Dacogen Timeline

[steve_ky]

After receiving 3 months of Dacogen treatments my father's platelets (3-11k) and red blood cells continue to crash. Platelets are the main issue. The oncologist recommends 2 more months of treatment. How much time should we give Dacogen to evoke a positive response?

[Neil Cuadra]

Half of patients who respond have taken Dacogen for 3 months. The other half take longer (4 months or longer). The longest wait for a positive response is reportedly 9 months.

Do you see any alternatives to continuing to wait for your dad to have a positive Dacogen response?

[steve_ky]

Yesterday, the local oncologist decided to suspend Dacogen after 3 cycles because his blood counts were so low, even with infusions every 2-3 days. Not sure if he intends to restart the medication. Another option is to retry Vidaza or Vidaza + Nplate combo. His counts returned to normal for several months on Vidaza (platelets = 300k+) between June-December of 2014. Eventually the platelets slowly dropped down to 60k, then the oncologist decided to stop Vidaza. We are scheduled to have another bone marrow biopsy and FoundationOne gene sequencing test in 2-weeks. Tried this before, however, the current oncologist didn't process the specimen quickly and it expired. Yes, we have a new oncologist now at an MDS center of excellence. I'm pushing him to have an h-pylori test as well.

[steve_ky]

New doctor from center of excellence says nothing more can be done for a 73 year old who has failed on Vidaza and Dacogen. SCT outlook is poor for this age and not recommended. The final direction is to continue platelet infusions until they no longer work.

Family is shaken by this news because we had so much hope. The 1st three bone marrow tests indicated 0% blasts. The 4th test indicated 5%. We walked into the meeting expecting something positive. Doctor stated that he could only make it 6-months. I'm shocked that no other treatment is available for someone in his condition.

We are going to try something else here. Luckily he still has a strong immune system and functions well in his daily activities. Going to see how living healthy with a positive mental attitude helps. I do know of someone who was diagnosed with AML and given 3-months to live. She made it 9-years without treatment. Maybe a strong will to live can count for something.

FYI - Here's a link to SCT results in USA:

http://bloodcell.transplant.hrsa.gov...er/center.aspx

[Neil Cuadra]

Originally Posted by steve_ky

New doctor from center of excellence says nothing more can be done for a 73 year old who has failed on Vidaza and Dacogen.

That's very disheartening news. Do they really consider him to have failed Vidaza, even though he had a positive response for many months? Perhaps there's a reason his current hematologist doesn't want to try it again, and doesn't want to give you any false hopes, but I hope you get a more detailed explanation.

No matter what, a strong positive attitude can be a great boost.

[steve_ky]

Neil,

I posed the question to both the Center of Excellence (CoE) hematologist and our local oncologist. The CoE doctor explained that my father wouldn't have a favorable response going back to Vidaza after both medicines fail. Said they haven't witnessed it.

The local oncologist said it's due to the Vidaza side effect of lowering counts. They won't prescribe to someone with single digit counts (platelets & reds). Side effects could do real harm in this scenario without the potential to regain his response.

[tytd]

Hello Steve,
You might consider asking the COE MD if your Dad would be a candidate for a clinical trial with Promacta or just calling NIH and see if they might have a clinical trial available for him. I am also puzzled why they gave up on Vidaza if his platelet count went up that high on it. What does his Hemoglobin run? Good luck.

[steve_ky]

The CoE MD said no phase #3 trials exist for MDS patients who have failed both Vidaza and Dacogen. Only phase #1 and the goal is to determine the appropriate dosage in humans, but not necessarily to improve the patient's condition.

Also says he doesn't like the Promacta/Nplate + Vidaza/Dacogen tests. Suggested they are risky for MDS patients. Insurance won't pay for them either because not FDA approved

Hemoglobin use to be 9-11 range back on Vidaza. Now it is 6-7 range with blood infusions.

I would love for him to retry Vidaza because his platelets were at 67k after the final cycle. Imagine experiencing your counts rising from 3k to 335k in 2 months, and they have them drop down to 208, 128, 67 thereafter.

Thanks

[Maura R]

Steve,

So sorry to hear of this latest news on your dad. Remember what you told me, miracles do happen!!! Sending you nothing but positive thoughts and many prayers for you all.
Maura

[tytd]

Hello Steve, Obviously I do not have all the details of your father's case but why do they think that Vidaza failed if his platelets before they discontinued it were as high as 67k. Did the hemoglobin not increase on Vidaza or did they feel the increased blasts were a sign of failure? I've lived with platelet counts below 20k for many years so of course a count of 67k sounds good. Which COE is your father going to?

[steve_ky]

His hemoglobin reached the normal range for 2-3 months. The doctors both say Vidaza failed him because it was falling by 50% per month. Said it would continue to keep falling in their experience. I would like to see him retry with Vidaza but they say nope. We are with Vanderbilt in Nashville.

[steve_ky]

Results from the latest bone marrow test indicate 3% blasts, down from 5% in May. We are relieved at the moment.

[tytd]

That is good Steve , so maybe the doctors are being a little more pessimistic than they need to be. Hope his counts will continue to improve.

[Pcebrerojr]

Praying for your father and family, glad to see his results improved and hope they continue