dacogen

[Dottieb]

Hello, I am new to this list although I have been reading your letters for about two weeks. My husband has recently been put on dacogen and is having a tough time with counts. I believe two people on this forum have someone who has also been put on this drug. I am looking for some feedback if possible. This is an interesting group and I have already learned much. Thank you.

[Russ]

Hi, Just went through 1st 5 days of Dacogen. Except for low HGB my counts were up to start – will get a CBC tomorrow and see what happened to the counts. I’ve been told it is normal for Dacogen to depress the WBC – they wanted to give me a Neulasta my last day but decided to wait for the CBC. Will keep you posted.

[Carl]

Dottie,

Russ is a week ahead of me, I just started today. My RBC and WBC counts were already somewhat low today, so I am getting a RBC transfusion this Wednesday and will receive a Neulasta injection this Friday. The Oncologist has told me to expect my counts (RBC-WBC-Platelets)to go down at first then start to recover slowly.

How long has your husband been on Dacogen? What is his diagnosis?

You have found the right place for questions about MDS, treatments and most important of all…someone to listen and understand.

Hope your husband’s counts improve and God Bless.

[Dottieb]

Hi Carl I’m not very good on the computer, so please bear with me. My husband has just finished his 2nd round of the drug. His counts are very low..hgb 6.7, wbc 1.1 platelets today were 6, yesterday they were 40. He was in the hospital a few days after the first round, an infection set in. Today he had platelets and blood transfused also a neupogen shot. His platelet count did very well after the first round and actually 190, others went up, but not very much. We will see. Thank you so much for your reply.

[Dottieb]

Dear russ, Good luck on this journey. I have posted a note to Carl, pretty much with my husbands story. We will go in for a blood check on Wed. to see if the transfusions have had any effect at all. Have to admit I am really getting nervous. Dottie

[kristyk]

Dottieb, Carl and Russ
Hi. I wish you all well on the Dacogen. My mom will be going on round 9 in a few weeks. She started it in November. Had to take a 2 month break due to low counts, but is back on. Doing well, however counts do stay low. She needs blood tx about every 2 weeks now. WBC is starting to improve..running 2.2-2.8 for past few labs which is GREAT compared to having none a few months ago. Platelets have been kept very low…needs tx 1x per week..can’t get above 40 and drops daily.
She feels fine though and has no ill effects from the drug. She has AML which transformed from MDS.

I wish you all well with the drug. I feel it has greatly helped my mom..and is keeping the leukemia at bay for the time being which is a blessing.

best to you all
Kristy

[Russ]

Carl,
Hope your Dacogen experience goes well – in the short term, I was pleased that it seemed preferable to the Vidaza I was on before. My CBCs on 8/21 before Dacogen were WBC 10.37; HGB 8.7; PLT 237 (The WBC and PLTs were unusually high for me) By 8/23 WBC 4.88; HGB 8.2; PLT 209. I did not take the scheduled Neulasta shot on Friday deciding to wait until today’s test. Had 2 units of PRBC on 8/24. Today my WBC 0.98; HGB 11.6; PLT 89. I’m pleased with the numbers as the low WBC was expected – will see Doc on Tues. next week and get a Neulasta if the WBC doesn’t improve. Keep us posted on your treatment.
Prayers and best wishes,

[Carl]

Russ,

So far so good for two days of treatments. I’ll get another CBC done this Saturday to see if I need a shot of Neulasta.

Ill keep you posted.

Carl

[Dottieb]

Carl, Russ and Krysty My husbands cbc was a little more encoraging today. Not grreat but going up. WBC was 1.7, RBC 7.5 and platelets up to 24. Never thought I would think that as good. Will get another tx on Fri. and CBC. Am making folders on you guys so that our doc can kind of follow along..Till next time Dottie

[Russ]

Dottie, hope your husband keeps improving.
Kristy, your mom appears to be doing better on Dacogen which should be an encouragement to Carl and I who are just starting. Fortunately, I feel better than my bmb indicates but there is that worry about progression to AML. My prayers to all of you. God Bless

[kristyk]

Hello guys
Just fyi, for mom, it took about 3 or 4 cycles for blasts to decrease. It has been so long ago but I believe at the time she was officially told the MDS had progessed to AML in Nov she was above 30% in bone marrow. She has biopsy every 2 months. In May no excessive blasts indicated, same in July. She is due for another BMB this month. We are curious to see how being off the drug for june and july may have affected things. Labs cont to improve ever so slightly. Her wbc was almost 4 today ( has not been there for 8 months ) and her reds are holding a little longer each week. Platelets remain tricky. She starts round 10 sept 11. In june/july her counts dropped so much that her participation with this drug was questioned. Her Dr really pushed for her to carry on with this. He felt sure her counts would start to recover on their own..and by gosh they appear to be doing so. In our last consultation w/ him 8/1, he mentioned a remission as possible..he had NEVER mentioned that word with my mom. Hope does float! We’ll see. Hang in there guys. Keep posting your experiences..it does help.
Kristy

[Russ]

Kristy
Exciting news about that remission word. I’ll pray to that end. Regarding the platelet thing that I tried Coenzyme CQ-10 and it helped for a few weeks. Later did fresh pineapple and it also worked but only for a few CBCs. Platelets are tricky – it seems mine will be low then jump way up in the 200’s but only for awhile.
Best regards and wishes for your mom.

[Carl]

Kristy,

That is great news about your Mom’s counts starting to improve due to the Dacogen/Decitibine. I finish my first dosage round today and look forward to some improved numbers too.

[JaniceR]

Hello All: I have some rather exciting news. The results of my dad’s BMB after three rounds of Dacogen are in. It has, indeed, eliminated more blasts and it is reversing the chromosome 7 abnormality. That’s something we all thought was impossible due to the drug-resistant attributes of chromo7. The doctor’s are now giving him dacogen every fifth week instead of every fourth because that extra week (week four) all his numbers come up ON THEIR OWN! Of course, they get pummeled right back down while on the dacogen and for three weeks after, but the fact that on the fourth week his own bone marrow kicks in and starts producing good cells is very encouraging. Platelets are still a concern since they don’t get above 40, but his HGB is up and he’s feeling great. And he can travel with this schedule. We are very cautiously optimistic at this point. Lynette… are you out there? How’s your mom?
-Janice

[lucym]

Janice and Kristy
Awesome news for your folks, may it continue to only get better
Lucy

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