One patient with glioblastoma still alive nine years later
by bunnell on Sat Jan 07, 2012 06:59 PM
Good morning, Mark,
I was diagnosed with CMML three years ago this month. I was 67 yrs. of age. Started the "watch & wait". Four months later my blood work changed significantly, ie. WBC 44,000 and rising. Bone marrow BX showed blasts > 20 so I was diagnosed with Acute Leukemia from the CMML - a complication. Offered a Transplant with 30% chance of cure. 20% chance of complications and death.
Next appointment the Hematologist asked to try Dicedipine (Dacogen), a demylenating agent. I went in to remission after four cycles (five days of infusions every three weeks).
Fast forward, I am still on this Chemotherapeutic drug but every 8 weeks for five days. Afraid I will relapse.
Anyone taken a demylenating agent for their CMML?
Hematologist thinks we should start Titrating down due to concern of long term effects from the medication. No history of a patient with CMML taking this drug in remission for so long.
by ekaelp on Sun Jan 08, 2012 11:47 AM
Thanks for your info. I am currently a 54 yr old male and was diagnosed in June of 2009 when I was 51. After repeated bone marrow tests, and a 2nd and 3rd opinion, they started me out with Vidaza for 6 months. They won't say I am in remission, but things look ok on the blood labs (except for the Monocyte level at 30%) I don't like the "Wait and Watch" part of this leukemia treatment.
I have heard positive things about it and Vidaza both are demythelating agent too.
I already feel like I have beaten the odds (if you take into account what internet statistics say about CMML. I am going to take some type of action myself, I don't like the odds for the transplant option - not to mention the costs involved going that route.
I am going to talk to my Hema/Onco Dr. about Dacogen next time I go in. It's not that I "Want" more chemo, it's just that there are no other options that I can find.
The Vidaza was given subcutaneously, so I didn't have to have a port or infusions. Boy does that make you miserable for a while, not just naseua, but the injetion sites get very swolloen and painful. Is Dacogen like that too? Or is Dacogen infusion?
Keep in touch and I will too!
by herewego on Sun Jan 08, 2012 02:59 PM
Mark, I too have CMML. I was diagoised 9/10. Traveled to a larger Cancer Center[ 1 hemotoligist to 12 Hemotoligist respectively] for a 2nd opion. was close to being put on Dacogen. Results very from Local labs to larger city Labs so I travel 1hr.40 minutes to just to have Blood work done. 2hrs to see the doctor and well worth the time and the money.I am female with diabetes that compromises my immune system. Everyone seems to talk about chemo and little about what you can do to change your life style to enable your body to help fight CMML. By the way, Dacogen can elevate your blood sugar alot during treatment. I am in the wait and Watch phase.and my monocytes are 37%. If you or anyone else wishes to know my lifestyle changes , reply. Reply if I can help in anyway. I am 65 and a retired nurse. Remember everyone body is different and responds differently to any treatment. To my knowledge there is no remission. I also have a" Bucket List". May God Bless you all that have CMML. Sharon
by lynne1276 on Tue Jan 10, 2012 07:51 PM
My mom was diagnosed with CMML two years ago at 58. She is also a nurse but still working full time as a charge nurse of a nicu. Needless to say its a very stressful job and I worry about her choice to stay. She is also in the wait and watch phase. I am glad to know that other people are doing the same thing. Her 3 month appt is today and I am always sick on those days waiting for results. Are you taking any vitamins? She won't research for herself because she tries to pretend this isn't real.
by herewego on Wed Jan 11, 2012 10:35 AM
Lynne, Sorry to hear that you mom has CMML. Today I travel for Bloodwork so this will be short. Stress plays an important part on the body's ability to fight diseases. She could be in denial or perhaps she does wish to talk about it. My own family is this way. CMML doesn't just go away. I need to talk about it at times and feel alone. Patience and be there when she needs you. Do your own research to keep yourself informed. There's a saying "the truth will set you free". I have monthly bloodwork so I know each month what the results are. That has helped me accept and keep some peace of mind. I call every month for the results and have a copy sent to me which I place on a graft sheet. It tells me How my bloodwork results compare . For the time being they have stabilized. Everyone has they're own way of dealing with it. I take a multi-vitamin and Folic acid [helps to build better blood cells]. I see my doctor every 4 months. She keeps a close eye on me. Let me knowhow your mom makes out at the doctors. Sharon
by lynne1276 on Wed Jan 11, 2012 08:39 PM
I hope your bloodwork continues to be stable. My moms platelets were only 46 thousand. The doctor said she is on a steady decline. He feels that it isnt a dramatic drop so cleared her to be seen in three months for her bloodwork. She did finally ask him questions about when he feels she will need chemo and he thinks next year. She is almost 60 and the doctor advised her it will be a fight to live past 70. I will tell her about the vitamins. I told her to look into juice plus. Keep me informed on how your feeling and how your bloodwork went. I believe there will be a cure.
by sam000256 on Thu Jan 12, 2012 01:28 PM
i have CML leukemia for last five years. i hope the above web site will help.
by troychardy on Sun Jan 15, 2012 06:42 AM
On Oct 17, 2009 12:00 AM Pepper27 wrote: I was told that CMML is very rare. There aren't many studies out there for this. I am looking for other people or more information on this Leukemia.
On Oct 17, 2009 12:00 AM Pepper27 wrote:
www.cmml.co.nz is my web site if your interested in having a look
by bunnell on Thu Feb 02, 2012 10:46 PM
I was told not to take Vitamins as it would encourage, not only growth of good blood cells, but the bad ones as well. No herbs or vitamins.
by bunnell on Thu Feb 02, 2012 10:58 PM
It is very informative, Sam,
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