BMT it is. yikes.

[kmartino07]

I had a cbc done yesterday and my hemoglobin dropped to 8.4 from 9.3 (since last week) nd platelets remain the same at 32...after speaking with the nurse she says its best to go forward with transplant. and i agree. i now understand that Aplastic Anemia is Bone Marrow Failure...My bone marrow is not producing any cells. I thought because my counts were holding for longer that that was a good thing. not the case. they should be going up that would mean my marrow was working.

I have finally come to terms with the fact that i am getting a BMT.
I chose to agree to BMT over any other treatment bc although not as extensive as bmt other treatments have their own side effects. ( i have read about ppl's kidneys shutting down, livers, and other things) So i think its best to not prolong the inevitable. And just go ahead and do it.

Super nervous.
Does anybody have any blogs documenting their bmt experience? I have found a couple that I have read. And i love it. It helps me learn more of what to expect coming from a person whos lived it rather than a dr. who hasn't.

I started a blog myself but there's really nothing to it at the moment since i haven't started my treatment yet. (kamara-livingwithaa.blogspot.com)

[bailie]

Kamara, I think this forum has a great amount of information concerning transplants. Keep in mind that everyone's experience is different. Is is good that you are trying to learn as much as possible, it definitely helps. You are a real asset to the doctors if you have a good idea what is happening. The transplant process is a very interesting experience. The transplant itself is not remarkable. I slept through mine. Being young is a real asset for you. Feel free to ask questions.

[traceyn11]

Hi Kamara - Good luck to you. I am waiting for a stem cell transplant for MDS. I was diagnosed in March 2015 and had a date already set, but had to delay it due to a fungal infection in my chest. Have they started the donor search for you yet?

Bailie is right - being young will really be an asset for you. I am also super nervous about having the transplant done. Reading the transplant stories on here and also on a facebook group called Bone Marrow and Stem Cell Transplant Survivors Club have helped me tremendously.

[Marlene]

Kamara,

It's important to know how your aplastic anemia is classified. If it's not severe, then they may not proceed with a transplant. Just because your HGB did not hold after your last transfusion doesn't mean you're not making red cells. I know it sounds weird but it can take a while for it to catch up. They should evaluate your WBC, reticulocyte count as well. They should also check to make sure your EPO levels are at or above 500.

It's good to prepare for a BMT and that you have a match but be sure to get a definitive diagnosis of the stage of your AA. This can matter for insurance purposes too.

It's also good to get a hold of all your test results. Track your CBC's to watch for trends. Keep a record of all your baseline tests from your initial work up. Having a baseline of your chem panel, iron and ferritin as well as B12, folate, copper, zinc and vitamin D levels were. All the genetic testing as well as testing for PHN clone.

Go back and pull it all together so you or any other doctor will have the complete picture. It's good to have if you decide to go for a second opinion also.

[kmartino07]

Originally Posted by Marlene

Kamara,

It's important to know how your aplastic anemia is classified. If it's not severe, then they may not proceed with a transplant. Just because your HGB did not hold after your last transfusion doesn't mean you're not making red cells. I know it sounds weird but it can take a while for it to catch up. They should evaluate your WBC, reticulocyte count as well. They should also check to make sure your EPO levels are at or above 500.

It's good to prepare for a BMT and that you have a match but be sure to get a definitive diagnosis of the stage of your AA. This can matter for insurance purposes too.

It's also good to get a hold of all your test results. Track your CBC's to watch for trends. Keep a record of all your baseline tests from your initial work up. Having a baseline of your chem panel, iron and ferritin as well as B12, folate, copper, zinc and vitamin D levels were. All the genetic testing as well as testing for PHN clone.

Go back and pull it all together so you or any other doctor will have the complete picture. It's good to have if you decide to go for a second opinion also.

Thanks Marlene im looking into those counts now. I have alot of my results i just dont know what any of the numbers mean.

My WBC usually runs around 3.8. The PNH panel and reticulocyte counts are hard to read...At the beginning before AA diagnosis doctors thought i had b12 deficiencey And i received a b12 shot for 7 days. so that actually made that number pretty high at one point. I wish i could attach a copy of my results.
But what i will do is have my doctor go over these things with me so i can have a better understanding. i had so much information thrown at me at once it was hard to retain.
But i did have alot of testing done. And all 3 drs i seen agree that i indeed have SAA.

[kmartino07]

Originally Posted by traceyn11

Hi Kamara - Good luck to you. I am waiting for a stem cell transplant for MDS. I was diagnosed in March 2015 and had a date already set, but had to delay it due to a fungal infection in my chest. Have they started the donor search for you yet?

Bailie is right - being young will really be an asset for you. I am also super nervous about having the transplant done. Reading the transplant stories on here and also on a facebook group called Bone Marrow and Stem Cell Transplant Survivors Club have helped me tremendously.

Hi traceyn11 i will look into that group on fb. And yes we found out my brother is a perfect match for me. Now we wait for a date for him to get some testing done to make sure he is healthy enough to donate.

[Amz904]

Hi Kmartino07,

So sorry to hear about your diagnosis! I was diagnosed with Aplastic Anemia the first week of december 2013 (I was 21) and by the end of december 2013 my counts were:

WBC: <0.1
Absolute Neutrophils: 0.03 (normal is around 1.60-6.10)
I was getting platelet transfusions (to keep them above 20) and two units of RBCs every two or three days.

Between the options of a BMT or ATG, I opted for ATG. The main reason why is because my doctor explained to me that if ATG doesn't work out for me and my counts are still down afterword, I still have the option of going with a BMT after. However, if I opted straight for a BMT and I faced complications I couldn't rewind and try ATG.

I received ATG in January 2014 and by July 2014 I was transfusion free! My counts were still low, but they became stable to the point transfusions weren't needed. Over the next few months, my counts continued to slow climb towards normal. My last lab was July 17th and my WBC was 4.2, hemoglobin 11.0, and platelets are at 82. I'm still on cyclosporine and hope my platelets keep slowly rising up with time but other then that I'm healthy and happy now!


I remember being in the same position as you debating on BMT or ATG, and the side effects of both were pretty scary! I was lucky enough not to face any serious side effects with my ATG treatment, but recovery still wasn't a total breeze. Much of the time I was in the hospital, and receiving many transfusions (the month after AGT in February I received a total of 14 units of RBC and 9 units of platelets) At times my liver and kidney functions didn't look too good, but my doctor adjusted my cyclosporine dose to keep my organs healthy (especially since BMT was still on the table after my ATG so he wanted to make sure I didn't face any organ issues which would effect my ability to opt for a BMT if necessary).

I'm actually kind of surprised that they're pushing you towards BMT so early, since your counts don't seem to look that bad. I think typically doctors push for treatment when your WBCs are low because you become more susceptible to getting sick and you're body not being able to fight it. But since your WBCs still look relatively good, maybe just get supportive therapy for the time being (i.e.: get transfusions as necessary, and labs done frequently to keep a close eye to make sure things don't get drastically worse) until you're 100% sure of the treatment path you want to go on.

How familiar is your doctor with Aplastic Anemia? If he/she is not, I highly recommend a second opinion since the next step you're going to take is a big one! AAMDS also has a conference coming up in Chicago on Oct 24th with some of the leading experts in AA and BMT, so that's a great place to get information and ask questions and meet with other people who have been in the same situation. If your not well enough to go maybe a family member or close friend can go (I think they also have the lectures online in case you can't). But that's a great source of information. When I was in the hospital, my parents were able to go to two of the conferences and talk to the experts and relay the information they learned to my doctor which helped in determining the next steps in my treatment.

Also- the fact that your counts are holding and not dropping that fast is a good sign! Ideally you want your counts to be going up, but if they're not dropping fast it means your bone marrow is at least producing something. In my case, my bone marrow was making close to nothing so without constant transfusions my counts would drop like crazy (at one point my platelets were at 2 prior to a transfusion

Good luck with everything!!

[Marlene]

Kamara,

I sent you a private message regarding the B12.

It is quite overwhelming dealing with this disease. I hope you can take someone with you to your next appointment. It's helpful to have another set of ears and someone to take notes. You can even ask them if it's ok for you record the appointment so you can listen to it later.

I echo AMZ904's suggestion about seeing a doctor who has treated multiple Aplastic Anemia patients. It is such a rare disease and you really want someone with lots of experience. I noticed you were from the Cleveland area. Did you by chance see Dr. Maciejewski at the Cleveland Clinic. I've only heard good things about him from other patients on this site. Outcome are usually better when you are treated at a facility with lots of experience.

Dr. Young at the NIH is also worth checking out.