Does anyone else have CMML?

Hi,

I was diagnosed with CMML in July of this year. They put me on Hydroxyurea but it lowered my platelet count so they took me off. I am starting Vidaza Monday.

I am interested in alternative medicine and will get the book you recommend.  Looks like you know what your doing. I am a 67 women and if I could live 8 more years I would be happy. Do you have any other recommendations?

I also wanted to ask about traveling. Do you take an precautions? Are you afraid of peoples germs?

Thanks God I found this web site. I have felt so alone and scared. Your email has give me hope.

 Thanks,

Winkie 

 

On 5/4/2009 wendyv wrote:

Thanks Walrus.... great to hear you doing so well, travelling and getting off the beaten path. You really DO give me hope! My diagnosis was 18 months ago... I'm now almost 66 and female.

Like you, I do lots of supplements, and have experienced good test results, particularly when meditating on certain readings I would like to achieve.... eg dragging the moncytes down from 7 to 3.5 Can't do it consistently, but I keep on trying. I also exercise daily... was a PE teacher, and a bit of an exercise junky... do yoga daily, surf, walk, swim etc. Haven't lost any weight though!

I'd like to stay in touch, so hope that suits you. Have you read up on stem cell research? I tend to think that might just be the answer for us, and am trying to discover as much as possible about it.

Keep well....

Wendy

Hi Wendy,

I am a 67 year old women, diagnosed with CMML two months ago. I am writing you because I was told this was a mans disease and when I saw your name I thought it would be nice to have a woman to discuss issues with.

Hope your doing well,

Winkie 

 

I do get a blood test every month, so I know when my neutrophils are low and I have to watch out for infections--washing hands often, not touching my nose or eyes after touching other people, etc. etc.

 

My biggest problem in traveling is keeping to my mostly vegetarian diet. At home, I live on smoothies made from fruit and tofu and milk, with added supplements, such as ground-up flax seeds. Hard to get that while traveling. When I visited Germany for a month, and ate the typical German diet with meat and potatoes, etc., my blood results were down afterwards. Not like visiting China, where my results were up!

 

Best wishes!

Oh, I do try new things from time to time. One book suggested that green tea from Japan, especially sencha, is better than the usual green tea, so I've laid in a supply of Japanese green tea. Trying new things gives me the feeling that I have some power over this CMML. Keep at it!

My wife was diagnosed with CMML Monday and started her treatment with Prednisone 60 MG a day. She acts and looks good but not sure if she is hiding some of her problems from me. She is very shy and does not like other people to know when she isn't doing well, so this may carry over to me. When she first started having problems she refused to go to our Dr. but I told her I was scared and didn't want to lose her she finial gave in and went in for tests. Her platelets or very low and going down, so more test and more test were done. Till Monday when we got the results of the tests. Her antibodies our attacking her red blood cells. The Dr. said that the bone marrow is working overtime to try and keep up and is becoming deformed. The bone marrow is making lots of red blood cells but they are not being released into the blood fast enough. The Prednisone is an atemp to shock her antibodies and get them to stop attacking the red blood cells. We are just starting out with this and know nothing. We have been married 43 years and have a very close loving and trusting marriage.

I have 27 years of sobriety, my wife stuck it out when I was drinking and during the early recovery when I was gone all the time going to meetings. She is a gift from God as she has helped though all the BS and prayed for me now it is my turn. 

 

On 10/7/2009 Grog1 wrote:

My wife was diagnosed with CMML Monday and started her treatment with Prednisone 60 MG a day. She acts and looks good but not sure if she is hiding some of her problems from me. She is very shy and does not like other people to know when she isn't doing well, so this may carry over to me. When she first started having problems she refused to go to our Dr. but I told her I was scared and didn't want to lose her she finial gave in and went in for tests. Her platelets or very low and going down, so more test and more test were done. Till Monday when we got the results of the tests. Her antibodies our attacking her red blood cells. The Dr. said that the bone marrow is working overtime to try and keep up and is becoming deformed. The bone marrow is making lots of red blood cells but they are not being released into the blood fast enough. The Prednisone is an atemp to shock her antibodies and get them to stop attacking the red blood cells. We are just starting out with this and know nothing. We have been married 43 years and have a very close loving and trusting marriage.

I have 27 years of sobriety, my wife stuck it out when I was drinking and during the early recovery when I was gone all the time going to meetings. She is a gift from God as she has helped though all the BS and prayed for me now it is my turn. 

It is very hard to hide the signs of CMML.... Weight lose, lose of energy,bruising and little red dots on the skin (signs of bleeding). All you can do for you wife is be there for her and pray. I am a 66 year old woman with CMML and my husband has been wonderful. And the definition of wonderful to me is not saying, "everything will be OK", but to say, "I am so sorry this is happening to you. Is there anything you need me to do."

This is a scary illness, but they new drugs they are coming up with sound promising. I am on Vidaza and it has helped a lot.

My prayers will be with you and your wife. You sound like a good guy. Best of luck and hang in there. She might like to talk to another woman with CMML. If so tell her to drop me a message.

Winkie 

 

The first signs she had was when the blood bank refused her blood anemic they said. Than she began to have very sore and swollen angles with bruises without doing anything to cause them. Also bruising every time she bumped into anything. She had the little red spots on her angles also which we learned where bleeding. She seems to still have lots of energy and does everything she always did. She went in to see dr. for the angles and they did a blood test her platelet count was 51000 so reason for doing more tests. Two weeks later it was down to 47000 and dropping. Than they did the bone marrow biopsy and found that she had cmml. I'm hoping the Dr. is wrong, She is a LPN and loves her job but standing on her feet for 8 hours just makes the angle problem worse. She takes care of very sick babies in a Neonatal center. I know she would hate to give up that job. I'm retired and have tried to get her to retire also, but she loves her job to much to give it up yet.Thanks for the return message.

What is your wife's White Blood Count (WBC). It should be 2.3 to 12 thousand. As it goes up the energy goes away. My platelets are 58, which is rising from a low of 31. After one treatment of Vidaza my WBC went down to 7 from 65 thousand. It is my understanding that the low platelets causes the red pint points in the skin and the bruising. The high WBC causes the lose of energy, weight lose and makes you open to infections.

The sooner they get the numbers under control the better, but it is also my understanding none of the drugs are a cure. They are to control the numbers so it doesn't progress to AML. Please check these facts with your own doctor. This is just what I have been told. I have had CMML for about 3 months and have lost almost 60 lbs. Therefore, very glad to get the WBC down to normal. Hopefully, I will stop losing weight. How old is your wife?

I'm at home baby setting our new puppy which my wife fell in love with and just had to have, a 16 week old black boxer (Daisy.) She is at Dr. doing more Blood work. She called with some of the results her platelets or still going down 37000 today. She said that some of the other counts or up don't know which ones. She is 61 and I'm 62.

Hope your wifes blood work show things are getting better for her. I had my second blood test today after my Vidaza treatment and the results are great. My platelets are 183 and my WBC is 3.6. Both normal range.

Puppy sound like fun. Hang in there and I hope for the best for you both.