Unknown % of Blasts?

[LynnI]

Hello,

I have had 5 BMB since Feb of 2008, dx at first with MDS/MPD Unclassifiable, however my MDS doc says the MDS is in the forefront over the MPD and he has classified me with MDS RA. I have been tx independant since July 2008 after starting treatment of Valproic Acid, with my counts all normal, except for one very fast and steep crash recently. Prior to treatment I was receiving tx's every 3-6 wks. We started the VPA again and I responded immediately, within a month my HGL is back up into the 130's!!

Everytime I ask my doctor what my blasts are he says he doesn't know or shrugs his shoulders and dismisses the question. Other than to say they are below 5% and to not worry. I fully understand that I am extremely fortunate to be doing so well and on such a minor treatment with no side effects. And I feel quilty complaining or even posting this when so many are battling this disease on a far more serious level than I am.

I really like and trust my doctor, but I do find this frustrating. Especially when everyone on the forums knows what their blasts are. I want to know, if they know, its my right.

Is it possible that after so many BMBs, that they don't know? Or do I need to push harder for an answer?

I am going in next week for another BMB, this one for research purposes. My last one was in the end of Sept which showed no progression in the disease.

Thanks in advance for any input or advice. I hope everyone is doing well.

Take care,
Lynn

[tytd]

Lynn,
Just ask your doctor for a copy of your most recent BMB report on your next visit. It should have the %blasts in there. Generally it's good if they are less than 5%. Have you had any side effects from valproic acid? Thanks tytd

[LynnI]

Hi Tytd,

I do have the results of some of my BMB's, but it doeesn't have the blasts listed. I don't know if they are giving me a modified copy or what.

The only side effects from the VPA is some weight gain and after being on it for 6 months my HGL counts when too high and continued to climb. I was up into the 170's when treatment was stopped.

Thanks,
Lynn

[Chirley]

Hi, I have the same problem. None of the doctors who have done a BMB have mentioned blast counts. The only reason I know they were 4% was because I requested the written bone marrow report. Even then, the doctor ignored me. I ended up throwing a bit of a tantrum about my right to know and then I was given a copy of the result. Out of all the BMBs I've had, that was the only result I've ever been given. That was back in 2004. No results given to me since then. I've only been told the bits that the doctor thought pertinent.

I've decided not to create any animosity with by current haematologist by asking for the report and to trust that he will tell me anything that is abnormal.

I hope my trust is not abused.

Chirley

[Neil Cuadra]

I don't understand why some doctors still resist giving us our own medical information. I've never liked the idea that doctors should "protect" patients by hiding information from them, if that's the motive. If patients want to know the details, even though they might not be able to understand all the medical language, I think that should be their right at any treatment center.

Asking the institution rather than the doctor might be the easiest path to getting copies of test results. But I think patients do better in the long-term when they and their family are partners with their doctors and understand what's going on. In my eyes, the best doctor to have is one who shares results, explains results, and answers all of your questions, including the basic questions of what's wrong with you, what should be done, and why.

[LynnI]

Originally Posted by Neil Cuadra

But I think patients do better in the long-term when they and their family are partners with their doctors and understand what's going on. In my eyes, the best doctor to have is one who shares results, explains results, and answers all of your questions, including the basic questions of what's wrong with you, what should be done, and why.

I absolutely agree, this one of the reasons why I find it so frustrating. With the exception of telling me what my blasts are, he is great. He is never in a rush to push us out the door, always takes time to answer questions/concerns without talking above our heads etc. If I call his office, his assistant sees if he is available to take my call and he often does. He has also called me at home, between appointments to inquire to how I am feeling. He always wants to know how my family and I are dealing with the emotional side of everything. If we can just fix this one little thing about my blasts all would be perfect.

I am going to push for the results come hell or high water I will know.

Thanks,
Lynn