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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

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Old Tue Aug 7, 2012, 08:49 AM
scully scully is offline
Join Date: Sep 2010
Location: Ormond Beach, Fl
Posts: 15
Anyone had ATG at Moffitt?

I will be starting ATG at Moffitt on 8/20. Don't know exactly what to expect.
I am a 45yo male diagnosed MDS in 5/2010. Platlets run consistantly around 16, Whites around 1.5 and HGB about 8.5 I activly work and travel alot for work, mostly driving about 800 miles per week. When not driving for work I can acomplish alot from a laptop.

A couple questions.

When can I realisticly plan on working again?
During treatment will I be able to use my laptop?
I am admitting on a Monday, when should I plan on going home?
What should I bring to Moffitt? (can I bring my own bed cloths or will I have to use hospital attire?)

Thanks for any direction.

Scully, Ormond Beach Fl
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Old Wed Aug 8, 2012, 08:17 AM
milliken2 milliken2 is offline
Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Moffit and its Regs

I am not sure what you can bring to Moffitt - but re your laptop - if anyone else has used it - you will probably have to clean it with an antibacterial wipe. You don't want any outside germs in with you.
I am not sure how long you will have to stay or what to expect, but I do know that when we were at Moffitt, and even before our appointmrent - they were very helpful in answering questions. Give the BMT clinic a call, and ask them so that you can be sure. You don't want to hurt your chances in any way. Good Luck To You

Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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Old Wed Aug 8, 2012, 10:31 AM
scully scully is offline
Join Date: Sep 2010
Location: Ormond Beach, Fl
Posts: 15
Thank you so much and good luck to your husband.
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Old Wed Aug 8, 2012, 07:55 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 715
Hi Scully,

Everyone is different, but I can share with you my experience. I brought my laptop with me (along with a cable lock). It was nice to have it to troll the forum for side effects that I was experiencing as well as to get more knowledgable about bone marrow failure in general.

They gave me some pretty strong narcotics just before administering the ATG which made me pretty loopy for a few hours a day. Also, my platelets and RBCs were pretty low and that effected my mental agility. However, by the third day of ATG, I was feeling pretty good most of the time. My nurse told me it was important to walk everyday (with a mask), so that became part of my routine. I was ready to go home by day 5 or 7, but my doctor kept me for 10 days. He was worried about serum sickness, which I never got severely. I felt [relatively] good once I got home and could function at a pretty normal level - better than before ATG.

As for what to bring... I brought comfortable clothes (sweatpants, short sleeve shirts, a fleece jacket, and lots of changes of pj's as I had terrible night sweats!) Don't forget slippers for your walking adventures. Also, it's nice to have your own pillow from home.

Again, everyone is different. If you get an infection in the hospital, you could be stuck there for a whole lot longer! Also some people have severe reactions to cyclosporine, which could delay your release.

Hope it is not too rough for you!
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Thu Aug 9, 2012, 07:01 PM
ssdavi71416 ssdavi71416 is offline
Join Date: Mar 2012
Location: Atlanta Georgia
Posts: 105

I wish you well in your treatment. Here is my experience with ATG at Emory in Atlanta.

The first day of treatment (4/05/2012)lasted about 14 hours due to slowing down the IV due to some shaking. I understand this is fairly common. The next three days went well and took about 10 hours hooked to the IV each day. I entered the hospital on Thursday and was discharged on Monday.
I was able to use the laptop some during treatment, but you will have lots of administrative visitors. They also will give you Benadryl that of course makes you sleepy.

The main issue that I currently have is that my neutrophiles are <1. The Dr does not want me around other people so I would need to work out of the house. I had some rough weeks where I didn't feel up to working...even from the house. Not sure how common they are but I had headaches that put me in bed. I hope this information helps.

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Old Fri Aug 10, 2012, 08:44 AM
scully scully is offline
Join Date: Sep 2010
Location: Ormond Beach, Fl
Posts: 15
Thanks everyone for your input it is very helpful. I haven't even taken off work yet and I am already anxious to get back. The biggest fear is not so much what lies ahead as far as treatment, recovery and side effects but the change in normal routine.

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