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lucym
MemberPatti,
I knew you would have the answer, thanks for the information, I am worried about getting from local shop perhaps not the right kind, they say there are 3 types but I will check out the websites and such.
Hope your MIL is doing well look forward to her next update.
LucyMemberWelcome Willie,
Just click on my profile upper right side, then edit profile and insert info into your signature.
LucyMemberWell today the doctor says there is no blasts in the bone marrow only in the blood. So now he does not think the leukemia is causing the fevers, they are going to do more checks on my Mom’s heart. Today her WBC went to 1.7 (up from .5 yesterday) Can anyone tell me if the fact that it is not in marrow only in blood is this good/bad or what? Considering her HGB was 7. something yesterday and she got 2 pints of someone elses blood how can there be any blasts in the blood. Any information welcomed.
Thanks
LucyMemberBritt,
The next time he has to have a plt transfusion be sure he tells them he wants the benadryl before he starts. My Mom usually takes tylenol too to avoid any chills/fever she has always had low platlets and reactions when she has transfusions.
LucyMemberHi Tracy,
My Mom progressed to AML from MDS in May 06, 5 weeks ago she was treated with 5 days of ARA-C and 1 dose of Mitoxantrone. Since she is showing blasts in her blood, on and off and her counts have not come back up WBC 1.3 today they have decided to try Mylotarg she got her first 2 hour dose today via IV, so far no side effects other than fever/chills (but she has had a fever for a while now) She is expected to get another does in 2 weeks. We were told we have about a 20% chance of getting into remission. As for the other drug do a search and you will see all the posts made about it, it has recently been FDA approved. Best of Luck.
LucyMemberJanice on May 4th she did 5 days of ARA-C and 1 dose of Mitoxantrone (blue chemo) so we finished treatment about 4 weeks ago. Her WBC is 1.1 today down from 1.7 but her plt were 30 today up from 1 yesterday and the HGB and HCT were also up with out transfusion. I don’t know if these chemo treatments prevent her from taking any other treatment. The oncologist wants to start her on a treatment of mylotarg, but I would like to see if we can go with the Dacogen.
Any information would be welcomed.
Thanks LucyMemberThanks for the info Janice, perhaps if we can somehow get my Mom’s PLT’s up we can try this. Glad your Dad is feeling well…..best of Luck.
Good Luck to you too Stephen! Please keep us posted.
LucyMemberHi Patti,
Happy Birthday to your MIL and many many more. I wish they would study chinese medicine. Yesterday after talking to my Mom’s oncologist he said many of today’s chemo treatments originated from chinese herbs. But with out scientific proof he will not advise any. I asked him just to look over the info I gave him on the supplements the naturapath rec. and told him I am only asking if he thinks they may harm my Mom not to endorse their use. Hopefully he will let us know next week.
Enjoy the day.
LucyMemberJaniceR,
Also can you tell me more about the treatment? Is it a shot? How many days over the next 4 months? Thanks LucyMemberJanice R,
What were your Dad’s counts when he started the Dacogen? Thanks LuctMemberKristy,
I understand where you are coming from, my Mom is in hospital now (4weeks)after doing chemo, counts are starting to come back, except for plt they are 2 she has been receiving them daily but can not seem to get them up. She also still is showing blasts in blood we are going to do another BMB next week but we fear no remission so no SCT. They are talking about letting her come home and trying a chemo drug mylotarg as an out patient 20% chance of remission. I am too concerned about killing all the good cells. Can you tell me what your Mom’s counts were when she started the decitabine? My Mom was in the hospital in January with a fever (started from urinary tract infection) it took a little while for the anitbiodics to work but they finally did their stuff so give it a little time. One thing you should also be weary of is fluid overload, my Mom is only 120 pounds and they overloaded her with too much fluids and her lungs filled, she need to be put on oxygen. Be sure she is moving around as much as possible, urinating frequently if they are pumping IV into her all day. If she is not putting out the fluid ask them to give her some lasix, the fluid overload was the scaryist part because it happened in overnight. As I said give the antibiodics time, tell Mom to keep eating good stuff even if she doesn’t feel like eating try just small meals. That is awesome news about the blasts but yes bittersweet. Much prayers for Mom, you and the rest of our MDS/AML families.
LucyMemberHi Lori,
Awesome news about your Mom, sounds like she is really enjoying her life. Can you tell me did your Mom have any Chromosome abonor. when she was diagnosed? I know she does not have 5q. But does she have any others? My Mom is 23 days into her chemo and numbers are not going up. Today results showed 7% blasts in the blood. Originally when she started they were 26% in the blood and chemo brought them down to 2-3% over the last few weeks but today we were at 7% and I am very very nervous we are not going to get into remission. I don’t think the revelmid will be an option because her WBC .3 and Plt 9. trying to get some more information because my Mom does not have 5q either.
Thanks……and God Bless you and your Mom.
LucyMemberHi Neil,
Funny you posted today on this subject I was planning on sending you a post to ask you some questions. My Mom started Chemo about 19 days ago, her latest BMB showed 32% blasts. They have been tx her with plt daily. I think they are having trouble finding some for her because they have been getting them from various blood banks out of our County. After tx her for 24hours straight they got her up to 66 but today they were down to 21. Her HGB was also pretty low last week but they gave her quite alot of RB tx and she is back up to 14 and holding. Her WBC is still very low .3. I remember you saying something about if you get too many tx you will built up resistance to all? Is that right? Then what do they do? We have not done any tx from family because we are hoping to do a SCT later this summer if we can get the AML into remission and I imagine we will do those tx then. Any further information you can give on platelets would be appreciated. Also that website you sent did not link can you tell me who the site was and I will google? Thanks LucyMemberGloria,
For the past 2 days my Mom has been receiving plt tx round the clock. She had to have her PICC line changed so they needed to make sure they got her count up, today it was 58, she also received many red blood transfusions and today her HGB was up to 14.5. She is feeling well and the diarreha is subsiding. When we arrived at the hospital her blasts in her blood were 26, last test showed 2. Of course the WBC is still very low 0.3 but we are working on that too. I hope and pray your husband will have an easy time. Be sure to take care of yourself. Your husband will be sleeping alot over the next few days be sure to get some rest too. Try to get him to keep eating small meals to keep his energy up and help flush out the toxins.
LucyMemberEngel & Fran M,
My Mom handled the actual Chemo transfusions (ARA-C (5 days )and something else (1 Day). She was eating and feeling weak but OK. Then on 12th day she started with severe diarreha that made her even weaker and not wanting to eat. We have had about 3 days of that, but today she is feeling a tiny bit better, eating a tiny bit. They are giving her red blood and plt tx almost constantly. I am going back to the hospital tonight and will let you know any count information or anything else I find. It is very scary but I keep telling myself and my Mom it will get better (it has too!)
Thanks Lucy -
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