June 15, 2008 at 3:27 am #20888
My mil law is about to begin her fourth round of vidaza–two weeks late because of a ten day hospital stay that involved a bleeding eye, pneumonia, fever, etc. She was in pretty bad shape. The doctor and she want to go ahead with the vidaza even though she is still very weak and “feels horrible”–her words. On a cbc in the hospital beside “blasts” it said “4”. I guess this means she has blasts in the peripheral blood. Her red counts just went up for the first time this week. She’s gone down since beginning the vidaza and we don’t know if it’s the chemo, the aml, or a combination. Has anyone who’s had success with vidaza felt better after the fourth round? The doctor is going to reduce the dosage by 25% since she’s so weak. I know you all know the ups and downs of this–including wondering if what you’ve chosen is helping more than it’s hurting. I think she and her doctor feel she has nothing to lose.
By the way, this is relapsed aml. She had a short remission from induction chemo more than a year ago. Thanks.June 15, 2008 at 10:25 am #20889
My father just finished his fourth round of Vidaza as well. So far, no side effects but there also hasn’t been a positive effect either. His counts continue to drop throughout the Vidaza. It’s the lowest it’s ever been. We are hoping for a response but so far, there has been none.
For any Vidaza users, when did you start seeing a response?June 15, 2008 at 2:51 pm #20890
I’ve been wondering about you and your dad. Supposedly between the fourth and sixth rounds is the magic time if a response is to be had. It’s tough, isn’t it? My mil’s red counts are up for the first time in eight weeks, but her white and platelets are still very low. Who knows? It’s almost enough to drive you crazy!! “One day at a time” never had such meaning! Here’s hoping and praying for the good numbers we’ve heard about. Thanks for your reply.June 15, 2008 at 7:05 pm #20891
the “4” in the blasts column on the cbc reprort means that there were 4% of total counts that the analyzer couldn’t classify; doesn’t necessarily mean blast count.June 16, 2008 at 4:04 pm #20892
Thanks Jack, for the info. How do you know about blasts in the blood if it isn’t on the line that says “blasts”? Is there a separate test for them? Her regular blood counts from the dr’s office don’t list “blasts”, but one from the hospital did. I’m trying to learn about all this so thanks for the help.June 18, 2008 at 12:46 am #20893
the only positive way to check for blasts is doing a marrow biopsy. when blood blasts are listed, it could be blasts but also could be something else that couldn’t be id’d by the pathologist.June 18, 2008 at 3:04 am #20894
My mil had a bmb in November ’07 (eight months ago) and the blast level was 7%. She didn’t begin vidaza until March, and her counts had been dropping pretty quickly. That’s why we assumed the blasts might be in the peripheral blood. Also, to have a “complete” response to vidaza the blood has to show no blasts. A “partial” response has to show no blasts or a rise in all blood lines for a certain amount of time. We thought the doctor was checking the levels since she’s nearing the critical time frame in the vidaza treatment.
I know the simple thing to do would be “just ask the doctor.” It’s hard to talk to him in front of my mil. She doesn’t want to know much–especially anything negative. She’s so hopeful and can’t emotionally handle the possibility that it might not work. And he won’t say much without her being around–privacy issues, I guess. Only time will tell… It’s just very hard seeing her suffer so and wondering if the chemo is working.
I know you’ve been through the mill as well. Thank you so much for helping me better understand some things.
CarruthJune 18, 2008 at 12:13 pm #20895
remember, it takes at least 4 round of vidaza (about 4 months)to show changes. don’t understand your assumption about peripheral blood. what I do is wait until the doc is through with your mil’s exam & as he/she is about to leave, go out in the hall with him & speak to him privately. Usually the doc’s are around the area to “seek out” too. don’t be concerned about the doc’s time; your questions are important too. I use an electronic tape recorder to record conversations with the doc.June 18, 2008 at 3:03 pm #20896
Is it correct that as the blasts dramatically increase in the marrow they can get into the blood? From my mil’s rapidly dropping counts we assumed the blasts were increasing in the marrow and maybe were already in the blood. When she was first diagnosed AML, her bone marrow blasts increased from under 10% to over 25% in less than two weeks. This time her counts were dropping even faster. With all her symptoms (loss of appetite, weight loss, increased weakness, fatigue, and sleeping), we assumed the AML was progressing quickly. Her doctor indicated this, as well. That’s why he began the vidaza and is continuing it despite her weakness. I did catch him in the hallway at the hospital and he said if this treatment doesn’t work, it’s basically over.
We’re hoping the vidaza kicks in and she begins to show some dramatic improvement soon. She’s been hospitalized twice (just recently for ten days), had fevers just about every week, several falls and visits to the emergency room, stitches, etc. It’s been tough, especially on her. Hopefully it will all improve soon.
I read lots of info on blasts, etc, from Neil’s posts here on the forum. I certainly could be misunderstanding some of the details! Not hard to do.
Anyway, we’ll see. BTW, has anyone been keeping up with the college world series? Baseball? How ’bout those Tigers! I’m from Baton Rouge–needless to say we are big fans.
Again, please clarify anything I seem to be confused about. Thanks!
CarruthJune 19, 2008 at 1:34 am #20897Russ P.Member
My CBC shows the blasts as a percentage in the differential and all the Hemo/Oncs I have seen indicate they are immature cells.
BTW, Jack I replied to your private message.
RussJune 19, 2008 at 2:11 am #20898
Hang in there Stacey. Keep us updated with mil’s progress. I will let you know after dad’s Friday appointment. Given that he has already went through 4 cycles, maybe there will be an improvement in his counts. Like I mentioned before, so far, no response.
As for blasts, I can’t really contribute towards anything. My father’s CBC’s never revealed any blasts, nor his BMB which was in Jan 2007. I guess we could do another BMB in the near future, but our hema just said that don’t rock the boat if you dont have to. Given that there hasn’t been a drastic change in dad, hema is suggesting that we try to stay away from BMB as long as possible. Dad is happy with that because the one and only BMB he had, he had a horrible time , not to mention painJune 19, 2008 at 8:08 am #20899Alice SParticipant
Just a thought, my mother had much the same symptoms as your MIL, with hindsight I think she had jaundice – 17 years ago my husband was in much the same shape which is why I suspect this. Doctors just shrug their shoulders.
Problem with MDS is that it is so difficult to distinguish even a common cold from MDS and thus proper treatment is not always given. (My two cents worth.) Hematologists are sometimes only focussed on the MDS and blood works and seem to lose the big picture. Mom went from 57kg down to 47 in a month, could not eat and so on, but is now home after having spent a month in hospital, eating again and very positive.
Hi, I have a draft on my computer which I started last month, but have not been able to finish. Please keep us posted on your father. Mom’s doctor is now talking Vidaza, Mom at 47kg and rock bottom blood counts wants to know nothing. Will suggest steriods to boost counts, seems to work for quite a few people on the forum. Sure there are risks but for mom it doesn’t matter, they almost killed her with a platelet transfusion last month! Special platelets they called it! Shes now refractory to all platelets, and her white never rise above 0.8. Tx every two weeks now.
Take care & keep in touch.July 29, 2008 at 4:32 am #20900
How is your mother in law? After 4 rounds of Vidaza, it has not helped my father at all. Although we expected his counts to drop with the Vidaza, his counts haven’t fully recovered. We have put Vidaza on hold. In a way, I wonder if Vidaza made my father’s condition worse… Today for the first time, we found a horrible large purpose bruise right beneath his right arm. It looks like a perfect circle. It’s quite odd because the circle is so perfect. Anyone have experience with this? His platelets 1 week ago was at a 55.
How are you? I haven’t heard from you in awhile. How is mom? How’s her appetite? She’s a fighter…! Has mom started Vidaza?
This whole MDS jorney is horrible. I wish we can just go back to our old lives but I know it is wishful thinking. We’ve tried juicing, vitamins, organic foods… and nothing has worked. We’ve also tried Procrit, Revlimid, and now Vidaza. It looks like we’re off to Dacogen next. WHat to do when no chemo works? Just wait and see and continue with the transfusions? It’s just so unfair that the only cure is a BMT, which isnt even an option for my father because of his age. Ever since we’ve been hit with mds we’ve tried to live our lives as normal as we could… but nothing is normal… nothing will ever be the same…. instead our lives are consumed with hospital visits, blood transfusions, refills of exjade, not to mention shortness of breath and fatigue…
I’m sorry, today is just one of those days I just want to vent….i dont know who else can understand this whole mds ordeal besides those going through it..July 30, 2008 at 12:09 am #20901
I’m so sorry your dad hasn’t responded. My mil just finished her fifth round last week and is doing a little better. Her counts haven’t really improved, but she’s not having constant fevers and hasn’t been back in the hospital since the last round. She’s also gained some weight back–she was down to 112 from 137. I guess vidaza is working, but we won’t really know ’til the bmb in a few weeks. Her counts yesterday (7/28) were wbc 1.0, hgb 9.4, hct 26 and platelets 9. She’s still getting transfusions about every two weeks, give or take.
She’s still very weak and doesn’t go anywhere except the doctor’s office with someone driving her. But, she can wash a few dishes and putter around the house with her fancy walker. So for her, it’s an improvement from the last several months. Her counts haven’t gone up on their own, however, so I guess the next few weeks will tell. We’ll see…
The vidaza dosage is still reduced and this time he waited five weeks in between rounds instead of six. You all know how it is, you’re afraid to say yes it’s working. But for today, she’s alive and kicking!
I know how hard and frustrating this all can be. Life becomes about bloodwork, doctor visits, transfusions, etc. I’m trying to do a good job handling what God has put before me. We don’t understand it, but it’s what we’ve been given.
Has anyone read the book “The Shack”? Kind of strange, but interesting at the same time. It gives somewhat of an eternal perspective.
June, has the doctor recommended dacogen? From everything I’ve read, my mil’s doctor should have stopped the vidaza long before now, but he hung in there. And she has gotten better. Maybe go through with the fifth round if that is when the change happens. Who knows? I guess each patient and his/her doctor have to decide.
Hang in there, June. Let us now what you guys decide.
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