cmml

[Maribel]

Hi my name Maribel and my husband (Ramiro) who is 31 yrs old has been diagnosed with cmml. The 1st doctor said he had cmml and looked like it was turning into acute. The 2nd doctor said is definetly was not acute and it is just cmml. The 2nd doc said that there is no treatment for cmml and he will just keep a close watch on him as long as he feels fine. Ramiro feels perfectly fine and doesn’t feel any different than before.
His platelets are low and receives platelet infusions every 7-9 days.

Platelets range from 12K-54K
WBC 5.4
RBC 4.27

We think we might get a 3rd opinion. I have been doing some research and think we might try the Fred hutchinson research cancer center in Seattle.

Any info or insightwould be greatly appreciated.

Thank you,
Maribel wife to Ramiro and mom to 2 beautiful daughters

[Marsha]

Maribel,

I had CMML Dx in Feb 04, had a bone marrow transplant 11/04 an unrelated donor. I am from Wisconsin and went to the UW Hospital and Clinics, saw Dr Juckett. I am almost 9 mos out. I am fully grafted and making my own cells. my platlets are the last to come up but they are rising. Have a mild case of GVHD in my mouth and skin but can live with it. Trying to taper off meds slowly. I think since you have 2 different opinions, a 3rd would be wise. I know of people who are on a watch/wait program. I’m not saying that a BMT is the answer, but as far as I know it is the only cure. And with Ramiro being so young and otherwise healthy I would think that when he does need tx that would be an option. The “Hutch” is a very good place as well as MD Anderson. The UW Hospital/Clinics in Madison, WI follows the protocal of the “Hutch” in fact some of my lab work was sent there for analysis. Good luck to both of you.

God Bless, Marsha

[Jimbob]

Maribel,
I was dx with CMML in Feb 2003. Cleansed my system and improved blood counts with natural supplements and diet, under guidance of naturapathic/acupunturist. Had an unexpected leukemic event in Jan 2004 and had SCT on Mar 30, 20004. I am doing much better. Many have tried natural methods, which I do believe help, but it may well be that SCT is the only cure. Prebytarian St Lukes in Chicago is a good hospital for 2nd opinion. I believe that they also follow Hutch’s protocol. Being close to home and family support is a big plus. Good luck and prayers to Ramiro and you and all who support you.
Jim

[Jack_dup1]

Hi 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.
Jack

[greg]

Jimbob: Hello, Greg here. Could you detail again your dietary recommendations? i know you did it a while ago, but I’ve lost track. Again, my mom has cmml, low platelets, and we’re particularly seeking platelet stimulators. I think you said pineapple once. Thanks, Greg

[Jack_dup1]

greg, 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.

[Jimbob]

Greg,
I was juicing fresh, organic veggies mostly when I learned about platelet builders. I was not eating or juicing any fruit at the time as they tend to provide sugar on which bad cells feed. I did add oineappl to my very restrictive diet, usually 1 a day. Aslo, I got black sesame seeds from the health food store and took 1 – 2 tablespoons a day “as a snack”. Chewed them really thoroughly. I did try noni juice but only for a short time. I stayed away from sugar or sugar substitutes in any form except for stevia. did not each any processed foods or refined grains. Did eat some deep water fish, organic chicken or turkey (white meat) and, after a while, added back some lean red meats, actually at my naturapathic/acupunturist’s insistance. I was on MANY supplements. as lindaj has listed and I am back on some of them again now that I am off of all the SCT-related meds. I am not on quite as restriceted diet any more but still refuse to use any of the phoney sugars, deep fried foods (with a few exceptions) and most processed foods. btw, I used to love bacon, salami, and other processed and nitrated meats but no longer!
I just returned from 2 1/2 week visit with daughter in LA area and need a few days to recoup, but gettting better and beter day by day.
Jim

[Caroline]

Jimbob,

Do you think that this diet would help a 79 year old man? My Dad was diagnosed with CMML yesterday.

[Jimbob]

Caroline,
I do think that it would help but I d not believe it is a cure. Getting toxins out of the body will help the body fight off disease better than it could with all the toxins. I suggest you try to find a naturapathic physician and a nutritionist that have worked with leukemia and cancer patients for dietary needs.
Jim

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