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MDS Myelodysplastic syndromes

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Old Mon Aug 4, 2014, 09:12 PM
maggiemag maggiemag is offline
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Location: Cincinnati, OH - United States
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Question Arranging for Neupogen while on vacation

Hi everyone! I am going out of town in 3 weeks for about 10 days. I will ask my physician tomorrow when I see her, but I thought I would ask here first. I have weekly labs, and have needed Neupogen shot every Tues. Since it comes from a specialty pharmacy, I can't just go to the local CVS and give it to myself. I would need a cbc at a minimum. I can get a script for that and go to any lab, but a walk in clinic is not likely to have Neupogen stocked. Any ideas? I'm going to be in Seattle that Tues.; was seen there for a second opinion but 4 years ago. They weren't sure I could go back just for lab and a shot.
Thanks in advance, and hope everyone got good news today!
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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Old Tue Aug 5, 2014, 06:07 AM
Birgitta-A Birgitta-A is offline
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Neupogen

Hi Margaret,
You know I have been taking Neupogen during long periods since I had neutropenic fever the first time 2007. I give myself the shot - it is not difficult.

When I stay in my summer house I bring the shots with me in a special cold box and move them to the refrigerator where they stay until 30 min. before I take the shot.
kind regards
Birgitta-A
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Old Tue Aug 5, 2014, 10:57 AM
maggiemag maggiemag is offline
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Thanks, Birgitta. I'm an RN so giving the shot is not a problem. But I will be traveling by train for 48 hours then buses, so keeping it cold is a problem. I already have to drag a bi-pap machine plus my travel oxygen concentrator, so I'm trying to keep it simple!
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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Old Tue Aug 5, 2014, 01:52 PM
Birgitta-A Birgitta-A is offline
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Neupogen

OK Margaret I understand. Hope you can keep away from infected persons during your travel!
Kind regards
Birgitta-A
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Old Thu Aug 7, 2014, 09:56 AM
maggiemag maggiemag is offline
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Ok, now I have 2 possible solutions. They will see me at the Hutch in Seattle even though it's been over 4 years since I went for another opinion; do a CBC and give shots if needed. Also, another growth factor called Granix (Tbo Filgrastim) is stable for 5 days unrefrigerated, and could be obtained at the specialty pharmacy before I leave. Just thought I would share that in case anyone else has a similar issue.
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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