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  #26  
Old Tue Oct 1, 2013, 09:11 PM
DebS DebS is offline
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Initially he was only going to get Busulfan for the first four days. Then he is to get cytoxan for two. They decided against full body radiation. I was most worried about the cytoxan because of the catheter.

The doctor who decided to administer the ATG is the head of the whole BMT unit so I felt that it probably was a good idea. I was just confused about the whole thing. He explained it by saying that they wanted to kill off all of the cancer cells and he felt that they needed this to do it.
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  #27  
Old Tue Oct 1, 2013, 09:56 PM
Whizbang Whizbang is offline
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I believe I will be getting Cytoxan and ThioTEPA, but I'm also getting full TBI...

There are benefits and drawbacks to both I believe...

God Bless, and keep us informed... Glad to hear everything is going well so far...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #28  
Old Wed Oct 2, 2013, 12:40 AM
Heather8773 Heather8773 is offline
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Yes wiz my husbands schedule is simular.
ATG can be horse or rabbit I think horse is stronger. I think that people have more reactions from horse. (we learned this bc my husband had a round last feb) ATG specifically targets Tcells.
There are three types of transplant that I'm aware of.
PSC
BMT
And cord blood.
But at the end of the day they are all methods of replacing the current stem cells.
Hope this helps we're here for y'all!
God bless
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #29  
Old Wed Oct 2, 2013, 08:36 AM
susanML susanML is offline
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Schedule -

Quote:
Originally Posted by Whizbang View Post
This is what my schedule looks like:

-9 TBI (3 doses)
-8 TBI (3 doses)
-7 TBI (3 doses)
-6 TBI (2-3 doses)
-5 Chemo A
-4 Chemo A
-3 Chemo B / Rabbit ATG
-2 Chemo B / Rabbit ATG
-1 Rabbit ATG
+0 Transplant
+7 Neupogen

TBI - Total Body Irradiation
A & B are different types of chemo drugs
Thank you for writing your schedule - I am getting so nervous to get started and really want to know what to expect - thinking of you and sending my blessings
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #30  
Old Thu Oct 3, 2013, 07:17 PM
DebS DebS is offline
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Atg--omg!!!!

Well, the honeymoon period is definitely over. I went in to find Doug in good spirits. We walked the halls as usual and he was in good spirits. Then they started the IV! The nurse said that they were doing premeds before the ATG. He had a huge dose of Benadryl. We learned from transfusions that he needs very little to make him "loopy." But this dose would have taken down an elephant! He started shaking in his arms and legs, felt very nauseous and his respiration was tanking! It was the first really scary moment we have had in the hospital. I guess you think you are prepared for things, but when they hit, you certainly are not. Next came Demerol and some other anti nausea stuff. He finally settled down after the nurse helped him with deep breathing. I tried to help also, but wearing the mask I was hyperventilating myself and ready to pass out! Nice to know that I will be so helpful:

Anyway, he did calm down and pretty much slept the afternoon. He had no desire for food and they said that was just fine. The nurse assured me that tomorrow's dose should go much better. But YIKES!!!!

I know that this is all part and parcel of what is to happen. I also know that there will probably be harder times ahead. But it is so hard, as you all know, to watch someone you love go through this and feel absolutely helpless.

It makes me really appreciate the good days of the past week!!!

Deb
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  #31  
Old Fri Oct 4, 2013, 06:45 AM
Cheryl C Cheryl C is offline
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Wishing you all a successful transplant and engraftment! I am thinking of and praying for you.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts.
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  #32  
Old Fri Oct 4, 2013, 03:44 PM
Neil Cuadra Neil Cuadra is online now
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Quote:
Originally Posted by DebS View Post
I know that this is all part and parcel of what is to happen. I also know that there will probably be harder times ahead. But it is so hard, as you all know, to watch someone you love go through this and feel absolutely helpless.
Many patients receiving ATG have reactions to pre-meds and/or the ATG, as if the doctors and nurses have to find the right doses of pre-meds by trial and error. My wife had strong cramps from the first treatment, which required pre-med adjustments. After the adjustments she had no adverse reactions during treatment. Doug's reactions were different but I thought you should know that it might get easier, not harder, after this point.
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  #33  
Old Fri Oct 4, 2013, 07:19 PM
DebS DebS is offline
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Thanks, Neil. As usual, you are right. They adjusted his meds today and it was much easier.

I don't mind admitting to anyone that I was one scared wife yesterday!!! But today was much better.

Deb
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  #34  
Old Sun Oct 20, 2013, 11:41 PM
DebS DebS is offline
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Freedom!!!!

Doug was released from the hospital today. His counts are up and he is amazing everyone! We know that we have a long road ahead, but we are so excited!

He was admitted three weeks ago tomorrow. We never dreamed that he would be released so soon. But engraftment came early for him. I know that everyone is different. We feel so lucky and blessed to be at this point in our journey.

I am letting him relax today. He watched football with his feet up! His food intake is good and so is his exercise. The only thing I have to nag him about, and it is important, is fluid intake. But we are working on that.

Thank you everyone for your well wishes and prayers. They are so appreciated as is this forum!

I will check back in from time to time and give updates.

Deb
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  #35  
Old Mon Oct 21, 2013, 01:07 AM
LizR LizR is offline
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Deb & Doug

I'm thankful things are going your way. Thinking positive thoughts for you!

Liz & Bob
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Liz, wife of Bob (64) dx 11/2012 RAEB II now 15% blasts rare t(1;3)(p36.3q21) Vidaza, Aranesp, Exjade
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  #36  
Old Mon Oct 21, 2013, 03:15 AM
Cheryl C Cheryl C is offline
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Great to hear a good news story! May it continue.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts.
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  #37  
Old Mon Oct 21, 2013, 09:56 AM
Mary4Mike Mary4Mike is offline
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Deb,

So happy to read about the outcome, so far, of Doug's journey. It sounds so similar to my husband's. Mike's transplant was the same time of year as his, October 1, 2009. I will pray that he has the continued renewal of health as did my husband.

His protocol sounds similar - no TBI, but also, no ATG. He did a clinical trial of Vorinostat - 30 days prior and 30 - 60 days post transplant (I think) for GVHD. He has had very little GVHD and he is off all meds and has been for quite awhile.

May Doug have continued recovery. It is possible to have life beyond MDS. We do, and we thank the good Lord everyday!

Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #38  
Old Tue Oct 22, 2013, 04:54 PM
DebS DebS is offline
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Thanks, Mary. I find that very encouraging.

Things are going well and we are counting our blessings. He went to the hospital today for a doctor visit and more fluids. Numbers are good. Again, we are so blessed.

I appreciate everyone's feedback and support.

I have said it before, and I will say it again. These forums are great! The people are so supportive of each other. It is like nothing I have ever seen!

Best wishes and continued good health your way as well.
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  #39  
Old Tue Oct 22, 2013, 04:56 PM
DebS DebS is offline
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Liz--Thanks. Haven't heard from you in awhile. What's going on?

Cheryl--Thanks, as always. You are so positive!
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  #40  
Old Tue Oct 22, 2013, 08:11 PM
Heather8773 Heather8773 is offline
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Deb I'm so happy for you and Doug! I bet he's happy to be home! My Husband is looking forward to being able to leave this floor but we are very thankful that things have gone so smoothly for him.
Looking forward to reading more good news about Doug!
Prayers to y'all!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #41  
Old Tue Oct 22, 2013, 11:26 PM
DebS DebS is offline
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Heather,

Tell him to hang in there and keep going. Things can improve very quickly!

Prayers still coming your way.

Deb
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  #42  
Old Sat Oct 26, 2013, 07:28 PM
dfantle dfantle is offline
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Deb, so happy to hear all is going so well.

Heather, I hope Ronald will be released soon.
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great

Last edited by dfantle : Sat Oct 26, 2013 at 07:49 PM.
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  #43  
Old Sun Oct 27, 2013, 12:41 AM
Heather8773 Heather8773 is offline
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Dena and Deb thank y'all!
Prayers are so appreciated!
He's about 1/2 way to engraftment ANC is about 240 now
Hopefully in a couple days now.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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