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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Mon Feb 7, 2011, 11:39 AM
kleep kleep is offline
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Join Date: Feb 2011
Location: Grand Island, Ne
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Dad starting ATG tomorrow

New to this forum. My Dad was diagnosed 2 MD Anderson Nov 2010. He started Vidaza in Dec 2010 did 2 treatments. But as of today he has been in the hospital for 12days with extreme low numbers. As LOW as WC .5 Hemo 7.3 and Platelets 8,000
We have done 4 Platelet transfusions 2 IVIG's and 2 blood in the past 12 days so today made the decision to switch to ATG; starting tomorrow.
Today our numbers are WC 1.4 Hemo 8.0 and platelets 22,000 and we are thrilled.

Can anyone give me any input on their ATG experience? This is such a roller coaster ride and would likke some real life input and not just Doctor talk.

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Kari, Daughter of Kirk age 72, diagnosed MDS Nov 2010, 2 cycles of Vidaza
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Old Mon Feb 7, 2011, 04:58 PM
Lisa V Lisa V is offline
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Kari, if you use the "search" feature at the top of the page and enter "ATG" you will find lots of first-hand descriptions and discussions. Most of them will be for Aplastic Anemia, however.

ATG isn't used nearly so often for MDS unless it's of the hypocellular variety (most MDS is hyPERcellular), but there have been studies showing response in a small percentage of RA and RARS patients. Most of what I've read is several years old now, and the samplings were fairly small, such as this report:

http://www.nature.com/leu/journal/v1.../2403124a.html

What type of MDS does your Dad have? Have his doctors explained why they think this would be appropriate for him? It's possible there could have been new developments or new thinking on this.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #3  
Old Mon Feb 7, 2011, 11:48 PM
Ryan Jay Ryan Jay is offline
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Join Date: Aug 2010
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My ATG experience

I didn't have too many symptoms during the treatment but I was absolutely wiped out for about a month afterwards.

What do I mean by "wiped out?" I could barely walk, when I tried to sit up at a table I practically flopped down face first. Walking up stairs was something that I had to spend about 4 or 5 hours gearing myself up for because I had stiffness in my hip joints and knees.

Really weird dreams too. And I was sleeping 14 to 18 hours a day.

Then about at the six week mark, I started to feel somewhat normal again.

As for the day of:

Does your dad have his PICC in place yet?

Once they talk to your dad in the morning and get him ready for the two giant bottles of "birch beer" (That's what I called them) They'll hit him with the pre-meds. Those knocked me out from about 10AM until about 4. You may want to schedule family visits for early morning or later on in the evening.

Try to get him out to walk around a little after dinner/treatment and before the evening meds. You should have the ok if you wear a mask. That helped me get the cobwebs out. They may be a little stricter about this during cold and flu season.

I'll let you know if anything else comes to mind,

Ryan
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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Old Wed Feb 9, 2011, 10:26 PM
Greg H Greg H is offline
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Hey Kari!

I can't tell you much about ATG, but there are lots of folks here who have had it.

Like Lisa V, I'm curious about why the docs are recommending ATG. Immunosuppression in MDS is usually used with younger patients, those with hypocellular marrow, folks with Trisomy 8, and folks with HLA-DR15+.

Good luck to you and your Dad!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Thu Feb 10, 2011, 01:20 AM
kleep kleep is offline
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They choose to do ATG after 3 Doctors Dr Sekeers (Clevlenad Institute) Dr Borkathur (MD Anderson) and Dr Copur were stumped to what to do to get anything going. Dad as of yesterday has 0.4 Whitecount 28,000 Platelets and 7.3 Hemo. OH and basically ZERO on the neutrophils

In the past 15 days he has had 2 IVIG, 2 Blood transfusions and 5 Platelet

Following his first ATG treatment last night we say a sever reaction and a drop in all numbers cross the board.
thought we were in the clear today but now a 103+ fever, high Blood Pressure and extreme high heart rate. Same tonight.

I hope only for the best in the next couple of days and next 3 treatments.
Being an more advance age is such a disadvantge.
He also has a triple by-pass 2 years ago so the additional stress on his heart is an added difficulty.

Need some light at the end of this long dark tunnel
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Kari, Daughter of Kirk age 72, diagnosed MDS Nov 2010, 2 cycles of Vidaza
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  #6  
Old Wed Feb 16, 2011, 12:15 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
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Hang in there Kari!

Unfortunately, most of the treatments they give us make things worse before they get better.

Good luck to you and your Dad!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #7  
Old Mon Jun 1, 2015, 10:33 AM
CherylAnnC CherylAnnC is offline
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Join Date: Apr 2015
Location: Jupiter FL
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ATG

I was treated with ATG with miraculous results. Nothing else worked. I had a lot of bad reactions during treatment but the staff at Moffitt handled everything that came up and we got through the 5 day treatment. The treatment usually makes you worse before it gets better. I am one year out from my treatment and I have been transfusion free since the treatment. My counts aren't in the normal range but greatly improved. I still get monitored regularly by my local hematologist but I am very happy with the results. My platelets went from 15 to 100 and my hemoglobin stays around 10. I am still nutropenic so we have to watch when my white count falls but overall very good results.
I wish you all the best with treatment and my prayers are with you also.
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