Blast Count going into Transplant?
 

I am the wife of diver down. MDS Diagnosis 10/2013 pancytopenia and very complex cytogentics; Just finished cycle 3 SQ Vidaza- BM bx just before cycle 3 stable but still with 10-15% blasts; next week will be meeting with transplant doc - 10/10 donor identified; Still with pancytopenia and require blood transfusion every 2-3 weeks; will meet with team next week to discuss going directly to transplant now vs AML type induction chemo vs continuing on the same course with vidaza-( though they do not think the same course will offer response)
has anyone gone directly into BMT without getting blasts down <5-10%?

Diver down's wife,

I think your situation is interesting because I am on a seemingly parallel path. I am starting my second round of Vidaza Monday. My hematologist has mentioned a BMB perhaps at the end of second round or third round with the possibility of going to transplant. Right now I am in pretty good condition and still golfing even though my blood numbers aren't terrific. I have not had any transfusions yet since energy level is still fine.

I am thinking that the strategy might be to go to transplant while I am feeling healthy, rather than wait until condition deteriorates. I will find out more soon.

I am in a similar situation. 2 rounds of Vidaza have not reduced my blast count, currently sitting at about 6%. I am scheduled for transplant the week of Feb 10th or 17th. We have 4 10/10 donors that have been tested, just doing some cross matching, all male, all younger, which is helpful from what I hear. I go in for what will probably be my last pre-transplant biopsy (#9) on Monday, go in for all of the pre-work this week.

There are quite a few studies available that compare Vidaza versus induction chemo, versus vidaza + induction chemo prior to transplant. The current information leans toward vidaza or induction, but not both. Almost all of these studies are retrospective in nature, meaning that they don't really take into account current results nor current approaches to patient care, which makes them informative, but not instructive.

The risk of a higher blast count is relapse, the risk of additional chemo to reduce the blast count is a weakened patient who is more susceptible to the inherent risks of transplant, so it like most things MDS, it is a combination of art and science.

Although I love to have numbers and reduce risk as much as possible, this is a point in my life where I am trusting my doctor and his team to make the right choices and for me to follow instructions as closely as possible to ensure the best results.

Lastly, there are a lot of transplants that are done, according to the registries, for patients that are in the RAEB - 2 category (higher blast count), so it is not uncommon for patients under 20% blast count to move forward to transplant.

Wishing you and your husband the very best as you go through these decisions.

Dan L,

Thank you for your perspective. What is your age and are they talking the "mini" transplant, or regular? Did your blood counts do anything special during the two rounds of Vidaza? Are you feeling about the same after the two rounds?

Bailie,

Unfortunately, I have not had any real positive response thus far to Vidaza, but keep in mind that Vidaza can take up to 6 cycles to see an improvement for some patients. At 6 cycles, 91% of people who will respond, respond at that point. After 3 cycles, I believe that it is 70% of those who are going to respond, do. Every individual seems to be pretty darned unique when it comes to response, but the above are backed by the study below.

http://www.ncbi.nlm.nih.gov/pubmed/21656747

Do I feel better or worse? I would say that in general, I do not feel better, but the problem is that I may have felt worse regardless of starting Vidaza or not.

I turn 40 in February.

@ Diver Down's wife, I did read an interesting article the other night suggesting that 12% is a critical number of blasts at transplant, meaning that there was not a significant difference in survival between people who were under 12% vs 12% or more at transplant. The study was for AML patients, so it may not be fully applicable, but may be a guide.

http://link.springer.com/article/10....185-013-1312-1

Thank you both for your input.

Dan L - the article about outcome in patients with AML and their blast count going into transplant was very interesting. We will be meeting with the doctors on Thursday and will await their recommendations.

I support you both and hope success on your upcoming journeys.

Meeting with Transplant doc
 

So last week we met with the doctors to discuss the final results of the bone marrow biopsy done just prior to Cycle 3 Vidaza and treatment options at this point.

They noted the blast distribution was patchy. 9% in some places, 15% in others, less than 5% in other places. Overall stable from original diagnosis with MDS RAEB 2 10-15% blasts. In spite of the blast volume they recommended to proceed to SCT with a fully ablative conditioning regimen. They feel his poor cytogenetics with multiple chromosomal abnormalities is the greatest determinate of his outcome.


Alternatives to this approach would include:

1. Watiing for another 2 courses of vidaza. No guarantee that the current status of his disease will improve further and he may even progress during this time.
2. Giving a course of AML type conditioning but this may compromise his current good performance status for a 50-70% chance of reducing his current blast percentage to less than 5%.

So they recommend a tentative admission date of Feb 14 (Happy Valentines Day?) for conditioning treatment followed by transplant with a 23 y.o. 10/10 unrelated donor. Exciting and scary at the same time.

Dan L and Ballie - where is your transplant center?

So interesting. I am getting my treatment at Oregon Health Science University (OHSU) in Portland Oregon. The interesting part is how my situation seems to mirror Diver Down's. I will be getting a BMB on February 7th just before my 3rd round of Vidaza. The big decision will be to stick with the Vidaza as long as there is a response or go straight to transplant while I am feeling great and not showing any outward signs of MDS/AML. I am not sure there is an absolute correct answer. From everything I have read, the trend is now to go to transplant sooner, rather than later.

I am looking forward to see my blast count with the next BMB. The one study I have read suggests that a 12 percent blast count, or lower, is significant.

From the wife of diver down-

We proceeded with admission for SCT on 2/14/14- It has been rough course- conditioning treatment was Fludarabine/Busulfan and ATG- He had bad febrile reaction to ATG He had the stem cells on 2/21 - that night he had fever to 105 - not sure if related to stem cells or residual from ATG. That has resolved but Gi symptoms started. He feels there is no relief and has never felt this bad for so long.No energy no appetite, hard to keep up even with doing the incentive spirometry. I am trying to keep him positive but he is so blue.

I wish Diver down the best. As mentioned, I am on the same glide path. I have completed 3rd round of Vidaza and I will go to transplant as soon as we find a suitable donor. Apparently I have a difficulty in getting a match.

How was Diver down feeling before going into the transplant preparation? Did Diver down have the "mini" transplant?

Diver Down,

I sent you a text... Wife of Diver Down, Please tell him: I know how you feel, right after transplant is an incredibly tough time, I remember I couldn't eat for nearly two weeks with the Mucositis at both ends... My mouth and butt felt like they were fire for at least 10 days, and all I could stomach were Chocolate milks and Ensures...

You will get past this !!!!, and you need to stay positive, it is essential to your recovery not to get blue..... You will be looking at all of this in the past tense - very soon; I'm already D+116 days since my transplant, it went in the wink of an eye...

God bless, prayers your way, feel BETTER!!!!

He was feeling good before the transplant- even with a hemoglobin of 7 could walk 3 miles 3 x a week on the beach.... though prior to his diagnosis in October was cycling 50 miles a few times a week

He had a full myeloablative transplant.

Dear Whizbang,

Thank you for your words of encouragement. He did receive your text. It was so greatly appreciated and very helpful!! Although I try - words from those who have been through this are far more encouraging then mine. I am with him all the way and I know he can get through this!!!! Now I am going to ask for a chocolate milk. Thanks

Wife of diver down, i am right behind you in the process. My last ATG will be tonight, first one was a doozy. I still have pretty good energy, have received 16 hits of busulfan, 2 hits of cytoxan, and finishing up 3 shot of ATG. All was pretty good until the first ATG, which was rough. I tend to quote lines a little too much, but it is always darkest just before the light, so as long as your husband knows the sun is coming, he will prevail.

Dave, your perspective and experience helps a lot, thank you for continuing to share and inspire.

Wife of Diver Down-
Now on Day +5
Conditioning regimen was Busulfan/Fludarabine ATG
Neupogen was started 2 days ago - I am told to help with engraftment. He went into the transplant with a total WBC of 1.1 on admission. With the neupogen his WBC went up to 4.5 and today 3.7. We are puzzled because we thought the conditioning treatment would wipe out the marrow.
Has anyone seen this before?
How long does after the conditioning treatment does it take for the white cells to be <0.2?

Wife of Diver Down,

You're welcome to create your own Marrowforums account, perhaps named "Wife of Diver Down", to make it clear that it's you posting!

The neupogen is supposed to stimulate WBC's, and yes depending on the intensity of the conditioning it is supposed to wipe out all of the WBC's... I had the 11 rounds of Total Body radiation first, then conditioning, so ALL my WBC's were wiped out to <.01 for about a week... Then I got neupogen at D+7 if I recall...

Depending on the Hospital, different protocols may be used, and your husband's marrow may not all be gone yet... Sometimes there is a period of mixed engraftment, 50% Donor / 50% Old cells... It may take a few weeks / months until full engraftment...

This is my understanding at least...

God Bless and be well...

The way I understand it while following Dave's journey. After conditioning or while conditioning the WBC's goes to near zero. Then after the conditioning and Stem Cells they jump start the WBC's w/ the neupogen. Then you begin making your own WBC's. Whizbangs Journal is an incredible diary of the day to day experience of the BMT. I have yet to see such a detailed roadmap as Dave aka WHIZBANG provided while he was in transport. Truly amazing.
It should be a sticky :)

The timing on this question is very funny. I experienced a crash from 8700 down to 1678 1 day ago, received my cells, and jumped to 6400. The doctor said that it is not uncommon to see a jump after infusion, but that generally means that everything in the blood will still be dead or dying and that we will still hit a very low count. I will share as my numbers change.