Engraftment!!!

[dfantle]

Hi, I've been meaning to write the past few weeks to fill everyone in on my unrelated donor "mini" SCT I had on Jan 29. But well, I've been a bit distracted.

So far all is going well & on Tuesday, day 21, my platelets, white cells and neutrophils were all in NORMAL ranges. So this is really ENGRAFTMENT++, because typically they just need to see your neutrophils above 500 for 3 days to declare you're there. My platelets decided to make their presence known 1st & were normal by day 14, & rose to 315k quickly! During this time my white cells and neutrophils were increasing slowly, the Neuts didn't reach above 500 until sometime over the weekend when they jumped for 290 on Friday, to 2,130 on Monday!! White cells 5,300. Red cells are always expected at week 4 so we expect to see them soon. My platelets have not been in the normal range for 23 years and whites/neutrophils for likely 12 years so its amazing!!

Because of the mini or non myeloablative transplant I had and no complications, I've truly only spent 14 hours at the hospital so far. Just enough time to check in, wait for my cells which arrived at the lovely hour of 12:45 AM (unusual for US donors). Ordered my breakfast and they were ready to kick me out just as it arrived! So far we've been able to make it past week 3 with no fevers so no return trips to the hospital yet , tho I know it could still happen.

The next hurdle will be GVHD, this is not predictable but if there are issues we could start to see signs around day 30 or maybe not for months, or if we're really lucky not at all.

BMB is next week which will tell us a number of things, especially my cellularity which was just 5-10% prior to transplant for all 3 lines.

Overall I feel pretty well. Tired, a bit of nausea off & on.

Cheers,

[Neil Cuadra]

Dena,

Wow, what good news! I kept waiting for you to say "but..." with some less-good news, but it's all so positive. Well done!

Good luck with the biopsy results and in avoiding problems with graft-versus-host disease.

[Lisa V]

Wow, that is great news, Dena! Amazingly fast rise in counts. Here's hoping the rest of the process goes as well!

[LoveRapheal1]

I am so happy for you! Is this different from a bone marrow transplant because I am scheduled to receive one if I don't respond to this treatment real soon with an unmatched 10/10 donor because I am really low. I am a 38 year old female and only have Severe Aplastic Anemia. I would greatly appreciate it if you don't mind if you could tell me a bit more about yourself and situation. I must say I know I'm supposed to have faith that God will hear me but I am petrified of this transplant.

Originally Posted by dfantle

Hi, I've been meaning to write the past few weeks to fill everyone in on my unrelated donor "mini" SCT I had on Jan 29. But well, I've been a bit distracted.

So far all is going well & on Tuesday, day 21, my platelets, white cells and neutrophils well all in NORMAL ranges. So this is really ENGRAFTMENT++, because typically they just need to see your neutrophils above 500 for 3 days to declare you're there. My platelets decided to make their presence known 1st & were normal by day 14, & rose to 315k quickly! During this time my white cells and neutrophils were increasing slowly, the Neuts didn't reach above 500 until sometime over the weekend when they jumped for 290 on Friday, to 2,130 on Monday!! White cells 5,300. Red cells are always expected at week 4 so we expect to see them soon. My platelets have not been in the normal range for 23 years and whites/neutrophils for likely 12 years so its amazing!!

Because of the mini or non myeloablative transplant I had and no complications, I've truly only spent 14 hours at the hospital so far. Just enough time to check in, wait for my cells which arrived at the lovely hour of 12:45 AM (unusual for US donors). Ordered my breakfast and they were ready to kick me out just as it arrived! So far we've been able to make it past week 3 with no fevers so no return trips to the hospital yet , tho I know it could still happen.

The next hurdle will be GVHD, this is not predictable but if there are issues we could start to see signs around day 30 or maybe not for months, or if we're really lucky not at all.

BMB is next week which will tell us a number of things, especially my cellularity which was just 5-10% prior to transplant for all 3 lines.

Overall I feel pretty well. Tired, a bit of nausea off & on.

Cheers,

[Sally C]

Hi Dena,
This is wonderful news!! Keep it up!
God Bless,
Sally

[SLB]

I can't believe you haven't had any overnights in hospital!!That is remarkable,i didn't even know they did that! Awesome news.. hope it all continues to be plain sailing for you!

[dfantle]

Hi, feeling afraid of the transplant is totally normal. When I realized I had to have another transplant, I was not happy, but realized I really needed to change my mindset before the transplant, so I decided to focus on the positive. If it works, I will finally be able do the things I love, which I haven't been able to do now for 2 years! And instead of having to be at my clinic 4-7 times per week, I will be able to do many other things I haven't been able to for 2 years as well.

Did you have the ATG treatment? If yes, how long ago was this & what medications are you currently on from this treatment?

It might help you to seek clarification from your Dr if by "Bone Marrow Transplant" they are actually suggesting a Stem Cell Transplant. Sometimes Drs don't differenciate between the 2. If an actual Bone Marrow Transplant, my understanding is the cells in the Bone Marrow are less mature than those in a Stem Cell transplant, so engraftment may take longer and require longer hospilization. There are very good reasons one is preferred over another and getting the clarity from your team will help.
I would also ask them how many of these types of transplants they do each year. Are you comfortable with your Dr's aplastic anemia and transplant experience...

At your age, (still in your 30's) I believe there are several options available and Drs would typically choose the one which is reported to be the best for your age and level of AA. For example you may eligible for the full conditioning treatment (myeloablative). They don't typically do the full treatment at my age (53) which is why I had a "mini" or non-myeloablative. Your Dr should be able to explain to you what treatment he or she is suggesting, and why. In addition to the age factor and severity of AA, there are other factors to consider when the Dr chooses a particular treatment.

You say you have a mismatched 10/10 donor. 10/10 is excellent so is it the blood type that is not matched? If this is the case, there are many patients who have had 10/10 matches with a different blood type and they typically do quite well.

Regarding your donor, my understanding is the donor centers will hold that donor for you for 6 months,

Everyone respondes differently to the transplants & no 2 patients are alike. And although it seems hard to believe at times, it really does go by quickly most days.

My background. I developed SAA June 2011, 3 months following a stem cell transplant I had using my own cells to treat a different blood disorder. I am still in remission from that, but it left me with the SAA. This is almost unheard of, post transplant, but I have had lowish platelets and whitecells for years. Nothing so low that needed to be treated, just watched, but perhaps my marrow was just not strong enough to maintain the 1st transplant, truly though, we will never know for sure why. I had Horse ATG in March 2012 and it didn't work, so for me the next options was the donor transplant I just had. My understanding is that most would have a 2nd ATG before going to transplant, but because of my history and a couple of infections I had over the summer, my Dr determined the transplant was my best bet

Please let me know if you have any other questions.

Originally Posted by LoveRapheal1

I am so happy for you! Is this different from a bone marrow transplant because I am scheduled to receive one if I don't respond to this treatment real soon with an unmatched 10/10 donor because I am really low. I am a 38 year old female and only have Severe Aplastic Anemia. I would greatly appreciate it if you don't mind if you could tell me a bit more about yourself and situation. I must say I know I'm supposed to have faith that God will hear me but I am petrified of this transplant.

[dfantle]

Thank you Sharnie.

With the type of transplant I had (mini or non-myeloablative), and the immense experience my center has with transplants, they only require hospilization during this type of transplant and a few hours after, if there are no complications. if I had the full conditioning treatment (myeloablative) before transplant I would have been in the hospital likely a month. However because of my age (53), I was not eligible for the full conditioning. It's not unusual, however, to come down with a fever post transplant which would have sent me back to the hospital, so far I've been very lucky this hasn't happened. But I am extremely careful about exposure to colds, the flu... At this point other than my clinic appts, and a couple of brief walks outside I spend my time at home allowing very few visitors and they know the rules if the want to come over.

Truly the crazy thing is that my clinic can now do this type of transplant outpatient, in my clinic on the infusion floor, if the patient meets certain criteria and the cells arrive early enough in the day so the infusion nurses and Attending physician can keep a close eye on you for several hours after the transplant. Apparently this doesn't happen very often because the cells don't typically arrive early enough. But with the outpatient transplant teams just 1 floor away, they can be there as quickly as an in-patient doc at the hospital, if needed.

Originally Posted by SLB

I can't believe you haven't had any overnights in hospital!!That is remarkable,i didn't even know they did that! Awesome news.. hope it all continues to be plain sailing for you!

[dfantle]

I had my day 28 post transplant bone marrow biopsy last week and it showed an average of 50% cellularity. With normal production & maturity in all 3 blood cell lines!! Huge difference for the 5-10 percent I had just 7 weeks ago. Not making a lot of red cells yet, though I'm told it can take a few months before the red cell count normalizes enough to be transfusion free.

My medical team is thrilled and I am of course very happy with the results as well. Though, even being my usual optimistic self, after almost 2 years of AA, I still worry now & then that this positive trend could change. It's almost like I'm protecting myself from truly celebrating until I see a good trend holding for several months.

An interesting side note is that because I had a mini or non-myeloablative transplant, also often referred to as a mixed chimerism transplant, meaning for a period of time I will have a combination of donor cells as well as my own. The BMB showed 80% donor cells, and 20% mine. Typically at some point this will likely change to 100% donors.

I'm down to 2 labs per week now, nice change from before my transplant schedule of 3-4.

[SLB]

That's great news! Congratulations!

[dfantle]

Thank you Sharnie