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Update On Trip To Duke


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#1 GocartMoz

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Posted 02 December 2006 - 06:26 AM

Hi all:

I am back from my trip to Duke to be screened for the Scot Study. I must say it has been an exhausting trip. I feel like every test known to man was packed into the three days I was there, including blood tests, endoscopy, bronchospcopy, ct chest scans, chest xrays, skin tests, 6 minute walk tests, PFT, etc. etc. etc. It seems like every test I have already had over the past 7 months was packed into three days. It really was quite an exhaustive schedule. On the other hand, the Dr.'s and staff I met with were all wonderful. All the previous recommendations I had heard about Dr. Shanahan are all true. I found him to be a very fine and compassionate Dr. who surely knows his stuff. Even outside the Scot study, I would recommend him to anyone who wishes to consult with an expert in the field of Scleroderma. I was also very impressed with Dr. Sullivan, the surgeon overseeing the study. I have decided to definately get into a study, hopefully randomized into the stem cell transplant arm, if I qualify. The doctors have made it clear that with the progression of my disease I need to be aggressive. My skin score went from 29 to 35 in the last few months. I realize the skin tests are somewhat subjective, but there was also evidence from the testing that the disease has moved to the lungs. In any event, it is kind of out of my hands now as to whether I qualify for the study. I was told I would be receiving a call within the next few weeks. Hopefully, it will be good news. Of course, even if I made it passed this screening phase there are more tests to be done before I am in.

Thanks for all your support
Dave

#2 Shelley Ensz

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Posted 02 December 2006 - 10:08 AM

Hi Dave,

I'm excited to hear that things went so well with your appointment at Duke. It's too bad that your illness is aggressive enough to qualify for it (at least through the screening you've had so far) but terrific that it at least might open up some treatment options for you.

We'll be eager to see what happens. I suppose you'll need some heavy-duty distractions to keep your mind off of wondering when they will call and what they will say. We went through a similar thing when my husband was going through his initial evaluation for being listed for a lung transplant.
Warm Hugs,

Shelley Ensz
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#3 Heidi

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Posted 02 December 2006 - 10:10 AM

Hi Dave,

Wow! Your trip sounds exhausting. Sounds like the doctors were very thorough. I hope you qualify and are able to get into the stem cell arm of the study. Please do keep us posted!

Warm wishes,
Heidi

#4 Lori-Scleroderma Spouse

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Posted 03 December 2006 - 10:07 AM

HI Dave

Sorry to hear about your progression. But if you must deal with this dreaded disease, I have to say that Dr. S is the best. He tries very hard to make even the bad news not sound so bad. He tries to crack jokes all the time with my husband, who never seems to be in the mood for them. He gets very nervous when he has to go the dr. Hope things go well for you.
Lori
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#5 janey

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Posted 03 December 2006 - 12:07 PM

Dave,
Thanks for the update of your trip! Sounds like it was a good one although quite exhausting from all the tests. I think we all can tolerant all the poking and prodding if the doctor we're working with is caring and compassionate. So do you get copies of the test results? Good luck on getting selected.
Please let us know when you hear something.

Big Hugs,
Janey

#6 peanut

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Posted 03 December 2006 - 12:34 PM

Hope ya'all don't mind if I tanget for a sec, but how important is it that I get copies of all my tests? My doctors/rheumy don't give me copies of my tests. They just sum up the results.

peanut

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my HMO makes me wear a helmet...

#7 Sweet

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Posted 03 December 2006 - 12:49 PM

Oh Dave, I'm exhausted for you!

It sounds like they were very thorough, so for that you can be grateful. That sounds like so much to go through in 3 days! I'm really sorry to hear that the disease has progressed to your lungs. I am so glad though the doctors are taking this seriously, and taking the bull by the horns so to speak, and encouraging you to get aggressive with treatment.

You will be in my thoughts; please let us know how things play out.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 americanmike

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Posted 03 December 2006 - 03:46 PM

Dave--
I hope I'm not asking a stupid question because I've been absent from recent posts, but I remember you writing a while back that Northwestern was trying to get your insurance company to pay for a stem cell transplant, and that they wanted you to participate?

Is that still true or did something fall through with Northwestern? Or your insurance?

I'm just wondering why you would go through all those tests again. Ahgg!

Hope you get some major treatment going asap!

Michael in Florida

#9 GocartMoz

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Posted 03 December 2006 - 04:09 PM

Mike,

I went to Northwestern to discuss their protocol. Unlike Duke, however, they didn't plan a battery of tests on my visit. It was just to talk with the dr.'s. I gave Northwestern authorization to discuss payment for their program with my insurance company and the insurance company did approve payment for a stem cell transplant. I told my insurance company I wanted to check out Duke's protocol as well and they told me they would pay for either as both facilities are on United Healthcare's list of "centers of excellence." At Duke, I actually went through phase I of the screening. I liked both facilities and all of the physicians I have seen at both. Once I hear back from Duke, I will have to make my decision. I know for sure I want to be involved in a study, preferably the stem cell transplant arm. Whether I will be accepted into either study is still up in the air.

Dave

#10 emmie

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Posted 03 December 2006 - 07:21 PM

Dave.

I'm really happy you've got both of these visits under your belt now. Hope you're getting rested from all the activity. Let us know the next step. And be sure to be taking good care of yourself! Ya gotta go into this as strong as possible!!!

xoxo emmie

#11 LisaBulman

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Posted 04 December 2006 - 03:35 AM

Hi Dave,
Wow! You must be happy that the first part is over. Please keep us posted on what the results are and what you qualify for!

Wishing you the best...

Lisa
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#12 Gidget

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Posted 04 December 2006 - 05:50 AM

Dave,
Sounds like you had a very productive trip to Duke! When do you think you will hear from them as far as if you qualify? Are you also going back to Northwestern? I am off to Maine on Wed. to talk about the stem cell transplant and will be at Northwestern and Johns Hopkins in January. Then it is decision time. Have fun. Regards, Gidget

#13 adensmore

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Posted 05 December 2006 - 04:50 AM

Dave,

I go to Duke too and see Dr. Shanahan. I absolutely LOVE him. He is truly a wonderful man, with a kind heart and you can tell that he wants to make all his patients better. I'm not in the SCOT study, but I am one of his 25, or so, patients taking chemo (Cytoxan) once a month over the next year. My skin score got up to 39 and my lungs were beginning to be affected, so we are going to give the Ctyoxan a try.

There is no doubt that you are in the best hands possible at Duke. When you see Dr. Shanahan again, tell him April said hello :D

#14 mimi

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Posted 07 December 2006 - 06:09 AM

Dave
What made you decide to do the SCOT trial over the Northwestern one.

I am ready to be randomized for the SCOT trial next week with treatment starting Dec. 18th, but am seeing all the doctors at Northwestern next week for tests and talks on their trial. I am VERY fearful of the radiation in the SCOT trial. My MD (who is participating in SCOT trial here in Milwaukee) is trying to convince me to stick with the SCOT trial, but Dr. Burt (at Northwestern) has some pretty compelling evidence AGAINST the full body radiation part of the SCOT trial. I went to a symposium in Chicago last weekend and I am absolutely thinking of NOT doing the SCOT trial and qualifying for the Northwestern trial.
I spent the entire day at my local hospital yesterday having tests and will repeat them all at Northwestern next week.
My skin score is only 18, but my DLCO has dropped considerably. I am asymptomatic and my PFT's from yesterday DID improve SLIGHTLY over the last 3 months.
I have been in the screening phase for the SCOT trial since June--lots of little glitches came up, and I had to repeat ALL the tests. This has given me WAY too much time to mull all of this over.
I am VERY confused at this point and am just awaiting to talk to the Northwestern MD's next week and see what they have to say.

Dave, let me know what factors are affecting your decision-please!
Thanks
Mimi

#15 cat

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Posted 10 December 2006 - 02:31 AM

B) Dave,

I also go to Duke and see Dr. Shanahan. He is truly wonderful. I have emailed him on different occasions. He is always good to answer. Very helpful. I hope you qualify. Bless you! cat

#16 americanmike

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Posted 10 December 2006 - 03:48 PM

Hi Mimi--
I read your post about trying to decide Scot or NWU. I noticed that your doctor is trying to "convince" you to go with the Scot. The folks at NWU will try to convince you to go with their study.

It just bothers me a little that these trials recruit and have something to gain by your participation. I mean it seems like the Dr's ought to read the results, compare the data, anc come to an agreement about what is best for the patient.

The fact that NWU withdrew from the Scot trial is compelling. Also I've emailed a number of different doctors from around the world in Europe and Japan, and they all said go to see Dr. Burt he's the best in the world.

Just thought I'd relay those endorsement as you make your decision.

Michael in Florida

#17 GocartMoz

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Posted 13 December 2006 - 07:56 AM

Hello all,

Just thought I would let you know I made it through phase 1 of the screening. I am going back to Duke December 20th for Phase 2 testing and than I am done, and if all goes well I will be randomized. They say I should be able to begin treatment in January assuming no problems from the testing. Apparently, one issue involves my left hemi-diaphragm. Tests showed it is elevated and paralyzed. They said it is something they don't associate with Scleroderma so they thought it may be as a result of a cross-over disease, but blood tests ruled that out. They have scheduled an MRI to see if it has something to do with the phrenic nerve. I have absolutely no idea what this may be about, but I fear it may ultimately exclude me from the study if there is a problem. They havn't exactly said that so I chose to remain optimistic at this point. Has anyone dealt with a paralyzed hemidiapragm before? What causes such a thing?

Dave

#18 Sweet

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Posted 13 December 2006 - 08:34 AM

Hi Dave,

I can't say I've ever heard of that. I tried to do a search from ISN and didn't come up with anything. Janey is a lot better finding things than I am, so maybe she'll find something.

I'm excited for you and I hope there are no problems with you moving forward. You are in my thoughts!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#19 DBHYGRELL

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Posted 14 December 2006 - 01:16 PM

I am looking into Northwestern - at the Bone Marrow Transplant provided one of my sister's matches. I am hoping it is a go - but I want to get going right away because of my PFT's.

Maybe we should e-mail -because I think we will be doing stuff at the same time.

FYI- I did also read some problems about full body irradiation. Try researching it..

Whatever you decide, good luck,
Denelle

#20 Sweet

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Posted 14 December 2006 - 01:30 PM

Oh Denelle good you found this thread!

This is the one I was thinking about where I knew others were going through the same thing.

Good Luck!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)