it would be. First

off, My insurance won't cover anything out of state, so that takes

all the big guns out of the running. The statistics I could find

online weren't very helpful because most centers, it seems, haven't

been doing many transplants for CML because of all the wonderful new

drugs. I do like my current doc and feel comfortable with him, I

guess just because of the magnitude of the situation I feel like I

need to look around.

I will write soon. Thanks again.

Holly

>

> Hi Holly,

> You can start by researching center at the National Marrow Donor

> Program website:

> http://www.marrow.org/ABOUT/NMDP_Network/Transplant_Centers/

> US_NMDP_Transplant_Centers/tc_list_by_state.pl

>

> BMT info net also provides some resources:

> http://www.bmtinfonet.org/centers/index.cfm

>

> We used our insurance company caseworker to research centers.

(she

> did the research for us). The center that does the most

transplants

> in the US is Fred Hutchinson in Seattle.

> http://www.fhcrc.org/patient/treatment/process/

> When researching the center, you want to ask how many patients

like

> you (with your disease/phase) have they transplanted in the last

few

> years? How many survived? What are your housing resources at this

> center? Transportation to the clinic/ hospital? Feel free to email

me

> privately again if you want.

>

> Barb

>

[Guest guest]

Holly

For me and mind you this was almost 7 years ago. I looked at the statistics

for the different hospitals that did BMT's.

I had all my testing done at Moffitt here in Tampa and backed out at the

last minute since during that time I was researching the outcome of the

Gleevec trials. (Obviously I decided to wait for Gleevec to be approved) but

had I moved forward I would have went to MD in Texas.

Even though all the testing was being done at Moffitt, I was not very

comfortable AT THAT TIME with their ability.

I love my Oncologist and he is still my primary Oncologist to this day. He

was affiliated with Moffitt then also but would not have been the BMT Doctor

although I am sure he would have participated in whatever happened.

Hopefully someone else here in the group will be able to better direct you

but I thought I would let you know that your concerns about which facility

to use are very valid and they should be.

As a matter fact I remember that I had to be assigned a special care

coordinator through my insurance carrier at the time.

They had to get an approval for the BMT as the insurance companies put a lot

of money out for something like this.

Once it was approved she called me and said " you know if you want you could

use another hospital in another state if you like, maybe MD in

Texas " She also told me that the insurance company's would rather it be done

at a hospital that had better outcomes because they didn't want to spend all

that money and the transplant not be successful.

Hope that helps!

ez

[Guest guest]

Thanks . I talked to my insurance carrier today and was told

that they would only pay for a procedure to be done out of state if

no one in the state could do it. So much for that idea, which I was

strongly considering.

What it seems to come down to is that I need to choose between West

Penn, where I have been going for 7 years now and know everyone and

have a good relationship with everyone, or choose to go to

University of Pittsburgh Med Center (Hillman Cancer Center), which I

have heard wonderful things about. I am not really convinced that I

need to go elsewhere, nothing happened to make me feel badly toward

West Penn, I just want to make sure I go to the right place.

Unfortunately, no one will give you an actual opinion on that. The

insurance company will only say they will cover either place. I

guess it's too much of a liability for them to make a

recommendation. So, I went on the NMDP website and compared stats

for the 2, but there isn't much available, though UPMC's did look a

bit better. But the stats there didn't match up with what my onc

gave me, so where is the difference coming from? I am just so

confused and feel like my head is spinning and that any moment it is

about to pop off. Can't wait until this weekend-Saturday we are

getting a baby and getting a room in the city, going out to dinner

and relaxing. And we made a deal-no mentioning cancer or

transplants or any of it! Which makes me wonder--is it a bad idea

to have just a few glasses of wine if my counts are all a little

low??

So, anyway, does anyone here know anything about the Pittsburgh area

centers?? If so PLEASE help me before I rip my hair out before the

chemo has a chance to get to it!

Sorry to ramble. Wow, I go from never posting to never shutting

up. If anyone can help I would really appreciate. If you can't

help with my questions, thanks for reading.

Holly

>

> Holly

>

> For me and mind you this was almost 7 years ago. I looked at the

statistics

> for the different hospitals that did BMT's.

>

> I had all my testing done at Moffitt here in Tampa and backed out

at the

> last minute since during that time I was researching the outcome

of the

> Gleevec trials. (Obviously I decided to wait for Gleevec to be

approved) but

> had I moved forward I would have went to MD in Texas.

>

> Even though all the testing was being done at Moffitt, I was not

very

> comfortable AT THAT TIME with their ability.

>

> I love my Oncologist and he is still my primary Oncologist to this

day. He

> was affiliated with Moffitt then also but would not have been the

BMT Doctor

> although I am sure he would have participated in whatever

happened.

>

> Hopefully someone else here in the group will be able to better

direct you

> but I thought I would let you know that your concerns about which

facility

> to use are very valid and they should be.

>

> As a matter fact I remember that I had to be assigned a special

care

> coordinator through my insurance carrier at the time.

>

> They had to get an approval for the BMT as the insurance companies

put a lot

> of money out for something like this.

>

> Once it was approved she called me and said " you know if you want

you could

> use another hospital in another state if you like, maybe MD

in

> Texas " She also told me that the insurance company's would rather

it be done

> at a hospital that had better outcomes because they didn't want to

spend all

> that money and the transplant not be successful.

>

> Hope that helps!

>

>

>

>

>

>

>

>

>

> ez

>

>

>

>

>

>

[Guest guest]

Thankfully, that symptom has passed for me, but during the early days

before I even realized I had PA I had terrible problems with it for

about 18 months. At the first sign of drowsiness, I would pull over

in a parking lot or off road, lock my doors, lay my head back against

the headrest and just go ahead a doze off. I would only sleep about

5-15 minutes, then I would be fine for another hour or two. I was

getting plenty of sleep at night, but would just be overwhelmed with

waves of sleepiness especially when driving. It passed for some

reason and hasn't happened for a long time. I've heard of others

having it too.

regards,

sherry z

[Guest guest]

This has all been really interesting because, as I look back on it now, before I

even knew for sure that I had a systemic inflammatory disease (my physical

therapist just " thought " it might be my problem) I had a terrible time driving.

Got so incredibly sleepy that I could not stay awake. Now I know why . . . . .

.. it went away, also.

Joanna Hoelscher

630-833-7361

[Guest guest]

As a new member I am finding that I can relate to several of the

topics under discussion. I had no idea that the feeling of being

tired could be related to PA. I have had many situations where I

have had an overwhelming feeling of needing to go to sleep and have

become anxious driving home from work.

I have not been to a rheumy as yet as I was diagnosed with severe PA

by the orthopaedic surgeon who did my operation for compressed nerves

in my lower spine. I now have rods and screws from S1 to above L5.

He has made appointments for me to see a consulting physician on the

13th September who will be managing my condition. Apparently he will

co-ordinate the rheumy, gastro, and the haematoligist to manage my

condition. Whilst I was in hospital they came up with a liver

problem which has to be checked out before I can begin any

treatment. Has anybody else come up with this problem.

I have been treated for arthritis for the past 10 years by my local

doctor. I don't believe he ever considered the pain was as severe as

I said it was. I was mugged in our local shopping centre in November

last year and the pain in my back became unbearable. This was when

they found out the I had a compressed nerve in l4/l5. I tried all

the physio, acupunture to try and get some relief. Eventually I was

referred to the Surgeon.

Are all doctors so emphatic about the food we eat in relation to PA?

My diet has been reduced to only fresh fruit and vegetables. Small

amounts of grass fed meat and milk.

My sister also has PA. She has it in the knee and hand. I had no

idea that crohns, colitis, schogrens, is all part of this immune

disease. This has been rather distressing as my daughters already

have these problems and I would hate to think this is what they have

to look forward to in the future.

Will speak again soon

Maree

[Guest guest]

Here's something I just found on an interesting website (patients.uptodate.com,

I think it was.) I have had testing for HLA B27.

HLA typing provides important predictive information. Univariate analysis

reveals that patients carrying the HLA antigens B27, B39, or DQw3 are at a

higher risk for progression of clinical damage; furthermore, these antigens are

stronger prognostic factors than the clinical variables [8]. In comparison,

HLA-DR7 appears to be " protective. " The best multivariate model identified the

HLA- B27, when DR7 is present, and DQw3, when DR7 is not present, as predicting

disease progression; HLA-B39 was associated with progression in early disease

[8]. HLA-B22 is protective when all HLA antigens are added to the model [9].

Testing for these potentially informative HLA types sometimes provides support

for use of DMARDs or biologic agents, but is not routinely performed in our

practice.

Joanna Hoelscher

630-833-7361