New to Forum ~ Prediction of Rate of Blasts Increasing

[SLB]

Hi, I am terribly new to this and hope I have posted in the right spot... I am a 36 yo female that began on this roller coaster 2 and a half months ago after I went to the doctors for a sinus infection and asked for a blood test because I was getting some random unexplained bruising. 5 hours later the doctors were telling me I had a platelet count of 61 and blasts in my blood and they thought that I had AML. Within the week I was told I had MDS-RAEB 1 with 7% blasts. Unfortunately the doctor was unable to get fluid from BMB to get cytogenic info that he wanted to get a IPSS score. One month after first BMB, I went for a 2nd BMB and needed a platelet transfusion because platelets were at 29. Once again I was told that he couldnt get fluid (said this was a mysterty?) however that my blasts had increased to 13% so even without that info I was in the Int 2 catergory and he wanted to start me on azaciditine and refer me to BMT team (already started testing on myself and 3 siblings).

My questions are about prediciting the progression of the blasts? my blasts have increased 6% in 4 weeks, so on average 1.5% in a week... since it has been 2 weeks since the 2nd BMB does anyone know if then my blasts would have increased to 16%? I am assuming that it will be a further 2 weeks until i start the azaciditine and if my blasts keeping rising at the same rate then I will be coming close to the magical 20%?? and especially if it takes a couple of cycles for the injections to work.. Does anyone know if blast increases can be predicted to follow the same pattern?? Also does the blasts in your marrow correlate to the blasts in your blood? will they know if the blasts increase to 20% from blood tests alone or only from BMBs??

wow.. i think that is enough questions for now.. hope it all makes sense... thanks for reading and hopefully someone might know some answers! Also thanks for the great forum, have found it very helpful in the last month and believe it or not reassuring

[DanL]

SLB,

Welcome. As you are discovering, there are a lot of questions to be asked when you are first finding out about MDS. There are many better qualified individuals on the forums who will most likely chime in, but I thought I would get you started.

The easy one is that blast percentage in the blood does not directly correlate to the blast percentage in the marrow. It is possible to see a correlation, but a bone marrow biopsy is the only accurate way to get an understanding of the blast count in the marrow.

Blast progression is not a formula as best I know. There are some people whose numbers creep up slowly, others quickly, and many times this is erratic and dependent on the person. Also, since a bone marrow biopsy is only taking a look at one section of marrow, it is possible to see different results from different biopsies, especially early in the disease.

If the doctor was having problems getting a good sample, it is possible that you have hypoplastic mds or a high degree of marrow fibrosis. How are your other blood counts?

Make sure you ask your doctor every question that you have. Also, if you have not already done so, make sure to set up an appointment with a doctor at an MDS Center of Excellence. MDS has a bunch of different categorizations, and you may benefit from the additional expertise.

Dan

[Birgitta-A]

Hi SLB,
You know I have had 5 BMBs since dx 2006 and due to severe fibrosis they have never been able to get an aspirate. They have looked at chromosome aberrations twice though I have hypocellular (few cells) bone marrow.

As DanL wrote "since a bone marrow biopsy is only taking a look at one section of marrow, it is possible to see different results from different biopsies".

As far as I understand you are getting the best possible treatment with Vidaza and SCT since you are very young and probably don't have any other diseases.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, txs dependent from dx due to severe fibrosis, supportive treatment until 2010 when I started to take Thalidomide + Prednisone with positive results.

[SLB]

Thank you for your replies.. I am not sure of exact amounts but the haemotologist says that my other blood counts are ok and it is mainly my platelets that are an issue. What you wrote makes sense about blasts in marrow.. and will ask doc next time I see him.. just didnt think of it until after appt last time cos we were too focussed on talking about vidaza and SCT. Not sure about fibrosis.. he words were it was abit of a mystery why they couldnt get an aspirate.. he said they tried hard! certainly felt like it after the fact..