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  #1  
Old Mon Apr 22, 2013, 07:34 PM
Heather8773 Heather8773 is offline
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How do you decide BMT is right for you?

I hope anyone is willing to share what was the point, factor, etc that made them decide that BMT was the right path for them?

This is so big and confusing I really appreciate any response!
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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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  #2  
Old Mon Apr 22, 2013, 07:46 PM
Peachy Peachy is offline
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Hi Heather -
I am anxious to see the replies to your post. My husband is 68 and getting close to the "decision" time as all have said the risks are much higher when you get older. How old is your husband?

We are also trying to figure out the difference between a Stem Cell Transplant vs BMT. Am thinking the SCT is a "mini" transplant.

Hope your search goes well....... Peachy
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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  #3  
Old Mon Apr 22, 2013, 09:37 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Peachy View Post
We are also trying to figure out the difference between a Stem Cell Transplant vs BMT. Am thinking the SCT is a "mini" transplant.
These terms are worth an explanation.

There are two primary differences between a stem cell transplant and a bone marrow transplant: how the stem cells are collected from the donor, and statistical outcomes for the patient.

For the donor:
With a stem-cell donation, the donor is given injections of a drug that brings their stem cells into the circulating blood. The cells can then be removed just like donating blood. No surgery is needed, recovery is quick, and side effects from the drug are rare.

With a bone marrow donation, the donor is given an anesthetic and undergoes removal of bone marrow (usually from a hip) in a surgical procedure, similar to the bone marrow biopsies that patients get. The donor will be sore for a few days. There are no drugs other than the anesthetic and the risks are like those of any other minor surgery.

The donor may have a preference for one method or the other.
For the patient:
In either case, the patient receives chemo and/or radiation (referred to as "conditioning") to "zap" their broken bone marrow, and then gets the donor's cells through an IV, just like getting a transfusion. The new donor cells travel to the marrow, replacing the old cells.

Doctors have done research to learn whether it matters to the patient whether it's a stem cell transplant or a bone marrow transplants. Overall survival is basically the same. Stem cell transplants tend to have an edge in engraftment speed and recovery time while bone marrow transplants tend to have an edge at limiting the long-term effects of graft-versus-host disease (GVHD, which is when the patient's new immune system fights with the patient's own cells).

There may be medical reason for the patient to prefer one method over the other. In past decades all transplants were bone marrow transplants. These days stem cell transplants are more common. But what's right for a given patient is something to talk to the doctor about.

The question of a full transplant vs a mini-transplant is a separate matter.

In a full transplant, the patient receives full doses of chemo and/or radiation. In a mini-transplant (also called a "reduced-intensity" or "non-myeloablative" transplant), the patient receives less chemo and/or radiation or a less toxic chemo drug.

Full transplants have the edge when it comes to completely curing the disease, because all of the faulty cells are gone. But you have to be strong enough to survive the transplant. Mini transplants have the edge in reducing the risk of the transplant process, making them more suitable for patients with advanced ages or with other health conditions.
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  #4  
Old Fri May 3, 2013, 02:14 AM
dfantle dfantle is offline
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It was a difficult choice for me. I kept hoping the ATG would work and wanted to wait a little longer to see if it would. For me, though, 3 months after my ATG although initially my counts had started improving, I ended up with a small skin infection and my counts crashed again. Took the full round of antibiotics but 1 month later it was back, and again 6 weeks later. My Dr told me she would have been OK with me waiting if I hadn't had the infections but the infections made the risk too great, and I was fortunate to have a perfectly matched unrelated donor. So for me the infections were the driving factor.

I'm in my early 50s so the protocol for this age was a "Mini" SCT. I'm now 3 months post transplant and all is going well. My 28 day post transplant bone marrow biopsy looked so good and my blood counts were so good the team didn't even do the 60 day biopsy. I had my 84 day bone marrow biopsy last week and the results show my bone marrow is now normal. Everything looks healthy and my cellularity is normal for all 3 cell lines.

My platelets and white cells/neutrophils have been at normal levels since 2 & 3 weeks post transplant. Red cells continue to improve with the last transfusion lasting 5 weeks. (Red cells are the last to normalize and can take months post transplant). So far so good!!
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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
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  #5  
Old Tue May 7, 2013, 09:10 PM
mausmish mausmish is offline
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Heather,

BMT was a very difficult choice for me. I shared my thoughts in my Story of Hope at http://aamds.org/patient-chronicles/karen-woys. Please feel free to contact me if you have more questions. I'm now 2-1/2 years post transplant and have no regrets. My husband and I have shared our journey in a blog, linked in my signature.

I've been extremely fortunate in my recovery and have found that the anticipatory fears were much greater than the actuality. It is a very personal choice, however.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #6  
Old Fri May 10, 2013, 12:23 AM
Heather8773 Heather8773 is offline
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Thank you all for the replys
Peachy thoughts and prayers to y'all. Has your husband had any treatments? ATG? My husband and I came to an agreement that this needs to be his choice bc of the fact that there is unfortunatly room for guilt or resentment if God forbid anything difficult happens. And we realize he needs to be mentally ready.
So for now he is on the path to transplant.
We have relief in the fact that his Dr said he has until the week of to back out and it seems he has months to think things through.
Dental work first. Cant restart an immune system w pending dental work.
Looking for match.
Physical tests.
Strengthining .... spiritual, mental, and physical
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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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  #7  
Old Fri May 10, 2013, 08:56 AM
Bhutt Bhutt is offline
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Mausmish did you have a full transplant. My day0 for transplant is June 27 I'm 57 & having a full transplant. When I first went for consolation they said I would have a mini because the cut off was 55. Then the doc came in and said since I have no symptons except lower blood counts but no transfusions that he wants to do a full.

Thanks Blair
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  #8  
Old Fri May 10, 2013, 09:45 PM
dfantle dfantle is offline
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Hi Blair, best of luck with your transplant. A couple of questions,

1. Where will your transplant take place?

2. Is this a related donor or unrelated donor?

3. Is this for AA or MDS?

Dena
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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
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  #9  
Old Fri May 10, 2013, 09:50 PM
dfantle dfantle is offline
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Talking

Heather, you and your husband are very wise in your process of decision making and planning ahead. Being in the right mental and physical state can be really important when heading to transplant. And also taking care of things like dental work, because it will be at least one year post transplant before any dental work can occur.

Best of luck.
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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
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  #10  
Old Sun May 12, 2013, 10:19 AM
Bhutt Bhutt is offline
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Hello Dena

1 Halifax n.s.
2 matched sister
3 MDS

Thanks Blair
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  #11  
Old Sun May 12, 2013, 10:12 PM
mausmish mausmish is offline
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For Blair

Blair,

I had a full myeloablative transplant, matched unrelated donor for MDS. Please let me know if you have more questions.

Karen

P.S. I have friends in n.s. - lovely place. Hope to visit again someday.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #12  
Old Wed May 15, 2013, 11:34 AM
Peachy Peachy is offline
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Thanks Heather, Neil and all. I have been off line for a bit and am still learning how to find the searches I have visited. I appreciated reading all the comments and the explanation from Neil on Mini vs full BMT. Husband's blasts seem to be getting higher faster than before. 4% in Mar and now showing 7%. What is ATG? All I seem to have found is it is a drug before transplant. (I have not searched this forum yet, but will do so next.) Peachy
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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  #13  
Old Wed May 15, 2013, 06:03 PM
leesa leesa is offline
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confused and scared

In March of 2013 my mother was diagnosed with Paroxysmal nocturnal hemoglobinuria (PNH) which has turned into Severer Aplastic Anemia... Her doctor sent us directly to Boston Mass. where she did a round of ATG, which was about 8 weeks ago now... it seems that the ATG did stick once or twice. Her red and white blood cells will hold their own for 7 to 10 days. The highest her platelets ever got was 35,000... within a few days there right back to two or three or four thousand, she needs them every 2/3 days... we go for bone marrow transplant consultation on May 30th my question would be... do we go through another round of ATG... or just go ahead with BMT? My mother is in good health other than the SAA... but she is 67 years old... also she has two siblings that are matches, so is there a higher percentage for a successful transplant if you use a male or female sibling donor? I am so glad to hear that some for you have had a successful BMT and are still doing great!!! I am confused and scared….
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  #14  
Old Thu May 16, 2013, 05:52 PM
Karenish Karenish is offline
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Leesa, bit soon to think the atg hasnt worked, I was transfusion dependent for 10 months, then all of a sudden sweet but slow climb. Now fairly normal cept platelets hover around 60! life is good, dont give up too soon xx p.s. I am 53
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  #15  
Old Mon Jun 3, 2013, 12:57 PM
EmilyS EmilyS is offline
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Leesa,
8 weeks is still early to say for sure if it has worked. I had my first round of ATG in Oct 2011. I saw results in 4 weeks, but they weren't great results. My numbers came up, but only slightly. I had another round of ATG in April of 2012. Again, saw some results in 4 weeks, but after that it was a slow climb. But here I am now, 14 months after my second round and I have completely normal blood counts and clean bone marrow! I have also been on cyclosporine since Oct. 2011. Best of luck to your mother!
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Emily, 29 years old, diagnosed with severe AA in Oct 2011; treated twice with ATG and Cyclosporine. Currently on no meds with labs in normal range
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  #16  
Old Mon Jun 3, 2013, 10:10 PM
teke152 teke152 is offline
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Successful BMT

My wife had a BMT in January this year. She waited 6 months after trying the ATG Rabbit, and IVIG. It was the best and last option for us. There are drug trials (High Dose Cytoxan, among others) that may be an option, however, the process was not very much different than the BMT, nor were the side effects.

My wife has been very successful with her BMT, and has not required a transfusion since she was released from the hospital. If you have found a good match, it worth looking into it. Make sure you have a good support system, and prepare ahead. We had to make a lot of adjustments, and honestly, we still do.

Best of luck
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