might be takeing a different road

[billyb]

What have others seen as a time frame for thier platlet counts to rise (respond ) to therapy,sinse there the frist sign to see if your responding to treatment, when we started Decitabine 3 cycles ago Tinas Platelets we about 9 - ( 9,000 )... during these last 3 cycles they average around 4 to negitive 4..Thursday they were at 9 again..even though thats a rise, I dont feel that is a responce Doc says we will have to wait and see, we are going to do another bone marrow biopsy afer 4 round ( in 2 weeks ), HEMA staying ok ( around 24% - 26% ) only because were getting 2 bags a week...NO in crease in WBC ( been 1.3 - 1.5 for 2 1/2 Months ), my feeling is Decitibine is not working and have concerns about Induction Therapy do to prior and exesting cancer along with poor Risk Factors - Question is: How long do you usually wait to deside to try someting new? Doc says there are not alot of options and if Decitine dosent work we can try Induction - but warned us induction could kill her in the process of trying to help her.....LEUKEMIA SUCKS

[ssdavi71416]

You and Tina have been through so much. I hope that the treatment starts to increase counts. I am not familiar with the treatment for AML, but understand your concerns and frustration. I hope that you Tina and the Doctors will be able to beat the AML. Others on this site are much more knowledgeable so I mainly offer my support to you. Praying for you and Tina.

[DanL]

Billy,

I am really sorry to hear about your wife's struggles. I am not a doctor or researcher, but do spend an inordinate amount of time reviewing articles and research, mainly to find out what is being done to treat mds and aml.

To answer your question, typically response to decitabine is seen in 1 to 2 cycles in MDS, but there are cases where it takes 4 or more cycles to get the best response. Also, there are a lot of questions about dosing levels, including a lower dose for more days in the cycle - i think there was an article from the latest ASH conference that discussed this approach.

I am wondering if you have you gone to any of the centers of excellence for opinions or treatment options? There are a lot of clinical trials being run by a lot of good doctors and researchers.

If you haven't found other opinions and treatment options, I would probably start there.

Here are a couple of the interesting trials I have seen with decitabine in the last year.

http://bloodjournal.hematologylibrar...18/6/1430.full

https://ash.confex.com/ash/2012/webp...aper51351.html

[ssdavi71416]

Billy

I noticed you are in GA. I can highly recommend Emory for treatment. I have met several people that are being treated for AML. The Hematology group is very impressive. Again, best wishes and many prayers for Tina and You!

[Heather8773]

Y'all are in my prayers!

[billyb]

Originally Posted by ssdavi71416

Billy

I noticed you are in GA. I can highly recommend Emory for treatment. I have met several people that are being treated for AML. The Hematology group is very impressive. Again, best wishes and many prayers for Tina and You!

We are at Emory, we started going there 3 years ago for Breast Cancer..I think it is outstanding, Breast cancer Dr and AML Dr have the same first name ( that was a trip ) wouldnt go anywhere else.

[billyb]

Found out today Tinas blasts are not in the perenial blood any more...so I guess we are putting the breaks on the Leukemia a little, In 2 weeks we will find out how the marrow looks ...as long as there are no new numerical or structrial changes, we will be estatic, I still dont like the fact that her counts are still low, that concerns me. The longer there below normal the more of a chance of a complication ariseing. Well its good to hear some good news, We will ride it out as long as it will let us...Leukemia still sucks...

[Neil Cuadra]

Billy,

Even if you don't have an explanation for Tina's improved lab results, I'm glad to hear that the news was good.

[Cheryl C]

You and Tina are fighting a really hard battle and my heart goes out to you. So pleased to hear that the blasts have disappeared from peripheral blood. That's wonderful news.

All the very best to you both. If you find encouragement in reading the Bible, I would like to suggest Psalm 139:1-18 for your comfort.

[billyb]

Well counts are staying the same, floating between low and the high end of critical, I think my wife was super human in another life, she wanted to drive herself to treatment today, last day of 3ed round of Decitabine, will be getting another bioapsy on Feb 21st, if there ar no new changes ( we have 4 now I think ), that will be excellent, the pharmasudical companys need to step it up a notch and start some more trails for therapy related aml, since it is starting to beacome more common, my personal belief it is more a therapudic problem than genetics

[billyb]

I sent MD Anderson every thing they needed or every result I had as far as tests they would do to dertermine a BMT ( I herd and reasearched that they have peformed a few BMT on people with Leukemia and Soilid Tumors, but dont know of the results), they basicly told me to ask our medical team, or we could come to Texas and get treated by them....I dont know.... maybe they didnt want to hurt my feelings

[Neil Cuadra]

Billy,

You can read the M.D. Anderson transplant statistics yourself at the National Marrow Donor Program website. They have a chart of overall statistics as well as links (near the bottom of the page) for

• Survival statistics - Related Donor Transplantation
  
  
• Survival statistics - Unrelated Donor Transplantation

You can get similar statistics for other U.S. transplant centers here.

[billyb]

Damn Niel, I guess the dude I was talking to didnt have all his info in order, I kind of thought that anyway, sometimes I like grasping at straws, no wonder the Doc didnt tell us no, but Hell No, Anyway I get get these little moments through out the day when Im watching my wife do certain things, and I forget just how sick she really is. Man....... I love her

[billyb]

Well, we are putting off treatment for a week or two, Tina caught an infection and now has appendicitis, she is in the hospitol, we are treating it with antiboitics since her platelets are around 10, but we cought it early and things are going quite well. They said her WBC being low is actually helping

[Neil Cuadra]

Does Tina always get a private hospital room? Is she able to sleep at night?

Sometimes hospitalization is necessary when you need IV treatments or around-the-clock monitoring, but it can be the hardest place to get any rest.

[Lori Patrick]

Billy, My heart aches to read of your wife going through this. My daughter was diagnosed with metastatic breast cancer at the age of 27, one year after having her only child. She is on herceptin every 3 weeks and tamoxafen every day and it wipes her out. She is now 29 and has total body scans every 3 months. You and your wife will be in my prayers.

[billyb]

Thanks, for all of ya'lls prayers, Tina is doing better, they started her on a liquid diet ( 3 days no food or drink ) and work our way up to soft food to see how it passes. She might get to come home Monday or Tuesday. Niel, yes she is in her own room, so that helps, I think everyone has there own room, I think its a bone marrow transplant recovery floor, Just wanted to say thanks for ya'lls prayers...it helps....praying back at ya....Billy

[billyb]

Lori, sorry to hear about your daughter, we will be praying for ya'll...If the Herceptain ever stops working, get on TDM-1, it was a miricle for us, hardly any after effects, and actually shrunk some of the tumors, Tina had a couple on the ribs, hip, spine, she had 1 small spot ( about the size of an ereaser ) on the brain, but we did a procedure called - Gamma Knife, one treatment, and after about a year it was gone, the problem with hormonal therapys is they say ther not very caustic, but ill tell you from experience the long term effects of any ongoing treatment is not good for your body, thanks for ya'lls prayers and we will be praying for ya'll....Thanks....Billy

[Sally C]

Hi Billy,
I just wanted to say how blessed Tina is to have such a loving, concerned, caring husband. And she is obviously an extraordinary woman! I would think your love and devotion, along with everyone's prayers, will go a long way towards her recovery.
I wish you both well.
God Bless,
Sally

[billyb]

Well we are back in the saddle again...just finished a week of decitibane, since being out of the hospitol, we are chooseing to stick with the decitibane and supportive care it seems to be working....its a pain in the but going to emory so many times a month, but they have good coffee and hot chocolate....and its free...we are keeping on keeping on, counts still suck wbc 1.2 ....ANC 850...we are still kicking...love and prayers to everyone......Billy

[Lori Patrick]

Billy - Glad you are looking at some of the positives! (coffee/hot chocolate). It is good to be grateful in times like these. Hopefully you guys will continue to do well and that the counts normalize. Continued prayers. Lori