disqualified to cont decitibine, blasts back

[kristyk]

Totally shocked. mom went in today to start round 9 of decitbine and was disqualified..blasts in blood 64%. 62 is cutoff for study. 6 weeks ago she was at 0. Leukemia back. News not good. I was not there today for consult, thinking things were going along good enough. She was presented with several options. A new drug called Saha?????anyone heard of that one? Another trial, only 5 have tried it, only one still on it. People don’t do well. Oral pill, tons of side effects. Not a cure. Don’t know a thing about it. Option 2 is induction. Option 3 is induction plus another med. Doctor wants her to try the saha. First has to have chest xray, ekg, lots of blood work prior to qualifying. Head is spinning. She was on the rebound. WBC was climbing, now we see that it was the leukemia coming back.
Decitibine had been working so well. My heart is heavy. The blasts are so high, can’t imagine what the BMB blast number will reveal. I’m heading to St.louis tomorrow so i can research this thing and speak to the team. Very scared. Wish I could continue to report good news. She has to move quickly on decision..

Kristy

[Carl]

Kristy,

Since your Mom was on a trial, can’t you get your local Hemo/Oncologist to get your Mom on Decitibine and pay for the drug (through medicare/insurance?)

If she was doing so well but her blasts were increasing that is what I would do.

[kristyk]

Carl
As far as I know decitbine not FDA approved for AML. I do not believe this is option. I will check to see if there is some “mercy” option for staying on the decitibine.

Thanks
Kristy

[lucym]

Kristy,
Sorry the news is not good, I am sure you will find the answer to your next step.
My Mom was on the decitabine not thru trial. Was your Mom getting it every 28 days? Is the 64 % in her bone marrow or blood? I would see if you could get another round thru insurance and give yourself a little time to research and not make a quick decision. I still regret that my Mom was diagnosed with AML on a Wed she was put in hospital on Thursday and chemo started I never got to do my own research about which treatment. From what I have since read mostly everyone gets ARA-C with another drug, I would like to know all the options for the other drug they add.
Praying for you all
Lucy

[lucym]

Kristy,
Sorry I reread your post, it is in the blood. Have the doctors said anything about Vidazza? My Mom’s doctor was torn between which to give her. Be sure to ask all your questions. Keeping good thoughts for you.
Lucy

[Russ]

Kristy, Sorry to hear about your mom’s problem with Decitabine. Here’s what I found on SAHA:
SAHA and FK228:
The prototype HDAC inhibitor used for in vitro study, trichostatin, is an hydroxamic acid. To date, the only hydroxamic acid under clinical investigation is suberoylanilide hydroxamic acid (SAHA). SAHA has been developed in both intravenous and oral formulations.38 Clinical administration has been associated with induction of histone acetylation. No data are yet available detailing the impact of SAHA on myeloid malignancies. Found the above in “Hematology” at: http://www.asheducationbook.org/cgi/content/full/2003/1/176

Prayers for your mother.

[Russ]

P.S.: On the 3rd day of decibine my CBC showed 31% blasts in the blood. A couple of CBCs after that showed no blasts. My Doc says he would recheck this on my next round to see if the blasts go up again. Hopefully they will give your mom another test. Best wishes for you both.

[kristyk]

Russ thanks for the info on Saha. I will try to make heads and tails.. That is interesting about your blast counts fluctuating like that. I will certainly throw that out there. But am afraid the protocls for trials are very cut and dry..I think she is out. They did mention staying on decitibine as mercy effort, but the cost would be $2000 per month. Not having FDA approval for AML dx would rule out insurance coverage we think. Something yet to find out for sure. She goes in friday for tests to see if she will qualify for the Saha..chest xray, ekg and BMB. Next week once results are back we will get audience with the doc and ask questions and go from there. Mom’s thoughts are to try saha and stop it if she starts feeling bad. She is terrified of the “big” chemo as we call it…but keep it open. I think all fear she would not survive the big one. On the other hand she has tolerated meds pretty well since this started.
Lucy and Carl thanks also for your input and prayers.

We shall see. In the meantime, ironically, she has gone almost 2 weeks w/out platelet tx and about 2 weeks since blood. The best that has been since this past spring. Feels fine. Can you imagine. This is perplexing disease.

Kristy

[lynette]

Hi Kristy,
I’m sorry to hear about your Mom. Not only do I know how you feel, I’m living it. My Mom relapsed in June–she was put on Decitibine. No improvements in count at all. In fact, she was worsening, but she felt ok. Her only option was induction. My Mom is 75 yrs, however, she was very healthy. She was admitted to NYP and has begun induction. The first BMB showed that most of the leukemic cells were gone. However, since there were a few left, her doctor recommended a second round immediately. She received traditional 7+3, now she is getting 5+2. Risks are high due to the fact that she presently has low counts. However, no other option. If we wait, leukemic cells will win out.(Blasts were 87% in blood when we began). It is a difficult decision, but for my Mom- she wanted to fight and achieve remission again. My Mom is 10 years older than your Mom, but the induction was the last resort for her.
I know how scared you feel–stay strong.
Prayers and good thoughts,
Lynette

[kristyk]

Lynette
I hope your mom is doing well. I know what you mean about induction, is scary. My mom is in good health otherwise as well. Never had any health prblems until this thing pooped up on blood work. However, by chance in June they did find that she has enlarged aortic..annyersim, i know spelling is wrong! Anyway not a darn thing they can do about it given her condition. That is only thing that concerns me about induction or any treatment as I know it does stress heart.
Part of me wants to just go for the induction and stop this trial stuff..I would hate to try yet another something that does not work and then approach induction as last option when counts are really supressed from all of the other stuff.
It is her decision though…I would love to hear updates about your mom as we may be facing same. My mom is fighter..great attitude/outlook regardless of what happens…I think she is ok with still fighting this. She has just been so fortunate in that except for a few bumps in the road, she has not felt bad with this disease.
My prayers are with you guys. I’ll let you know what we end up doing, as I’m sure next week we will be starting something.
Kristy

[Bkwits]

Hi Kristy,
I am so sorry that your mom is having more problems. Where is she being treated? I am originally from St. Louis, and have been there several times this year. In fact, I just got back from Sullivan,MO where my mom was in the hospital. She doesn’t have MDS though. Take care. I’m am sending positive thoughts and prayers your way.
Barb

[kristyk]

Thanks Barb for well wishes. My mom is being treated at Siteman Cancer Center which is at Barnes Jewish Hopsital/ Wash U school of medicine. The cancer center is located mid town off Kingshighway. I am so sorry to see that your Joe passed. Prayers your way as well.
Kristy

[Bkwits]

I had thought it was probably Barnes. Siteman is a Center of Excellence for MDS. I have visited family members at Barnes several times. Take care.Go Cardinals.

Barb

[Russ]

Kristy, Today I brought up the high blasts in the
blood again to my Hemo/Onc. He casually commented that the Dacogen pushed the blasts out into the blood from the bone marrow. It seems that would be a good reason to recheck her numbers (blasts) in blood and marrow to get her back on decitabine. What is “induction” mentioned by Lynette and you?
Prayers,

[kristyk]

Russ, thank you. I will throw that theory at my mom’s oncologist. We should get results back from friday’s BMB. As a note, her labs continue to improve. Platelets going up, no tx for 3 weeks. Red going up too. WBC is going up too quickly though..17 plus, an indicator that things are not as good as they appear.

Induction is that big heavy chemo that is standard therapy for AML and Some MDS.. called citerbine, or something…it’s the one where you stay in hospital for a month, wipes out everything in bone marrow ( and the person) in hopes to get it all. Then they do consolodation chemo cycles after that depending on need. Often does not go so well for older adults..tough stuff to get through for any age.

Again thanks for your input..really helps

Kristy

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