very new - very confused

[jennifercanada]

Hi everyone. I am extremely new to the board, and extremely confused by the recent diagnosis my uncle received.

He was diagnosed with Aplastic Anemia, autoimmune acute leukemia. (I believe? these words are all new to me).

The hematologist he saw said his platelet count must drop to 10 before treatment can start, as it could be toxic before that point. His platelet count has been steadily dropping for a few weeks, and last week reached 23. This week, it is 26... and we are confused! Does this often fluctuate? His hematologist said it *could* level off and rejuvenate .. would we be having false hope in thinking this small spike may be a good sign??

His hemoglobin continues to drop - is now @ 105 (from 111 last week).

so sad. and so confused. ANY personal stories or experience with this would be so appreciated.

thank you.

Jennifer

[Lisa V]

Jennifer, I am so sorry to hear of your uncle's diagnosis. I'm sure all of the unfamiliar terms must be overwhelming, but it might be helpful to have a further conversation with his doctor, as you seem to have come away with some slightly garbled information.

First, aplastic anemia is not leukemia. It does sometimes have the ability to transform into leukemia, and as such may be regarded by some as a pre-leukemic condition. This is by no means inevitable, but AA is also a serious illness in its own right. Both are in the category of bone marrow failure diseases, and both are seen by a hematologist/oncologist (hem/onc for short). AA is generally considered to be auto-immune in nature, so perhaps his doctor was using the term "autoimmune leukemia" as an attempt to describe it using words that are more familiar to most people.

Second, treatment is not any more toxic if the platelets haven't fallen to 10, it's just that they like to wait until that point to make sure it's absolutely necessary. The reason is because successful immunosuppressive therapy (IST) doesn't necessarily return all counts to full normal. It is considered a success if the patient is able to remain above the level of needing transfusions, which for platelets is usually 10k (and 8.0 for hemoglobin). If your uncle is not yet transfusion dependant, there may not be much to gain from him going through ATG/cyclosporine therapy or a transplant.

Yes, it is normal for counts to fluctuate, so unless the trajectory is steadily and unrelentingly downward, there's always hope that things could stabilize or even turn around on their own. Statistically that seems to happen about 20% of the time. It's hard to wait and watch, but that's the name of the game for these types of disorders, and it's better than rushing to do something just for the sake of doing it. All of the conventional medical approaches do carry some degree of risk and toxicity, so it's not something to rush into unless the alternative is even more risky (and being transfusion dependant would qualify).

You will find lots of personal stories and other information in the various sections of this forum, including plenty of success stories. Please feel free to ask any specific questions you may have as they come up.

[Neil Cuadra]

Jennifer,

You are doing exactly the right thing by learning about aplastic anemia (and its terminology) and seeking answers that can help your uncle.

Another great source of information is the Aplastic Anemia & Myelodysplasia Association of Canada.

How to contact them:

• website: aamac.ca
  
  
• phone: 905-780-0698 or 888-840-0039 toll free
  
  
• fax: 905-780-1648
  
  
• email: info@aamac.ca