Spoke to Mom yesterday
January 15, 2005 at 1:33 pm #3302
I am a VERY fact based person… Let me know the situation and I’ll come up with a plan to deal with it. So, I’m reaching out to all of you for assistance. Would also apppreciate any thoughts or experiences any of you have had or are having around progression of RAEB? By progresion, I mean signs and symptoms to look for, “markers”, or milestones–(improvement or decline to a certain level, what does that mean, etc?) I spoke to my Mom yesterday and she has finished her first round of Vidaza. Her first Hem said she had RAEB-t and I asked her to confirm that with the Hem she was then referred to for treatment. He told ther that she had RAEB and that it had not gone to transformation yet. Had a follow up with the doc who told her they will know after the first four treatments if there has been any effect. She also had her counts and they seemed OK, not too far out of range. Don’t remember the exact counts-got them while I was driving, but I remember that Platelets had gone up to 70 (from 61), and Hemoglobin had gone to 8.7, (from 10.1). She is also getting a cold. As I mentioned earlier, she has COPD to complicate things. I will be seeing her next week and have an appointment with the doc so hope to have more answers then. Any reaction to these numbers?January 15, 2005 at 2:48 pm #3303eveMember
after the vidaza treatment my dad’s numbers go down – sometimes to the point that he needs a tx – he was tx dependent before he started the vidaza and the treatments have allowed him to go for longer periods of time between txs – they have just decreased the strength of vidaza to see if they can stretch out the tx time even more
dad usually gets tx when his hgb dips below 9 and hct below 25 – but everyones threshold is different
has your mom had a bmb to confirm what stage of disease she is in – i believe that is truly the only way to tell
eveJanuary 15, 2005 at 4:35 pm #3304
Mom had a BMB right before Christmas and that was where she got her RAEB diagnosis. Her original hem told her that she would be better off with another hem who has more experience in treating MDS.January 16, 2005 at 1:26 am #3305Sad About DadMember
This is hard to deal with. The Hemo. even specialist have a hard time. Answering your questions. Because they really don’t know. Dad has this RAEB-2 since 4/2003. His counts have fluxed the whole time. One month the platelet counts would be 60,000 and the next month he would be down to 35,000. They could never tell us why. Right now all of his counts are normal except his white counts are 5 time what they should be. They say that he has 25 percent blast in his blood. That he is tranfering to Leukemia. But also his kidneys are shutting down. He has had three transfusions because of his cirrhosis and when they drain the fluid off his stomach his Hemoglobin drops below 8.
He is near death not because of the MDS REAB-2 but because of the cirrhosis.
He saw two hemo. before he found one that he liked the third one. The last one is from the Center of Excellence. His first hemo. said he had 6 months to live and the 2nd one wanted to rush him into the hospital and give a bone marrow transplant. They had a unrelated donor. Dad looked normal but felt tired most of the time. He slept alot. But that had a lot to do with both dx. Liver and MDS.
I wish you and your mother the best of luck.
This board has helped me a lot to understand what is going on with my father.January 16, 2005 at 2:54 am #3306NeilMember
Some discussion points for her doc.
With RAEB & RAEB-t the goal is to keep blasts from increasing and to keep them from getting to the peripheral blood. How? Drugs? low dose chemo? WBC control is also important. Don’t want WBC to get too high, yet don;t want it to get low enough where infection is a risk. Drugs?
The equipment used to measure platelets is accurate within 15000 0n counts between 50000 and 500000. When platelets are low the equip. leaves something to be desired. Takes a series of CBCs over time to find where they will settle in. My plts have been in the 10,000 range for several years. have had readings as low as 3000 and as high as 19000, but the next reading will be back around 10,000. IF she had a TX shortly before a CBC is it reasonable to expect plts to go down? Adding more volume to the blood supply will tend to spread the existing plts over more volume. Does this in effect dilute the platelets? They typically live about 5 days, maybe a bit longer in some. The prime consideration with plts is symptoms. Is there bruising, bleeding or petechiae? Some people can have low counts and be asymptomatic. Others can have plt counts in the 75000 range and experience bruising and bleeding. Takes a bit of time to see how all this trends over time.
I keep a chart and graph of my RBC HGB PLT and WBC for each CBC. Would add blast count for her. It is easy to see a trend if one is developing. My numbers go back 8 years. Gets cumbersome, but also have a yearly chart/graph to clarify the long range trendJanuary 16, 2005 at 4:59 am #3307Bob PMember
If you are a very FACT based person you personally will have a difficult time with this disease. It is different for each person. Each person responds differently to it. There are components of a couple of other myeloid diseases in each case. Sometimes even the specialists have a though time making a diagnosis. The treatments available also affect each person differently. Some times they work, sometimes only partially sometimes not at all and there is no answer why. As time passes the blood counts will go up and then down and up again. The disease is non-linear. The doctors have learned a lot about MDS these past few years but there is still a long way to go.
Bob…January 16, 2005 at 12:15 pm #3308
Bob, you have hit the nail on the head. She was just diagnosed on Dec 30th, and I have been all over the web trying to dig up info. I’m also in the pharmeceutical industry and have access to colleagues that I am able to speak with. I have found their “reality” to be the kind I can deal with best. I look them in the eye, ask them to do the same, and we chat. The biggest frustration I have experienced thus far with the general info searches is exactly what you explain. Variability, lack of specifics, and a sense that (especially on some of the sites geared to patients and families) they are talking “around” things and hoping we can draw our own conclusions. This board has been great. I’m going to know more the last week of January and believe me, will post here regularly. Thanks.January 20, 2005 at 1:33 am #3309B. GreeneMember
I wish there was some way they could keep a better handle on the progression business. I gather the only true way is the BMB which you can’t do all the time. We watch for changes in the blood morphology. Don’t want to see any blasts there. We are currently on a Zarnestra trial rather than the Vidaza and having some problems. I’m sure you have read the posts with the mixed results on the Vidaza which seems to be true on all the meds. You probably are in a better postion with the drug co. to find out the true results than the rest of us. Hope the V does its job and works. Barbra
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