Want to meet other CMML patients

Searching for a living CMML patient.... would love to talk. I've been recently diagnosed, and told no treatment is available.I live in Australia

Hi wendyv

I am a male, 72 yrs. old and in March was diagnosed with CMML. The Oncologist said it is untreatable, uncurable and terminal.

I am currently receiving chemo (hydroxyurea 1000mg/day) and whole blood transfuions 2 units every other Friday. All of this helps in fighting the weakness and fatigue but is no cure.

There are treatments in the 'clinical study' phase which I am going to be taking part in sometime soon. They wont cure the cancer but will retard its growth so that is good news I hope.

Depending on your age and condition CMML can be treated with a bone marrow transplant but it is risky and often inaffective.

Friends often offer herbal and other remedies some of which come with what appears to be credible testimony. Check them out. With CMML there is nothing to lose but first of all ask your doctor so there is no conflict with what he/she is trying to do. And there is no magic!

Remember too there is prayer if you are so inclined.

Good luck and hang in there. You are not alone.

Hi Wendyv,

My mother was recently diagnosed with CMML.  Her doctor told us that there is nothing they could do other than just wait.  He said there was under a 5 percent chance that this could develop into anything worse.  We left that appointment thinking that she would have ten to twenty years without any problems from this disease.  My mother is still anxious and I decided to keep researching CMML.  There is conflicting information where some are saying they only have two to three years to live.  I am aware that there are variations of the disease with two classes and something about a chromosome factor.  I want to help ease my mother's mind and give her as much information as possible.  Can you tell me exactly what supplements you are taking?  Also, what reference material can you suggest? 

Prayers and well-wishes to you,

Sue

Dear Sue,

 My father was diagnosed with CMML aboutt wo years ago and has been getting "Decitabine" as a chemo drug. he has undegone two rounds of chemo.

his health is much better. but i agree with you about the survival statistics on the internet. there is no clear indication. as of now, my father is well. his platelets count is better and has began to eat healthy. 

HI AGAIN,

following up on my last post to Sue. after reading up heavily on different forums on the internet, it seems that there is a lot of conflicting information.

the more serious, "medical websites" cite survival rates around 24 months, but many of the forums and its patient stories contradict things completely.

 my sense is that, given how my father feels tired, rather fast, it is important to maintain a clean and healthy enviroments. emotional stress should be kept minimal.

I should have told you that I am a 60 year old female.  I saw my doctor today at MD Anderson.  I asked him about the flu shot and swine flu shot and he said I am NOT to get the vaccine shots for either due to the live virus in the vaccination.  He will not let me take any natural remedies as it might not be compatible to the chemo (Vidaze) that I am on.  I was first diagnosed in March with Myelodysplastic Syndrome (MDS) and was given a 2nd diagnosis of CMML after going to MD Anderson. 

On 9/24/2009 SusanLB wrote:

I should have told you that I am a 60 year old female.  I saw my doctor today at MD Anderson.  I asked him about the flu shot and swine flu shot and he said I am NOT to get the vaccine shots for either due to the live virus in the vaccination.  He will not let me take any natural remedies as it might not be compatible to the chemo (Vidaze) that I am on.  I was first diagnosed in March with Myelodysplastic Syndrome (MDS) and was given a 2nd diagnosis of CMML after going to MD Anderson. 

I'm a 66 year old female. diagnosed with CMML July 2009. I just finished my first round of Vidaze. The shots (three a day for seven days) were painful. The shot sights are bruised, red and soar. I have a hard time sleeping due to the soreness. 

How many rounds of Vidaze shots have you had? Have you had the same experience? have they helped you? I am to start my next round Oct. 18th, but I have reservations. Two weeks of  hell out of each month isn't something I am looking forward too.

 Any advice???

Hi Winkie,

I am currently on my 6th month of Vidaza.  I am taking 480 mg. once a month but i am also on a clinical research trial at MD Anderson for oral vidaza.  I take 8 pills (60 mg.) seven days a week.  I also had the injections my first round of chemo and I agree it was not real pleasant.  The oral Vidaza is a wonderful way to take the chemo.  I take one Zofran (anti nausea) tablet 30 min. before i take the chemo and have little to no side effects. The oral Vidaza is not FDA approved but hopefully it will be in the near future.  Could you get intravenous Vidaza instead of injections?  I could if I was treated here in Illinois but i do not have the confidence in my doctor here that i have at MD Anderson in Texas.  I fly twice a month to Texas to get blood work and pick up my chemo.  The Vidaza has not put me into remission yet but I am hoping it will in the next month or two.  I have not had any blood transfusions since being on the Vidaza but my Monocytes are still a little high at 13%.  How are your counts?  Were you diagnosed with Myelodysplastic syndrome also?  Do you have problems with you red blood cells, white cells or platelets?  What has your doctor told you about remission or future?  It's nice talking to someone else that has this same diagnosis.  I have always been anemic and this is why I was originally sent to a hemotologist.

As far as my advice.....I don't see how you can not continue the Vidaza.  I know it's a pain but the alternative is not good.  Hang in there and we'll stay in touch.

Susan

On 9/30/2009 SusanLB wrote:

Hi Winkie,

I am currently on my 6th month of Vidaza.  I am taking 480 mg. once a month but i am also on a clinical research trial at MD Anderson for oral vidaza.  I take 8 pills (60 mg.) seven days a week.  I also had the injections my first round of chemo and I agree it was not real pleasant.  The oral Vidaza is a wonderful way to take the chemo.  I take one Zofran (anti nausea) tablet 30 min. before i take the chemo and have little to no side effects. The oral Vidaza is not FDA approved but hopefully it will be in the near future.  Could you get intravenous Vidaza instead of injections?  I could if I was treated here in Illinois but i do not have the confidence in my doctor here that i have at MD Anderson in Texas.  I fly twice a month to Texas to get blood work and pick up my chemo.  The Vidaza has not put me into remission yet but I am hoping it will in the next month or two.  I have not had any blood transfusions since being on the Vidaza but my Monocytes are still a little high at 13%.  How are your counts?  Were you diagnosed with Myelodysplastic syndrome also?  Do you have problems with you red blood cells, white cells or platelets?  What has your doctor told you about remission or future?  It's nice talking to someone else that has this same diagnosis.  I have always been anemic and this is why I was originally sent to a hemotologist.

As far as my advice.....I don't see how you can not continue the Vidaza.  I know it's a pain but the alternative is not good.  Hang in there and we'll stay in touch.

Susan

Hi Susan,

 Thanks for answering my questions. It's nice to talk to someone in the same boat. I'm pretty new to this (diagnosed 2 months). The oral Vidaza sounds great. I will ask about the intravenous Vidaza.

I was very healthy and went for a physical. The blood work showed large WBC. Then I went for a bone marrow test and they found Trisomy 8/CMML. It is my understanding that if you have CMML you have MDS. I was told CMML is a subtype of MDS. 

I don't know my Monocytes count. My WBC is 42.6, down from 65.3 after taking Hydroxyurea for a week, but they took me off because my platelet count went from 117 to 36. I was off the Hydroxyurea a couple of week before starting the Vidaza and the platelet count went up to 51 and the WBC stayed the same. I haven't gotten my numbers after my first Vidaza treatment yet.

I am with Kaiser and have a lot of confidence in my doctor's. They said the survival rate is 12 to 60 months, but that it is very individual. All their treatment is to stabilize the numbers and keep it from progressing into AML.

I was just getting ready to retire and had big planes. I feel like I have stepped into a black whole. I have lost 50 lbs (good thing I was chubby) and have no energy. I just want to get well enough to enjoy what ever time I have left..... take a few trips, spend some of the retirement money. Oh well, you never know what is coming your way. Can I ask how old you are? I am 66.

 Winkie