Does anyone else have CMML?

On 3/5/2008 wendyv wrote:

Recently diagnosed with CMML. I live in Australia, and have been told there is no treatment, and just to "watch and wait" Has anyone else been in this situation? I am also told it is aggressive, and terminal!... but that I may have 4-6 years symptom free... doesn't really sound agressive, does it?

Hi,

How are you doing these days .. 4 months after your original post?  I have just been told (have refused biopsy thus far, but will get one soon, once I'm more educated) that my blood over the last 5 years are showing the Pattern of CMML.  Definitely NOT a pretty thing from what I've been able to learn the last couple of days.  I'm Only 38!

CMML is classified among MyeloDysplastic AND MyeloProliferative Diseases because it shares features of BOTH.  As far as "treatment" from your doctors, UNTIL they see (my understanding) WHICH WAY your disease will progreess, there is really nothing They can do except watch and wait.  This is not a very understood disease and there are no specific treatment protocols.

IF your blood shows that you have PDGF-R Fusion Genes (it's a long arm of chromosome 5(5q33) ) then Roferon-A .. GLEEVEC.... Imatinib...WILL HELP.  MD Anderson.org has seen rapid hemotologic improvement and sometimes molecular remissions in CMML patients.

IF you do NOT Have Fusion genes, in 2002 Hydroxyurea (Droxia, Hydrea) was the medicine of choice <different study> for CMML, but with modest success. 

Personally, am doing MEGA Supplementation and research on my own.  Layman's terms are best understood on LEF.org on their various Cancer Treatments and Protocols (from all over World).  There are also various Scientific Studies you can find on the net.  Just takes Lots of Time, Energy, Patience ... and FAITH, and Dedication!

DEFINITELY suggest Turmeric(Curcumin) 2400mg up to 3x day... GREEN TEA 2-3 750mg caps/day .. and up to 10mg Melatonin to start as you do your own research.  Then again, I am NOT a doctor.  I just know that I WANT TO LIVE and the Prognosis that I've read on various pharmaceutical studies is not that promising. 

YOU must become Very Involved and Educated in your care. 

I hope that you are doing well.  This is Certainly a LONELY route to be on.

 God Bless You and Big Hugs Your Way,

M.

Hi,

 I am from India and my father has been diagnosed to CMML-2.  Doctors has put him on VIADAZA , but he says that it will not be 100% cure.

 Have you heard on the BML sucess for patient with age 60 years.

Nimesh

On 3/5/2008 wendyv wrote:

Recently diagnosed with CMML. I live in Australia, and have been told there is no treatment, and just to "watch and wait" Has anyone else been in this situation? I am also told it is aggressive, and terminal!... but that I may have 4-6 years symptom free... doesn't really sound agressive, does it?

I was diagnosed with CMML two years ago. I am currently in a clinical trial  of vidazia (I may be mispelling). I have gone through 10 cycles with no noticable side effects. My blood and bone marrow counts are stable. Before that I was taking an oral Hydroxirea (Bad spelling again). That reduced my spleen to normal and I was feeling great. But it stopped being effective. Plan on being really fatigued and having some problems with other organs (bladder, prostate, stomach) because of enlarged spleen. Stem cell transplant appears to be the way to go. E-mail me if you have any questions. I'll give you my phone number if you want to call.

I was diagnosed with CMML almost eight years ago--at age, 65, too old for a bone marrow transplant. Have been following many of the suggestions for foods and supplements in John Boik's "Natural compounds in cancer therapy" (2002). You can download it on the web for $25 from the publisher, Oregon Medical. The book describes curcumin (tumeric), green tea, etc. etc. I take about twenty of these natural compounds. Also follow recommendations by Dr. Steve Martin at www.grouppekurosawa.com. I wish I knew which of the compounds are effective, but Boik says that using multiple compounds has a synergistic effect (2+2=5). 

My oncologist says that vidaza and dacogen seem to help some CMML patients, but she doesn't think I am bad enough to go that route yet.

God Bless.

On 7/5/2008 Best Isnt Easy wrote:

Hi,

How are you doing these days .. 4 months after your original post?  I have just been told (have refused biopsy thus far, but will get one soon, once I'm more educated) that my blood over the last 5 years are showing the Pattern of CMML.  Definitely NOT a pretty thing from what I've been able to learn the last couple of days.  I'm Only 38!

CMML is classified among MyeloDysplastic AND MyeloProliferative Diseases because it shares features of BOTH.  As far as "treatment" from your doctors, UNTIL they see (my understanding) WHICH WAY your disease will progreess, there is really nothing They can do except watch and wait.  This is not a very understood disease and there are no specific treatment protocols.

IF your blood shows that you have PDGF-R Fusion Genes (it's a long arm of chromosome 5(5q33) ) then Roferon-A .. GLEEVEC.... Imatinib...WILL HELP.  MD Anderson.org has seen rapid hemotologic improvement and sometimes molecular remissions in CMML patients.

IF you do NOT Have Fusion genes, in 2002 Hydroxyurea (Droxia, Hydrea) was the medicine of choice <different study> for CMML, but with modest success. 

Personally, am doing MEGA Supplementation and research on my own.  Layman's terms are best understood on LEF.org on their various Cancer Treatments and Protocols (from all over World).  There are also various Scientific Studies you can find on the net.  Just takes Lots of Time, Energy, Patience ... and FAITH, and Dedication!

DEFINITELY suggest Turmeric(Curcumin) 2400mg up to 3x day... GREEN TEA 2-3 750mg caps/day .. and up to 10mg Melatonin to start as you do your own research.  Then again, I am NOT a doctor.  I just know that I WANT TO LIVE and the Prognosis that I've read on various pharmaceutical studies is not that promising. 

YOU must become Very Involved and Educated in your care. 

I hope that you are doing well.  This is Certainly a LONELY route to be on.

 God Bless You and Big Hugs Your Way,

M.

So very sorry for the long delay in replying... i only just came across your message!

It is now 16 months since diagnosis. Am finally over the debilitating depression, and moving on with LIFE.

 How are you going? Have you had that BM biopsy, and what has it told you? Hopefully, it showed that your Dr was wrong  and he should not have suggested the diagnosis.

I am back at work, my counts are stable, and I try to stay positive and happy. I do yoga, take many supplements,( guided by my doctor who strongly supports natural therapies) meditate, and have a natural health team who support all I am doing. I am also raising a 16yr old granddaughter, and that all keeps me very busy.

Do stay in touch and I would love to know how you are.

Wendy

On 2/9/2009 cmml52 wrote:

 

I was diagnosed with CMML two years ago. I am currently in a clinical trial  of vidazia (I may be mispelling). I have gone through 10 cycles with no noticable side effects. My blood and bone marrow counts are stable. Before that I was taking an oral Hydroxirea (Bad spelling again). That reduced my spleen to normal and I was feeling great. But it stopped being effective. Plan on being really fatigued and having some problems with other organs (bladder, prostate, stomach) because of enlarged spleen. Stem cell transplant appears to be the way to go. E-mail me if you have any questions. I'll give you my phone number if you want to call.

Thanks for your reply, and I am sorry for the delay in mine.

How are you doing now? I would love to have your phone number, as I have never actually spoken to another CMML patient. Would love to talk.

I am still well and symptom free. I don't follow my counts too closely any more, as it scared me! So now I just listen to my body, which at the moment says I feel great.

Look forward to hearing from you.

Wendy 

I've gotten some private mail regarding my surviving almost eight years with CMML. I will just copy my private reply here for public distribution:

Yes, it is possible to keep CMML at bay. As I described in my earlier
post, I use lots of things -- see the Boik book available on the
internet for download for $25. Maybe I'm just lucky and/or the CMML was
discovered early in the game, but I believe the healthy eating and
supplements have helped.

My blood results were better after I spent a
month in China, living with Chinese families. Maybe the green tea,
seaweed, tofu, vegetables, etc. and NO-SUGAR diet, plus lots of
exercise (I lost ten pounds) made a difference. My blood results went
down a month after I returned to the US, so now I'm experimenting with things
like no sugar, exercise to lose weight, etc. I get a blood test every
month, so that will tell me, maybe, if I'm doing the right things.Oh,
thinking positive is also recommended!

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 All,

I just got a wonderful book out of the library: Anti-Cancer by Servan-Schreiber. He's an MD and Ph.D. and had cancer and decided to research the hell out of bodily conditions that are conducive to cancer. It's really comprehensive and I even learned some new things.

For example, inflammation is created by cancer and also facilitates cancer. One of the causes of bodily inflammation is fat tissue.

Another point is that the meat, eggs, and dairy that we eat have way too much omega-6 oils, not omega-3 which we need. Why too much omega-6? Because animals are now fed grain, not grass. Grass-fed animals will have the omega-3 that we need.

Lots of good stuff in the book. Get it!

Best wishes all,

Walrus