dacogen

[kristyk]

Janice..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?
Kristy

[Dottieb]

Hi, John, went and had two more units of blood today. WBC up to 2.9, HGB down to 7, PLTS. up to 77. It is now 2 weeks after his 2nd treatment. Keeping my fingers crossed. Everyone he sees remarks at how well he looks…little do they know. Oh well, you give me hope and lots of info. Thanks Dottie

[lynette]

Janice,
I am VERY happy for you and your Dad!!! Wow!! We have been cheering your Dad on–My Mom hasn’t has much success w/ Decitibine. Platelets are still a problem–needing transfusions. I have a feeling we’ll be heading back to NYP soon.
Take care
Lynette

[Russ]

Janice and Kristy, May the decitabine continue to work for your loved ones. It is good to hear some encouraging news and I will continue to pray for all. How about that, Carl?

[Carl]

Praise the Lord for this drug working for people and giving them hope and a better lifestyle. For those not yet seeing improvement on Dacogen it seems that the published response of at least two rounds is holding true. I still feel fine and look forward to improved counts.

[JaniceR]

Lynette: Your mom hasn’t had round four yet, right? It’ll start working for her too, I just know it will. She (and you) have been OUR angels in this fight.
Kristy: My dad feels and looks great (especially at week four)… that’s when he’s planning his vacations from now on. They’ll load him up with blood and platelets and away he’ll go! Week four, he doesn’t need to get anything… no blood, no platelets. Chemo week and the 2-3 weeks after he needs to get tx alot. We’re hoping now that they’re stretching out the chemo a bit, it will give him a little break at going to the hospital so often.
Carl and Russ: If dacogen started to “kick-in” ever so slightly with my dad (who has the dreaded chromo7 disorder… the worse one), it HAS to work for you guys!
Lucy: How’s your mom doing on it?

I will continue to keep praying and keep my fingers crossed for everyone!

Love,
Janice

[Russ]

Janice,
Thanks for the prayers – they really help. Wish I understood all variations of this disease.
My chromo is supposedly normal but still have those high blasts. It seems to me that the type of chromosome has little to do with whether the various treatments work. I’ve had 4 bmbs and each time a different pathologist has done the report and uses some different terms. Does anyone know where I can find what the lymphoid & myloid marker percentages mean? (I have all the cytometric reports.)
Many prayers for all,

[Carl]

Yes Janice, I know Russ and I are anxiously waiting for improvement in our counts.

Russ, you can try this medical dictionary to see if you can find out what your cytology reports really mean (to a layman). http://cancerweb.ncl.ac.uk/cgi-bin/omd?action=Home&query=

[Russ]

Thanks, Carl. Best wishes for success with Dacogen and God Bless

[lucym]

Hello All,
As of Thursday August 31st my Mom went 10 days w/out plt tx with a slow increase to 37. The doctor was quite shocked so we decided to go into the hospital on Sept 1 for the 3rd round of dacogen because we wanted to watch her plt counts because of the bleed issues she has had in the last cycles. Friday we get to the hospital and her plt count is 2. She has been fighting some congestion and laringitis (sp). She got 1 dose on Friday and started with the bleeding, we then found out they neglected to order the drug for the weekend and nothing will be delivered until Tues. (Don’t get me started) Anyway she had my brother plt yesterday (2 units) and today they are 79. She has needed 4 units of blood since Friday and is now on Oxygen and has a touch of pnemonia tomorrow we will see if the drug arrives and what we are going to do next. I am hoping it starts doing something.
Thanks
Lucy

[kristyk]

Lucy
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

[lucym]

Kristy
Thanks I am glad so many people are doing well on this drug. My Mom WBC was 8 on friday before her 1 dose of Decitabine. Yesterday it had dropped to 5.8 and today it was 9.5 so I am very confused on if this is good or bad.

I am wondering what pre meds your Mom (and anyone else taking decitabine)gets before she has the treatment? If you could let me know I would like to compare with what they do for my Mom. I just don’t understand why she has such a bad reaction.

Hoping tomorrow (I guess that should be today since it is 1233am) is a better day for all of us.
Lucy

[Russ]

Lucy, Regarding premeds, they gave me an anti-nausea and a steroid (decatron, I think) before the decitibine. After the 1st day the amount of steroid was cut back and am not sure if the anti-nausea was used every day. Hope your mom starts feeling better soon.

[JaniceR]

Hi: My Dad gets a steroid every time he goes for the chemo as well. He’s usually pretty yinged up that first week… gets ALOT of work done around the house with all that extra energy. He started round 4 today. His platelets came up on their own and the rest were all holding on their own. Of course, now that chemo’s going in, they will plummet again and next week won’t be a good week. He’ll be tired and feel “weird” (like he says).

[pierre]

Janice…I’m glad I checked out this thread…your news deserved one of its own!

This is wonderful news and gives a reason to hope to those who, on top of everything else, have to deal with a bad luck of the draw with regards to chromosomes.

Lynette–as you may guess I have a special fondness for NYP, and I sincerely hope your mother will have the same kind of results there she had the first time round. Are you thinking of doing ara-c/trisenox again (if that’s a possibility)?

Pierre

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