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kristyk
MemberHi all
Mom starts round 9..or is it 10..on Monday. She has had 6 weeks off. wbc at 6, not been there since this time last year, climbing on its own. Hgb was 9.9 tx this past tues, platelets holding at 36, no tx for about for about 10 days, good for her as of late. These were todays labs. She has been so sketchy for past few months with her #’s that she’s gone to hosp for labs each weekend. Looks like she gets a break this weekend as things look good enough to hold until monday. Expect counts to drop after chemo next week. Still we feel she has really rebounded here lately. Staying positive. She feels fine otherwise, tires easily but lives pretty normal life. Hard to believe we are approaching the year mark for the AML diagnosis, 19 months since the MDS diagnosis. My guess is they will do BMB in a few weeks..hoping blasts are still gone or way down.
Thinking of you all..hope your treatments go smoothly this month!
KristyMemberOh Lucy. I am so sorry to hear about your mom. My thoughts are with you tonight, and you family. She did fight a brave battle. I am glad she is free of AML/MDS now. Again..hated to see your post. so sorry
peace
kristyMemberLucy
I am really thinking about your mom. I hope she starts to feel better very soon. How is her wbc?Dottieb..I hope John is doing good,
kristy
MemberJanice..SUPER news!!! My mom can’t seem to shake getting over 40 w/her plts too. Interesting that you say that about 4th week…my mom’s count have been on the upswing this week and it is indeed week 4 for her. She is now doing every 6 weeks. I am so excited for your Dad. Is he feeling well?
Lucy, how is your mom this week? I know she has had rough time. Do you know yet if the drug looks to be working for her?
KristyMemberTerri
I am really praying for Bob. Are they giving him plt transfusions? You are in my thoughts.Kristy
MemberHello guys
Just fyi, for mom, it took about 3 or 4 cycles for blasts to decrease. It has been so long ago but I believe at the time she was officially told the MDS had progessed to AML in Nov she was above 30% in bone marrow. She has biopsy every 2 months. In May no excessive blasts indicated, same in July. She is due for another BMB this month. We are curious to see how being off the drug for june and july may have affected things. Labs cont to improve ever so slightly. Her wbc was almost 4 today ( has not been there for 8 months ) and her reds are holding a little longer each week. Platelets remain tricky. She starts round 10 sept 11. In june/july her counts dropped so much that her participation with this drug was questioned. Her Dr really pushed for her to carry on with this. He felt sure her counts would start to recover on their own..and by gosh they appear to be doing so. In our last consultation w/ him 8/1, he mentioned a remission as possible..he had NEVER mentioned that word with my mom. Hope does float! We’ll see. Hang in there guys. Keep posting your experiences..it does help.
KristyMemberDottieb, Carl and Russ
Hi. I wish you all well on the Dacogen. My mom will be going on round 9 in a few weeks. She started it in November. Had to take a 2 month break due to low counts, but is back on. Doing well, however counts do stay low. She needs blood tx about every 2 weeks now. WBC is starting to improve..running 2.2-2.8 for past few labs which is GREAT compared to having none a few months ago. Platelets have been kept very low…needs tx 1x per week..can’t get above 40 and drops daily.
She feels fine though and has no ill effects from the drug. She has AML which transformed from MDS.I wish you all well with the drug. I feel it has greatly helped my mom..and is keeping the leukemia at bay for the time being which is a blessing.
best to you all
KristyMemberHi Lucy
Sorry to hear that your mom is back in hospital. It is intersting that my mom had some pain and tingling in her ankle and foot area. It was her left foot actually. That started after a few cycles of the decitibine. She thought it was nerve damage from a really bad bone marrow biopsy she had back in November when they hit a nerve. They have had her on neurontin since and it has gone away. But I wonder if it really is more related to the drug side effect or something. I think I have heard of other people reporting numbness and tingling in feet and leg area. I have also heard of people reporting leg and bone pain when they take neupogen because it is the bone marrow trying to get workinng again, “growing pains”. I am still trying to get a grasp on the ANC too, it is the absolute neutrophil count which makes up that wbc number. It’s the good cells that are healty and capable of fighting infection. I’m not sure how they calculte that. A prson can have a good wbc number but still have poor ANC, which is why the wbc number can be deceiving sometimes.
Hope your mom is home soon.
KristyMemberPatti
I hope things go super smooth for your MIL.I have a question. What is the difference between PICC and Port. My mom has a hone( not sure of spelling..is that a PICC??? Curious
Take care
kristyMemberTerri
I am thinking of you both. Hold tight! It is a roller coaster. My mom and were having a moment of “slap happy” giggles the other day while waiting to see the doctor. We have nothing to compare this too as she is the first to have illness in the family, but we were talking about what a HIGH MAINTENANCE illness this is…she says its a full time job! Again, hope things go well with treatment and things improve.
KKMemberHello all
Thought I’d update on my mom and the decitibine. Sounds like more and more folks are giving it a try. My Mom has had a 77 day break from the treatment because after 7 cycles her counts hit the bottom.Ironically, in May her BMB showed no blasts but her whites got really low and she went into hosp for about a week in June. They have delayed treatment since then in hopes her counts would recover and started her on neupogen shots, which she did for almost 6 weeks, without significant improvement. Her July BMB still showed no blasts. However for the past few months she has needed something every other day it seems..blood at least once a week, platelets every few days. Her WBC is still around 1.2 with hardly any ANC to speak of. Nothing has been holding. Yet she has been ok..not sick and in good shape! So they have decided to get her going again and she started cycle 8 monday. We saw her doctor Monday and he feels it best to push on through. He stopped the neupogen and wants to reserve it for only if she gets sick again with fever etc. He said that her bone marrow looks more like it did when she was MDS or pre-leukemic, which is good.( at least better I think!) He is dissappointed that her counts did not recover with the long break. However said that in his study, some people have been having “wierd” stuff happening around cycle 10 ( he actually used the word wierd!) It appears that about 3 0r 4 people have had late response in cycle 8-10 and are in remission. He said these folks had counts suddenly shoot up after being very low for long period of time. He said that this “late bloomer” effect was not expected but GREAT. So I thought I’d pass that along for whatever it is worth. This is new news.. last time we consulted with him the word was that people stopped responding after so many cycles. So they are learning more and more with each month. And as you all know, everyone is unique in how they respond. I found this encouraging. Our trick is to stay well during this low count time and hope hope that my mom will be one that has this odd effect happen in a few months. He did decide to have her go every 6 weeks vs every 4 for treatment witht the dectibine.
Hope is out there! Hope you and your loved ones are doing well with this…please keep posting. I will share whatever I learn too.
Best to all
KristyMemberLucy
Yes please have them check her for internal bleeding. This is what happened with my mom back in November. She was bleeding in her abdomen and until they did a scope and fixed it, she was losing red blood…kep getting transfusion afer transfusion with numbers that kept fallling. Finally shared that her stools had been dark and she was in so fast for that scope. With plts being so low, bleeding can just happen. Please have it checked! Good luck
KristyMemberLucy
I took 2 cycles for my mom to show reduction in blasts, and it wasn’t until 6th that all blasts were gone from bone marrow and blood. Hoping for better #’s for your mom soon. I will keep you all in prayers.
KristyMemberLucy
Try finding the website for Siteman Cancer Center. I think that site does list all studies in progress and have contact info. The main Dr. for MDS and Leukemia is Dr. Dipersio. I want to say that he said that there are only two studies for AML/decitibine currently available in the world and I think the other is in germany. Not sure of # of people enrolled in st. Louis. and not sure how many are MDS transformed to AML patients. I see them tomorrow and will ask.
Good luck.
KristyMemberHi Lucy
My Mom has not had any diarreha side effect but then I guess everyone is so different. Her only side effect has been the low counts. She always felt just fine during the week of her treatment and so on. Just a little more Info I found out recently about the drug. According the the fine folks in charge of my mom’s care in the decitibine study, they are finding that the few who do respond start showing leukemia return after about 12 cycles. Then again there are some going on thier 20th some cycle. Where we are at they are puting those people who stop responding on another study drug, an oral called Saha. Don’t have much more info but thought I’d share what I am hearing. As for my mom, her counts are still very low and neupogen does not seem to be doing much to raise her neutrophil. She is still very neutropenic. They gave her two week delay in the decitibine but is supposed to start again ( her 8th cycle, we think bone marrow is still clear ) this Wed..unless they don’t think she is up to it. Then I don’t know what. However she is home and feeling pretty ok.
Hope this works for your mom. I will be thinking about you both. I still think this drug has extendend my mom’s life by far…and still hopeful it will extend some more.
Kristy -
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