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MDS Myelodysplastic syndromes

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  #1  
Old Wed May 30, 2018, 04:37 PM
mdsmom mdsmom is offline
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Question on Decitabine

A brief history about her- She was diagnosed with breast cancer in 2006. She underwent 4 chemo of Adriyamycin, 4 Taxol and 12 Herceptine (Total treatment of 2 years)



My Mom, 76 years (she is in India) was diagnosed with MDS in December, 2017. Her blasts were 15%. Platelets were 11000. She was given single platelet donor transfusions and it used to be twice a week in the beginning. The doctor started the treatment of Decitabine once every 4 weeks and told her to take 4 cycles.
In March, her platelet count improved and she used to get transfusions once in 3 weeks (the lowest platelet count was 8000)
In April, the platelet count improved further. Now it's once in 5 weeks. Every week when she gets her blood tested the platelet hovers around 24-32k.

After 4 cycles of Decitabine, she got bone marrow check in April 1st week. The blasts were reduced to 2%. The doctor recommended to take 2 more cycles of Decitabine. The 6th cycle will end on Friday June 1st, 2018.

Now the doctor is saying to continue to take Decitabine every month until the patient responds. When asked what after the patient stops responding- he kept mum.

I want to ask the fellow MDS patient as to what is the treatment regiment?

I had heard that you can give Decitabine in 2-3 month intervals.

Is there any other parameter that you are going to measure to determine the effectiveness/responsiveness

We heard that Decitabine needs to be given until patient responds. Can anyone please define what response means.

Thanks for your inputs
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  #2  
Old Fri Jun 1, 2018, 12:00 PM
rich rich is offline
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I have had 21 cycles of Decitabine and will continue until I no longer respond. Then my last resort is to have a stem cell transplant. I asked my Doctor if there was anything after Decitabine fails and he said no.
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Male 64 years old. Diagnosed MDS with 11% blasts in August 2016. Blood counts have normalized after 3 rounds of (Dacogen or Decitabine) Currently on Month 24 of Dacogen. Waiting for Decitabine to fail before doing SCT.
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  #3  
Old Thu Jun 7, 2018, 10:29 PM
maggiemag maggiemag is offline
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Hello MDSmom,

Well, only your doctor can really give you answers; I'm a patient myself. But it seems to me that her blasts being down to 2% is a very good response. Counts can go down quite a bit in the beginning of treatment, but improvement in her counts plus the blast % would be the main ways to judge response. Her platelets have improved; I think there's quite a difference from 8K to 32K. Sometimes cytogenetics in the bone marrow can improve which would also signal a response.

I think I've read that you must give Dacogen or Vidaza at least 6 cycles to see if it's helpful. I have also read that the drug needs to be continued indefinitely until it stops working, which could be years. Counts crashing and staying down, peripheral blasts, increase in bone marrow blasts would all point to the drug stopping working. I don't think Dacogen can be given every 2 or 3 months, especially in someone who hasn't been on it very long. Maybe there are exceptions in long term Dacogen patients.

Hope this helps some, and please keep us posted.
Margaret
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS
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  #4  
Old Fri Jun 8, 2018, 09:35 AM
Pearl Pearl is offline
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Quote:
Originally Posted by maggiemag View Post
Hello MDSmom,

Well, only your doctor can really give you answers; I'm a patient myself. But it seems to me that her blasts being down to 2% is a very good response. Counts can go down quite a bit in the beginning of treatment, but improvement in her counts plus the blast % would be the main ways to judge response. Her platelets have improved; I think there's quite a difference from 8K to 32K. Sometimes cytogenetics in the bone marrow can improve which would also signal a response.

I think I've read that you must give Dacogen or Vidaza at least 6 cycles to see if it's helpful. I have also read that the drug needs to be continued indefinitely until it stops working, which could be years. Counts crashing and staying down, peripheral blasts, increase in bone marrow blasts would all point to the drug stops working.

Hope this helps some, and please keep us posted.
Margaret
Mags

Your posts are always so useful. You have been at this a long time, and I remember that you are a retired RN. Are you associated with the MDS Foundation?
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  #5  
Old Sat Jun 9, 2018, 06:32 PM
maggiemag maggiemag is offline
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Well thank you Pearl! I appreciate it, but I am not associated with them, except I am a member of PACCT, the research group. I've had MDS for 8 years now, so have read a bunch and listened to many webinars. Knowledge is power; you feel more control over the disease. Yes, I am a retired RN, which makes it easier in some ways, but harder in other. At any rate, I am happy to still be around, and try to help if I can. And good luck with your journey.

Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS
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  #6  
Old Sat Jun 9, 2018, 08:03 PM
Pearl Pearl is offline
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Quote:
Originally Posted by maggiemag View Post
Well thank you Pearl! I appreciate it, but I am not associated with them, except I am a member of PACCT, the research group. I've had MDS for 8 years now, so have read a bunch and listened to many webinars. Knowledge is power; you feel more control over the disease. Yes, I am a retired RN, which makes it easier in some ways, but harder in others. At any rate, I am happy to still be around, and try to help if I can. And good luck with your journey.

Mags
There are very few Board members with your background and experience. In fact, I do not know anyone else like you. You've probably been through more than you say. You should post more so people can call on you for advice. Maybe Neil can form an expert panel.

If you started in May 2009 its Nine Years! Nine years and counting sounds pretty good to me!

Last edited by Pearl : Sat Jun 9, 2018 at 08:15 PM.
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  #7  
Old Mon Jun 18, 2018, 11:24 AM
mdsmom mdsmom is offline
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Thanks all for your informative inputs. It helped.

We went for a second opinion with 2 other doctors and they told us to continue on Decitabine until she stops responding.

After the 6th cycle of Decitabine her platelets dropped to 9000 and she was given platelet infusion. Just after a week of the infusion the platelets again dropped to 11000 and had to infuse again. This is the first time in 3 months that the platelets dropped so low in a week's time.

Plus, she is having severe constipation. She is on laxatives but that does not seem to help.

It's been a roller coaster ride.
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  #8  
Old Thu Jul 19, 2018, 05:52 PM
mdsmom mdsmom is offline
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Has anyone got treated from here??

Hello,
I was watching a video from someone whose Mom got cured of breast and lung cancer from this foundation. Does anyone know more about this? I am not sure if they treat MDS. I have emailed them and hope to get an answer from them.

The Champalimaud Foundation, Lisbon, Portugal
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  #9  
Old Wed Aug 29, 2018, 11:34 AM
mdsmom mdsmom is offline
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Decitabine administration

Hello,

My Mom is getting Decitabine every 6 weeks after the 6th cycle.(Before it was every 4 weeks) She completed 8 cycles. Has anyone got Decitabine once in 8 weeks rather than once in 6 weeks.
Her platelets hover around 20-60k and usually has platelet infusion once in 8 weeks or so.
Thanks
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