Haven't been diagnosed yet with AA

[Data]

Hello,
I have been seeing a hematologist/oncologist for a little over a month. She has done numerous blood tests and a bone marrow biopsy/aspiration. She hasn't confirmed any diagnosis but she said the bone marrow biopsy ruled out MDS or leukemia. She doesn't really explain much. By everything I have I have read it looks like a mild case of AA although the doc hasn't confirmed this. Since I have been seeing her my WBC and RBC have gone down slightly (2.2 and 2.7 respectively). The platelet count is essentially the same (50K). The bone marrow report said "hypocellular". I am wondering if this is the beginning of a downward trend. I am obviously concerned. Any ideas or thoughts would be appreciated!!!!

Data

[sbk007]

Data, If you describe how you got to the hematologist in the first place you might get more opinions. Your platelets at 50k are low, and if I'm reading it right your WBC is 2.2 that is low as well. You didn't list your hemoglobin(HGB). What you do describe sounds like it could be a lot of things. Are you taking any meds? start any new meds?. Might even be a virus that will pass. Is your hematologist concerned??
What else did the BMB show? if anything. I mean what did your hematologist say about the BMB?

[Data]

Thanks!! I was sent to the hematologist because my platelets were low. My Hg is at 10.2 right now. You are right - the WBC is at 2.2. I am taking meds for cholesterol and a B-12 supplement (my primary care doc prescribed that because my levels were in the low normal range). The hematologist is hard to figure. She didn't seem too concerned. She did say the BMB ruled out MDS and leukemia.

Thanks again for the reply.

Data

[sbk007]

I guess you should be asking a lot of questions at your next appointment..
All the cell lines are below normal( but not dangerously so) as you probably know.
When they do BMB's they usually look for chromosome changes. This is called FISH or cytogenetics. Some facilities look for gene mutations as well.
Don't know if they did that but might as well ask.
Hope it all works out for you - all the best -

[Marlene]

I would look further into your b12 and other potential nutritional issues. And cholesterol meds can effect bone marrow. It's good to see that your PC is addressing the B12. Most ignore low-normal results. Current thinking is that low-normal is very suspect and should be treated.

B12, folate, B6, copper, iron, zinc and D3 are the heavy hitters for the bone marrow. What was your B12, what type/form of B12 (cyno or methyl) are you taking now and how much. What was your folate reading?

You may be able to play with dosage or stop/change your cholesterol meds depending on your circumstances to see if it helps. Of course, there's a lot to consider with this but it's worth exploring. There's a lot of re-thinking regarding the appropriate use of these meds these days which stirs up controversy in the medical profession.

Nutrition and lifestyle are two thing you can address now with a focus to improve your overall health. They usually don't treat moderate AA. They usually wait until things decline before they treat. In the meantime, you can take positive measures for health.

[Data]

Marlene,
Thanks for the post/info. My lab results were as follows:
Cobalamins, Serum or Plasma Quantitative was 392 on 10 Jul 14
Folate was 12.1 on 9 Aug 14
Iron, Serum or Plasma Quantitative was 144 on 10 Jul 14

I was taking Vitamin B12 (cyanocobalamin), 1000 MCG. My Primary Care doctor told me to quit taking it because my B-12 level had come up. I am going to ask my hematologist what she thinks and go with what she says. I didn't see where they had tested B6, copper, zinc or D3.

I have read that they don't treat moderate and that wouldn't bother me as long as they can do something about my being so tired and getting short of breath so easy.

I have a lab appointment tomorrow and see my hematologist on Tuesday. Hoping she has more of an idea of what is going on.

Thanks again for the suggestions.

Best of luck to your husband. My wife is very concerned so I can imagine what you must have been (and still are) going through.

[Marlene]

In our experience, most doctors are not very good at treating the nutritional aspects of our health. IMO, I would not stop B12 and I would switch to a more bio-available form. Studies have shown restoring low-normal b12, low copper and low D/w K2 can reverse some blood disorders. There's a reason you have low B12 and unless your doctor figured out why, you will have insufficient levels again.

There's lot of info on this site on the topic and if you're interested, I can look for some of the older threads. Or you can search for them yourself. Unfortunately, it's not in one place. It's spread amongst multiple thread of different subjects.

[Data]

Marlene,
Thanks again for the info. I have done a lot of reading on AA on the web. Probably so much that I am irritating my wife but she is pretty patient with me. I guess I am a little too "old school" and take what the doc says as the gospel. I am slowing getting out of that mentality.

I watched a webinar by Dr. Amy E. DeZern, MD, MHS, Assistant Professor of Oncology at Johns Hopkins. It was really good. I may download it and put it on a DVD so my wife can watch it if my doc decides I do have AA.

In my research I have seen a couple risk factors for AA. Three of them that I have seen are 1) ionizing radiation; 2) NSAIDs; and 3) having had sepsis. I have had all three of those in the past few years. The radiation was high dose rate brachytherapy for prostate cancer. I took the NSAIDs (Naproxen) for over 20 years for degenerative joint disease. The sepsis was in conjunction with being hospitalized for anemia. I was also exposed to Agent Orange in Vietnam but I don't think there is an association between AA and AO.

Thanks again for the post. I know I am obsessing about this and try not to talk about it all the time. It is nice to be able to talk to someone who is familiar with AA.

Give my best to your husband!!!

[triumphe64]

Obsessing is very common, probably because none of this is common knowledge and you have to educate yourself.

[Relentless Against SAA]

My son has SAA. When I look back, there is one thing I would do differently. I would take my son to Dr Neil Young at NIH before any treatment is given. Dr. Young is amazing..unbelievable knowledge with SAA, easy to understand, and clearly describes the options available. The patient is his #1 priority. If Dr Young does not feel the clinical trails available at NIH are in the patients best interest, he will explain what he feels is the best treatment and where that treatment is being offered.

I know first hand that the travel to NIH can be a challenge..for example: traveling with a low ANC. Yet I would make the trip every month if it was needed. It is definitely worth the time and effort. As our local hematologist told us: you really only have 1 chance to get the diagnosis right. It is awful when you find out 1 year later you have been given the wrong diagnosis followed by the wrong treatment. Keep in mind, it can be a challenge to get into NIH. Your best chance is before any treatment is given. The care at NIH is free.

May the Lord bless you and all with bone marrow failure.

[Data]

Relentless,
Thanks for the information. I am not sure I could afford the travel. I have an appointment with my doc tomorrow. I am anxious to see what she has to say. I am considering getting a consult from the VA.

Thanks again.