CMML

On Feb 02, 2012 10:46 PM bunnell wrote:

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.

bunnell, I read this past week about vitamines and Folic acid that they both may encourage not only growth of good blood cells as well the bad ones. I was diagnoised 18 months ago and my blood work has stabilized and am still in the watch and wait phrase. I started the mutivitamin and folic acid at the time I was diagnoised. We are all different. I also have no chromsone abormalities. Try to eat  as many of antitoxic foods that I can afford, drink filtered water , reduce stress and get plently of rest. I'll see my doctor at the Wilmot Cancer in Rochester, NY on the 2/10 and plan to ask her about this new " idea". In the past  I was close to having to start chemo when I first saw her. I am also a retired nurse. Sharon

Hello Mark,

I am 61 now and after years of testing and numerius doctors and cancer centers, I found a Oncology Doctor who committed to giving me a real DX.  It was CMML.  Unlike most of the others, I have chronic low white cell counts.

I have been on Vidaza treatments since Nov 2004 (in my 8 year).  I have not found any information about remission, just that my CMML is "Managed by the Vidaza", so we receive treatments for life.

I have opted for the injections since I have had many hospital bouts with "infections of unknown source".  My blood just become "sepsis".  I even been quarrintined by the CDC and they failed to indentify the infection source.  I personally have had enough IV sticks at these times to last a lifetime.

I did initially experience the large hard lumps at injection points.  I have learned to manage these now by massaging them as soon as my doctor has finished the two injections to disperse the Vidaza.  I will still experience occasional lumps from time to time, mostly due to how the doctor performed the injection(s).

I have decided to take Vidaza, monthly, for the rest of my lifetime.  I also did not like odds for the individual stages or the overall post-transplant odds if I have a transplant performed.  On the occasions when I have met a transplant patient and ask if they would do it again they either [1]Stared off into space and did not respond, [2] Said "I would for my family, but not for me", or [3] Just said "No".

My doctor recently said I could easily take Vidaza for another twenty years.  I just physc myself up to receive my next treatment and know it will pass in a week.  During the weeks between treatments I normally feel good and even forget I have CMML Leukemia. 

I have watched the progress of the "Oral Vidaza" now in clinical trials.  The studies are very promising and the patients almost all say they experience little to no side effects.  I sure the Oral Vidaza will be of great benefits to all CMML patients once it if FDA approved.

Vidaza:

PROS:  Has relieved most of my symptoms and has added years to my life.  Increased energy and not feeling sick every day, month after month, year after year.  No hair loss due to Vidaza treatment (Ha!).

CONS: Have to receive treatments for the rest of my life.  Expenses over lifetime and concern that medical insurance will stop treatment paysments at some point in time.  Annual to Bi-annual hospitalization due to infections caused my impaired immune system.  Travel restrictions; do not want to be to far from doctor if I become Ill.  Winter seem to be take all my effort to manage in cold weather and avoiding persons and place I may acquire an infection.  I spend the winter (flu season) in my home.  Can not do all the activities and projects I could before onset of CMML.

I have been able to seen my sons obtain their Masters Degrees and my oldest meet and marry his wife.  I have met and married a special lady.  My wife dauthers are getting married this years and I will be her side to share her joy.

I learned to appricate life from a different viewpoint and I do not feel that I am treated differently by others.  In fact, most close friends or other cancer patients are surprised to learn that I am a cancer patient!

My life continues, in a slightly modified or controlled mannor, that just seems to be a normal everyday lifestyle to me.  Thanks to my doctor and Vidazza.

God Bless you all!

 

Dan

 

My dr. says I am stable right now, but my Monocytes are varying from16 to 30, still anemic

I am getting a second opion because I only had one chemo treatment for 6 months in 2009. I am going to check if I should be on chem more, like you have been...

Mark

ps: next appt. 2-28

Keep me posted, and I will to

Mark

chronic myelomonocytic leukaemia

cmml.co.nz is my web site

Hello,

My brother in law was diagnosed with cmml.  How are you doing?  Can you tell me the treatment you are doing?  Thanks.

How are you doing now? I have reviewed your site and found it very interesting. Praying all is well with you. Jackie

Hello,

My brother-in-law is 4 months post diagnosis.  He has been taking regular chemo since then.  Overall, he still looks good but how much longer can your spirits stay up?  The doctor is talking transplant in August with umbilical cord.  I would love to hear from people who have had successful transplants with cmml diagnosis.  Thanks for your prayers.  How are you?

On Jan 08, 2012 11:47 AM ekaelp wrote:

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!

Mark

Hello, Mark:  It very is encouraging to hear that you are doing relatively well 3 years later.  I was diagnosed last early fall after high monocytes in my blood test.  I am a 69-year-old female, very physically active and a late stage cervical cancer survivor (out almost 5 yrs).  Obviously, the transplant option is not in the cards for me.  I agree that the watch and wait aspect is a bit daunting, but at least it means that I'm not taking any medications yet.  I have learned from my previous cancer experience that you need to take the statistics with a grain of salt as not only is everyone different, but statistics are gathered over years and improvements in treatment have been made, so keep the faith! 

Bless you,

June from Jersey

 

 

 

I am 63 and have had CMML for 6 years. I have not had treatment other than several rounds of iron infusions for anemia. Generally my major complaint is fatigue. I feel fortunate to do so well, but frustrated with how little zip I have. I really have to pace myself. When I was first diagnosed we arranged for a consultation ay the 'Hutch.' in Seattle as they are doing research there.It just made me feel better about my care in central Oh. I get bloodwork every three months with mylatelet count usually being a round 70. Best wishes to all of you. Mary Carol

Both my father, age 80 and I age 54 have CMML. My fathers is more advanced thtn mine and he is at the point to where the drs. recommended a blood transfusion. Neither of us will accept blood transfusions, so we asked about procrit (erythrypoeitin). They agreed and he received his second shot this week. It seems to be helping, he perked up after a week from the first shot and now drs. are monitoring his blood levels before the next shot. He will get a test next week, before the next shot to see if he need to even receive the full couse of injections.

Mark