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Jack_dup1
MemberJules,
Thanks for posting, I am close to where you were, my wbc’s goes up every month, I have resisted VIDAZA to this point, but will have to reconsider when my whites get too high, now at 36.5, platelets 114k.
JackMemberHi Caroline,
The problem is not “your being able to figure this disease out”, it is that the Doctor’s can’t figure this disease out. Us CMML patients are like snowflakes, no two are alike. The only thing we have in common is that it usually affect two out of three of our counts, with me it is Platelets and WBC, I have never had an abnormal RBC count. Like a lot of these diseases, CMML used to be called pre-leukemia. When first diagnosed, I had low platelets (72,000) and low WBC 3.2, now my platelets stay around 100k and my WBC increases every month slowly (36.5). I guess I’m lucky for now, I am able to work, which requires a lot of travel. My only real symptom is exhaustion, which comes and goes.If I have learned anything over the last couple years is that you have to bother the Doctor, ask questions, and if you don’t understand the answer, ask again. You have to be assertive. A lot of older patients think of the Doctor as some type of God, and we mortals shouldn’t do anything to offend or bother them. Any good Doctor will welcome questions.
Like I said in my previous post, some of our counts go down (MDS) or up (Myeloproliferative Disease), I’m over simplifing, but that is why they don’t know how to catagorize us.
After 3 years I’m still as confused as you. I wish your father all the best, and am sorry I can’t be of more help.
JackMemberCaroline,
I am a little confused about your Dad’s diagnoses. CMML is a pre-leukemia, it is chronic, not acute. You need more information. I have been diagnosed with CMML for 3 years, it has not yet transformed into leukemia. You need more input. Did he have a bone marrow biopsy? Has this hemo. ever treated CMML. Go to a Center of Excellence.CMML affects us all differently, most fall into the MDS category, mine is myeloproliferative. My reds are normal, platelets low (114), WBC 36.5 and climbing. There are others more informed than I am who will help clear up the confusion.
Good luck and keep us informed.
Jack R.MemberThis won’t help for me, my WBC is 36.5, I need mine lowered.
JackMemberI received a response to an E-mail from Marsha about a week ago and all is well with her.
JackMemberI’m very sorry for the loss you brother to this horrible disease. My prayer are with you and your family.
JackMembergreg, Didn’t ask me, but I will put my 2 cents worth in anyway,2 years ago my platelets were are 70k, I started Pineapple and black sesame seeds daily, I did this for monts and it helped a little, I then started taking Noni capsules twice a day and stopped the other.I have taken the capsules for one year and my platelets have been 100k or better every month. It droped down to 92 this time, I assume it is temporary. The only way I can prove that it is the Noni Capsules is to stop taking them and see if they drop, that is not going to happen. I wish I had something to decrease my white count 43K.
MemberDoreen,
You asked if there are any followers out there. You would be amazed how many there are. They don’t all post, but they follow your progress and pass good thoughts your way. Keep up the fight.
JackMemberHi Maribel,
I was dx with CMML April 03. Get to a doctor who specializes in Leukemia (CMML). I assume they did a bone marrow biopsy. We all have different symptoms. Ramiro has low platelet, I had low platelets and low WBC, now I have marginal platelets (94,000) and high WBC (34.5). I have been to St. Lukes(Rush Cancer Center) in Chicago. They are very good, if I had a choice, it would probably be Seattle, they seem to have the most experience doing SCT for CMML. Ramiro has age and health on his side, those are major advantages to fighting this disease and getting through a SCT. I will be thinking of you both and hoping for the best.
JackMemberIt is in our diet drinks, our desserts, everywhere. One more thing to eliminate from the diet. I think natural is better.
Jack
MemberThere are not a lot of us out there. I was dx’d CMML 4/03. I have had no treatment yet. MY RBC’s have always been normal, platelets range from 72K to 118k, my WBC have risen from 3.2 to 45 over the last 28 months. I lead a fairly normal life, work every other week, this requires out of state travel. My Hemo wants me to start Vidaza, but I have put it off, I don’t know how much longer I can, I just go month to month. I have weird problems like my knee swelling abnormally from bleeding, they said it was a sac located on top of the knee. I have a bruise the size of a platter on my hip from a slight fall two weeks ago. I can’t complain to much considering some of the others on the site. I fall more into the MPD catagory than MDS, that’s the problem, they don’t know how to catagorize us.
JackMemberHi Marsha,
Glad to hear everything turned out OK, you learned a hard lesson, some things you can’t handle on you own or put off. Keep us posted, your one of our success stories and we need happy endings.
JackMemberSuzanna,
This is wonderful news, it gives us all hope.
Thanks for sharing and fighting as hard as you did.
JackMemberHi Jody,
Thanks for thinking of me. I’m doing ok, my wbc continues to clinb every month by a couple points, they are now at 32.6, one year ago they were 7.8, everything else is ok, platelet stay around 100,000. I am still working and traveling on business every other weak. I have some problems with swelling and hemotoma in my right let. Glad you mom is doing ok.
Jack
‘MemberTerri,
I still have a lot of faith in the Noni Capsules, my platelets have not dropped below 100k since I started taking them 8 months ago, the only way I can know for sure is to stop taking them, which isn’t going to happen. It would be nice to hear if anyone else has had any luck with them. With the good there is also bad, my whites are at 35.
Jack -
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