LisaBulman

I'm enrolling in two studies! Updated again!

20 posts in this topic

I have had a very busy day. Firts I went to the kids school to set up a fundraiser where the kids donate pennies for patients with leukemia. This took about 2 hrs this morning. Then I drove into Boston to my rheumatology appointment. While I was there one of the research coordinators came in to see me. She asked me if I would like to participate in a study next Tuesday. Basically I will have to donate about 10 vials of blood. That's it. So I said ok. They are looking at the blood of patients with scleroderma, limited and diffuse, lupus and healthy people too. They are studying the activation of receptors on white blood cells and vascular disease in patients with immune and autoimmune deseases. I'll be compensated a whopping $20! That will cover my gas and parking. smile.gif

The other study is Pulmonary Fibrosis with Systemic Sclerosis. It is a time commitment and I don't have all of the info yet but my dr seemed to think I would be great for it. Of course, it is a placebo controlled study, so I'll probably get the placebo (I've got it in every study I have done). The study will consist of 7 pft's through out the trial (no big deal), but I will need to report the hospital and I will have an infusion of blood with IL-13. After my infusion I need to go to admitting, be admitted to the hospital for the night for observation and then in the morning report back to the infusion center and then I can leave. This will happen three times. The jist of the study is this: There is a certain drug that researchers have injected mice with which causes pulmonary fibrosis. The have injected mice with the IL-13, then the other drug. When this has been done the mice did not get pulmonary fibrosis. When they injected the mice first they developed pulmonary fibrosis so they injected them with the IL-13 and their fibrosis disappeared! Yes, disappeared! This is the first glimmer of hope I have had in something getting cured or significantly better. The chemo held me off but it is obviously not a long term solution. My dr is very positive and thinks I will do very well on this, if I get the drug and not the placebo.

Now I am just waiting for my paperwork so I can read it through and officially sign my name to it. smile.gif

Wish me luck!

Hugs,
Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Lisa- just want to say thanks for volunteering for the studies - even if you did get the placebo you will ne helping progress knowledge for us all.

Lizzie

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I agree with Lizzie, Lisa. Those of you who are willing to take these steps may pave the way for something really great. My thanks and admiration for the risks you are willing to take.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hey Lisa

 

I wish you loads of luck and I agree, any study is valuable with rare diseases. I'll keep you in my thoughts in hopes of only good things to come from this for you during and after your trials!! Sure hope your doctor is right and you get the good stuff...not the placebo!


Sending good wishes your way!

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I am so glad you were able to do the studies. I also agreed to take part in two studies my new rheumatologist at Johns Hopkins is doing. It only involves the blood work, but when she asked me to, I happily agreed. I told her "How can you study this disease and come up with help for us if you don't have the necessary participants?"I also participated in the DNA registry at University of Texas. That one also required the drawing of about 10 tubes of blood. Let's all hope that one day they will find a cure or at least more help for us!!!!


Peace :)

Barbara aka relicmom1

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Thank you for blazing new trails for us, Lisa! And hey, maybe this will be your lucky trial. In fact, statistically speaking, you are due for some good luck and for getting something other than placebo. It will be a huge kick if it works, eh? And even if it doesn't, you will have still done yet another wonderfully good deed for tackling scleroderma!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Good luck on all the trials Lisa. I hope good things come from them!

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Hey Lisa!

 

Thanks for being our guinea pig :lol: You are doing important work lady so thank you , thank you and thank you again. I wish there were studies like that in my area, I'd jump in with both feet.

 

Sounds very promising - exciting news!

 

Take Care,

Love, Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Superwoman, oh I mean Lisa,

 

Thanks for your willingness to participate especially since you have two young daughters who are active and one who has doctor visits of her own, you have your other activities and this study will require you to stay overnight! The other...a piece of cake....we're used to being human pin cushions.

 

with admiration,

emmie

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Thanks so much for helping out in the study. All of us need more people like you willing to take a chance. Best wishes to you!


Take care and stay warm,

 

Michelle

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I went on Tuesday, bright and early, and had 10 tubes of blood drawn. First study completed!

 

I received the information about the pulmonary fibrosis study. It will last a total of 31 weeks. It will be very time consuming but I am going to do it. I should have my schedule with in the next week or so. First I will have my initial visit to see if I am eligible (I have no doubt that I will be). Next I will need to go in for more labs, a bronchoscopy and a skin biopsy. Within four days of the broch I will have my first of three infusions. For each infusion I will be admitted to the hospital and must stay at least 24 hours after my infusion. The following day I will need to go back for blood draws. Over the course of the study they will take about 3 1/2 cups of blood! Yikes!! I'll keep evry one posted...

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Lisa,

I join everyone else in saying THANKS! I look forward to your updates. I'll keep my fingers crossed that for once, you don't get the placebo.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I receieved a call on Monday asking if I could go into Boston early to get things rolling. I arrived at the hospital at 11 and met with the nurse/research coordinator. We did the usual, filled out forms and we went over my whole medical history. After going through it all, it seems like I have been through the ringer but I know there will be more to come! Back in '04 I had a cardiac ablation and she said I might be disqualified from the study! UUGGHH, she called the company immediately and they agreed I would be ok. YEAH!! She took my vitals, did and ekg and I signed my life away.

 

Off to the lab I went to donate 7 more tubes of blood and a few other items. :blink:

 

Down to the pulmonary lab for my pft and 6 min walk. There was a slight change in pft since January so it's a good thing I joined this study. My DLCO was down to 44%.

 

I'lll be heading back in at the crack of dawn on Saturday for my echo. I am tentatively scheduled for my bronchoscopy, skin biopsy and pft for the 14th of April and my infusion will be either that Wednesday or Thursday. I am so excited to get this all done!!!!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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