A little update-A little venting.(no judgement please)

[kmartino07]

Hi guys. Idk if anybody has actually been following my story/post. but i feel like updating.

Has anyone noticed that pregnancy makes condition worse? I was diagnosed with SAA in July 2015 after three biopsies and low blood counts. And receiving blood and platelet transfusions at least once a week. (As fast as I was getting the blood I was needing transfused.) Now I am no longer pregnant my counts are holding for longer. Since August( end of pregnancy) I have only needed two red blood transfusions. And at a month apart. 09-04-15 then 10-12-15...no platelets since 08-13-15...I was (am) being worked up for BMT (brother match)....I just had a biopsy done this past Thursday. Depending on my cellularity determines whether I need a BMT or not...Originally at time of diagnosis I was at 11% Dr says I should be at least 70%... so I am just waiting for my results...If my percentage improved then docs will look into some other form of treatment. Maybe watch n see. Or some shots to help my own blood production.....I just wondering has anybody heard of, experienced, or know someone who has dealt with a similar situation... I'm just kind of confused and a little annoyed bc I went thru a lot just to get to a point where now nobody knows what to do with me...I don't get my results for about a week or two...but I'm just curious to see if anybody can relate.

[kmartino07]

CBC results 10-22-15

Hemaglobin:9.7 (last transfused 10-12-15)
Platelets: 30 ranging between 25-34 last transfused 8-13-15
WBC :3.59 (usually around there)

i was told all other numbers are "borderline" neutrophils, reticulocytes,...etc..Hence the need for another biopsy before transplant.

[Neil Cuadra]

Kamara,

It may still be too soon to know where your blood counts will settle post-pregnancy. In any case, monitoring is clearly necessary and it's good to keep your options open.

[Marlene]

Hi Kamara,

In general, SAA is a very frustrating disease to deal with....lots of "watch and wait" especially if your results are not clear cut. It is important to get the right diagnosis though. And pregnancy complicates everything. Pregnancy can be very hard a women's body and can take quite a while for it to recover...nutritionally and hormonally.

John's doctor told us that bone marrow cellularity was mostly used to rule out MDS and cancer. And that people with low cellularity can still produce normal blood counts. So peripheral blood counts are really more important than bone marrow cellularity once it's deemed the BM cells are normal. As a point of reference, in John's case his BM was 20% and his counts were much worse than yours.

Marlene

[kmartino07]

Hi Marlene thanks for the reply. This whole process has been frustrating indeed. At time of diagnosis I was classified as SAA and they(docs) wanted to move forward with treatment quickly. This was in July. The only reason for delay was that I moved to be closer to my family. Then the doc went back on forth between Atg/cyclo versus BMT. During this time I noticed my counts were not dropping as fast as they we're while preg. It seems the further away from pregnancy the more stable my counts. My transplant doc picked up on this trend as well. Thats where we are now. He tells me at this point we need to classify my AA. Hes telling me that although my counts are holding longer without transfusion(which is good) hes doing the biopsy to check my cell count and if it's below a 10% then I would be considered SAA. he said it's either blood count or cell percentage it doesn't have to be both. If I am considered severe based on the results of my biopsy we will proceed with transplant.

Last November 2014. I was hospitalized with a kidney infection and my doc noticed my low blood counts then. But we never really explored the cause. Negligent on both our parts. So we are thinking my AA wasn't caused by pregnancy it just got worse bc of it. So now I am no longer pregnant I am back to my "normal". Which I know wasn't severe. So now I'm just wondering what kind of treatment they will do for me. Or should I just go back home and go to work and go back to my life before all of this. Idk. This whole thing caused a lot of troubles for me. I'm just in a confused, frustrated state.

[Marlene]

Well that's an interesting twist Kamara. Pregnancy will place a huge burden on your nutritional requirements and since you had a possible B12 issue I would look into this aspect of your health. I will think about this a bit more and send you a private message with some other things to consider. Hopefully you got the one sent before.

As far diagnosing SAA, I have yet to find any recommendations to treat or classify Aplastic Anemia base solely on cellularity of a bone marrow biopsy. So please take this into consideration if your doctors bases his diagnosis solely on the biopsy.

Staging of aplastic anemia is based on the criteria of the International Aplastic Anemia Study Group (IAASG).

The IAASG staging criteria for blood is as follows:

• Neutrophils less than 0.5 X 10 9/L
• Platelets less than 20 X 10 9/L
• Reticulocytes less than 1% corrected (percentage of actual hematocrit [Hct] to normal Hct)

The IAASG staging criteria for marrow is as follows:

• Severe hypocellularity
• Moderate hypocellularity, with hematopoietic cells representing less than 30% of residual cells

Severe aplasia is defined as including any 2 or 3 peripheral blood criteria and either marrow criterion. A subclassification has been developed in which individuals with neutrophil counts lower than 0.2 × 109/L are classified as having very severe aplastic anemia (VSAA). Patients in the VSAA group may show a better response to immunosuppressive therapy

[Hopeful]

Hi Kamara,

I can understand your frustration with just wanting to put this disease behind you. I can also understand why your doctors are slow to proceed.

It is thought that major stresses to the immune system may be one of the contributing factors to AA or relapse. Stresses include major illnesses/viruses, surgeries, and pregnancy.

The doctors took an oath to "first do no harm", and therein lies their struggle. It may be possible that your body is able to recover on its own without intervention. However, it is unclear what kind of recovery you will achieve on your own and whether your marrow will remain in its more fragile state.

You are young and that makes you an ideal candidate for BMT or ATG. However, these aren't benign treatments and typically aren't given if a person's AA is not severe. You were severe, but now you are not. Your doctors are likely debating whether it is worth the risk to have the treatment at this point.

Unfortunately, there is no easy answer here. It takes a long time for the marrow to recover and the cellularity to improve (months/years). The counts will improve first.

I just want to say that I feel for your situation with wanting to move on in *some* direction. Hopefully, you will achieve some clarity soon!

[kmartino07]

Thanks @Hopeful for ur response. I understand that now. I get a little frustrated at times bc at one point it was such an urgent issue and now it seems like nothing. I am glad that my condition is improving though. I do not want to go thru any unnecessary treatment if i dont have to. And i appreciate the doctors paying attention and slowing down their approach. It is a waiting game at this point but while im waiting i am unemployed until i get the go ahead to return to work. Which adds to my frustration.

@Marlene thanks for the reply. I did get ur private message. I forgot to pull it up and discuss those nutrional values with my doctor. But i will when he or his team contacts me with my biopsy results. Based on the information u gave me on my post. As of right now. It doesn't appear that i am SAA anymore. And i don't want to have a BMT just based on my cell production. I appreciate that information. I understand that better than looking at all this paperwork.

Now i have another question. Do doctors typically treat MAA? if so how? And just in opinion how long should i wait to see if my condition improves completely? its been almost 3 months. Prior to pregnancy i was MAA and it seems where i am now is where i started.

[Marlene]

It can take quite a while. It took John years after treatment to get to where he's at. His platelet and red cells are still below normal but stable. His HGB holds at around 12 and his platelet are around 90 - 110. But it looks like you may be well on your way already. It takes time to get comfortable with lower than counts both physically and emotionally.

I took him two years to get transfusion free. But he was on the extreme side of the bell curve for recovery. Most who underwent hiCy treatment recovered much sooner.

Regarding MAA, I think there may have been some clinical trails in the past but I'm not sure what the current thinking is right now. I'll have to look into it. You may want to use the search function at the top of the site and type in MAA to look at past post on the subject.

[Marlene]

You may want to contact the NIH regarding the use of Eltrombopag for MAA.

https://clinicaltrials.gov/ct2/show/NCT01328587

[Hopeful]

Typically, it is just watch-and-wait for MAA, unless a patient becomes severely transfusion dependent or the disease progresses/transforms. Sometimes doctors will try a course of Cyclosporine during this time. From Marlene's post, it looks like Eltrombopag may be another option.

Unfortunately, it can take a long time (year+) for the marrow to heal, even with ATG/Cyclosporine. Many people never achieve "normal" numbers again. However, you can still go ahead with your life in the meantime.

[Taralv]

Hi, Kamara. I am sorry to chime in late, but I've not been on here for a while. I was diagnosed with this disease during my pregnancy in March of 2014. I also needed weekly blood and platelet transfusions and I was induced at 37 weeks because they were delaying treatment until after pregnancy. They gave me about 2 months - initially my hemoglobin held, but the platelets never recovered. Then I started needing blood transfusions again. At that point I was evaluated for a transplant, but my only sibling was not a match. They decided on an ATG/cyclosporine and I had that treatment in November of 2014. My counts slowly but steadily improved. They are ok, not normal. Hemoglobin stays around 11, platelets topped out in the 160's but they fell back to the 120's. Now I'm off cyclosporine because it made me really terribly sick, and the platelets seem to be slowly falling. It's only been a few months, so they are just watching. I feel like I just wish I knew what to do and how to fix this.... But I just wanted you to know that you are not alone. It can be hard to go through this with a newborn and older children relying on you. This probably doesn't help, but if you have any questions, please ask. Good luck to you!

Tara

[TASHMAC]

I also wanted to send support your way. As a mum it is even harder so I really feel for you.

As I did not have a sibling match I decided to try ATG. I had horse ATG in November 2012 and all was going well until March this year when I relapsed. I had rabbit ATG in May and while my results are not wonderful I am transfusion independent.

Good luck and stay strong.