dacogen

[Russ]

All, It has been 10 days since finishing the 1st round of Dacogen my counts were all down. PTL
I don’t feel bad. Doc will check again next Monday. My prayers for all you patients and caregivers. I saw about a clinical trial using valproic acid with decitabine – looked like promising results with MDS and AML. (MD Anderson Cancer center ran the trial,)

[Carl]

Russ,

Glad you are doing OK and hope it continues. My CBC this week showed I needed a Xfusion of 2 units of PRBC and a shot of Neulasta. Platelets and other were OK. Next CBC next Monday. I too feel OK except for additional fatigue.

The MD Anderson trial with valproic acid and Dacogen was interesting but too far for me to participate.

[Russ]

Carl, Hang in there. My prayers will continue for you. I needed the Neulasta too but will see what Doc says on Monday.

[Dottieb]

Carl and Russ, John went in yesterday for Dr. appt. His counts were as follows. WBC up to 8, gets help with neuprogen, red counts not moving up to fast 7.6 and another tx tomorrow, but the platelets have just zoomed to 289. Guess thats good, the Dr. was very happy. Next week will be the start of cycle #3 so we are hoping for some more good things happening. Dr. said I could let hubby get in the garden!!!! Dottie

[Carl]

That is great news Dottie. The trials show the most improvement after four cycles/treatments.

[Russ]

Dottie,
Thanks for the encouraging news. Hope hubby continues to improve.

[kristyk]

Hi 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!
Kristy

[Carl]

Kristy,

How long as your Mom been on the Decibine/Dacogen trial? 6 months or so?

It appears she has better counts than I have been having for the lqast 10 months, but I am looking forward to some improvements.

Continued good luck.

[kristyk]

Hi Carl

My mom was started on decitibine 11/05..immediately after the AML diagnosis was confirmed. At the time of her mds dx 2/05 dr said she would transform to AML within the year. They were right. Did not feel she would be good candidate for traditional chemo treatment. Although they did type her siblings early on ( neither good match) for transplant, they did not feel transplant was good option either. Decitibine at the time not approved for mds, only trials. She required periodic supportive care for those 9 months she was mds/ra. They, for some reason wanted her in decitibine trial once she progressed aml, so we knew all along that she would go into the trial once aml.

So she has been on decitibine for 10 months, with the 2 month break this summer when her counts bottomed out dangerously low. So after about 6 rounds she bottomed out..bad stuff gone, but so was the good..they said this was common effect..the severe neutropenic (sp?) crisis. During those two months she was off, she was hospitalized for about week..no wbc, small infection, couldn’t maintain platelets, red dived too. They gave her a break from the chemo and tried daily neupogen shots for about 6 weeks..it did nothing to raise wbc. Doc stopped neupogen and started the decitibine back..said she could not delay further and she needed to take the risk and hope counts would rise. They have. So we plug along. She is transfusion dependent though. Our hope is to get the need for those spread out again..Dr said she looks more like mds now as the aml was “morphilogically going into remission ” ( whatever that means!) because she did respond to decitibine so well. We’ll take it. Roller coaster!!

I would just advise anyone on decitibine to prepare for episodes of low wbc and platelet supression..the studies are revealing this to be common problem/side effect. Mask up in public and sty away from sharp items, falls etc!! The way I see it, the way to survive this side effect is to try to stay infection free and watch carefully for bleeding. Keep supported with transfusions. Typical protocl for most with these diseases..
take care. Good luck!
Kristy

[Carl]

Kristy,

Sounds like your Mom has really been on a MDS-AML rollercoaster but with the decitibine she seems to be getting some improvement if her Dr. says the AML is going in to remission (however temporary that may be?) As long as you can keep the more serious AML at bay the longer your Mom can be around for you to enjoy and for her to enjoy you-family.

I am with you on staying infection free and have had some trouble with WBCs & platelets prior to starting the Dacogen/Decitibine due to severe platelet depression by Revlimid in the early part of 2006. I finally got my WBC/platelets in the normal range before I started the Dacogen/Decitibine and now expect to struggle with those again along with RBC counts.

I try not to lose sight of the small gains and just learn to live with the negatives and praise the Lord that there continues to be drugs that come out we can take to try to fight this horrible disease.

God Bless you and your Mom.

[Russ]

Update on my CBC 2 wks and 2 days after 1st round
of Dacogen:
WBC 1.25; PLTs 48; HGB 9.6
(At 1 wk and 3 days after:
WBC 0.81; PLTs 13; HGB 9.9)
Carl: hope you are doing well – I’ll be doing my 2nd round starting 9/18.

[Carl]

Thanks for your CBC update Russ.

My latest CBC (+1 week after round one):

WBC=1.20
HBG=8.50 (xfusion 2 units PRBC on 9-6-06)
RBC=3.02
Platelets=61.00

[Dottieb]

Russ and Carl John is now into his 3rd day of 3rd cycle for dacogen. His counts were decent going in. After tx on Fri. his hgb was 9.2, wbc 13.6, (neupogen shot) plat 262. Tues. he started his cycle, Thur. count wbc 7.4 hgb 7.8, plat 258. I’m sure that by Sat. and last infusion, his counts will be down some more. Hopefully not as bad as last ime. Will keep you informed. It’s nice to be able to see what others are doing. For Kristy, I’m so sorry about your Mom. Any chance they can keep her on the drug. She seemed to do so well on it. Dottie

[Russ]

Update: Started my 2nd round of Dacogen this am. My CBC were all up (Amazing Grace and PTL)
My HGB did not change much from a week ago – 9.7 up from 9.6. The WBC was 5.3 up from 1.3 and
PLTs were 158 up from 48. All I had was a shot of Aranesp a week ago. Expecting a drop again but it was good to know the numbers recovered.
Prayers that all of you do well.

[Russ]

Carl, Finished my 2nd rnd of decitabine yesterday. After the 1st rnd I declined the neulasta because I was getting a CBC and seeing my Hemo/Onc after the weekend. Without the Neulasta my WBC came up pretty good before the 2nd rnd. When I finished this rnd, I took the Neulasta since it would be a week before another CBC. Wowie! I was miserable last night and same today. Ibuprophen helps but you can take just so much. What was your experience with Neulasta after your Dacogen?

[Author]

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