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Bird Lady

First Cyclophosphamide Treatment.

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Hello All -- Birdman went last Friday for his port install (looks like two door bells in his chest!!!) and first treatment and everything went real well. We were both apprehensive not knowing what to expect. But he did great. He took the nausea meds until Tuesday evening and didn't get sick at all. He's very tired but glad to be home. He goes back the end of the month for next treatment. Hope all of you are well.

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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Hi,

 

Thanks for the update. It is good to hear that all went well. Hopefully there is some improvement in his symptoms after a few treatments. Please do keep us posted.

 

Warm wishes,

Heidi

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Thanks for letting us know. I'm so glad that Birdman's first treatment was uneventful. Hopefully it stays that way for the remaining treatments. How many does he get?

 

Hugs to you both,


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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Good news on the cyclophosphamide treatment. Just a quick question -- I thought you were looking into the stem cell transpants? If so, then you need to consider how many dosages of cyclophosphamide you take as each dosage increases the risk that you may not be able to generate enough stem cells for when you need or decide to have a SCT. Also, I did not realize that each dosage increases your risk of Lymphoma and the like. I thought I just had to worry about infection while on the drug. Something else to also consider in your treatment options. Gidget

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Thank you for taking the time to update all of us here! I am so glad everything went well, hopefully the rest of the treatments will be the same!

 

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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I am glad Birdman handled his first treatment well and hope that the rest go as well. I am also glad you are keeping us posted for him and that you can find support here, too. Hugs to you.


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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Gidget We were hoping to get stem cell transplant but were randomized into the cytoxan arm in the SCOT study. Thanks for bringing up the point about so many treatments I am sending his DR at Duke an email right now to ask him. Although at our last visit the Dr did say that they were discussing changing the protocal for the SCOT study to add stem cell to the cytoxan arm if improvements were not seen in about three months. Thanks agian

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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Is Birdman having his treatments at Duke? I've had 6 cytoxan treatments at Duke. Dr. Shanahan tried to get me into the SCOT trial, but I needed large doses chemo to get my white blood cell count to drop so I was disqualified from the trial. :huh:

 

The 1st dose of Cytoxan is a low dose and then they keep increasing it until the white blood cell count drops. I had 4 treatments before mine dropped. The first 3 treatments weren't bad at all and I felt very little nausea. I was dizzy for a few days and had "chemo brain". The 4th and 5th doses were a doozy and I felt terrible. :wacko: All I can say is drink a lot of water to get the chemo out of your system as soon as possible.

 

Best of luck and if you want me to share anymore of my experiences with chemo, don't hesitate to ask.

 

April

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