How high should my monocyte levels be before I seek more treatment? I was diagnosed w/CMML in 2009 and did 6mos of Vidaza. Monocyte levels keep rising and are now at 28%. 54 yr old male. My drs. just keep telling me to watch and wait, but I don't feel comfortable doing that, especially since I am fighting a recurrent staph infection that keeps returning every month.
Hi there and welcome. Honestly I don't know a lot about CMML but from what I can gather online, it sounds like a monocyte level over 1000 indicates CMML. Obviously you already have had CMML, so I'm not certain what the level would have to be to indicate treatment for a reoccurance. Has your doctor told you when treatment will be neccessary?
My drs. just say watch and wait and come back in six months. But I am thinking about a second opinion now. The 1000 level you mention, translates to 10% monocytes, so on that scale mine would be 3,000, and rising. I am mildly anemic, and my hct, hbg is low too. CMML is such a rare form of MDS that it is difficult even for the Drs. to know what to do. That's why I was hoping someone in here maybe would know what is going on. I have had this for over two years now, which is beating the odds on the prognosis of 12-24 mos. That makes me want to do even more to get this controlled. I know there is no cure (except bone marrow transplant) but the survival rate of a transplant is only 30%. I just want to extend my life as long as possible, ya know?
Thank you MochaD for your response, I appreciate it...
With a rare condition, I'd think the best strategy is to find out which clinicians and researchers have focused on it. If that isn't possible? Well, I just took a quick look for you and I didn't find any.
So next, I'd look for any patient groups to at least compare experiences. CMML is apparently so rare it doesn't have a specific group. That leaves you with MDS groups as maybe being a close second.
As far as mortality stats, if you look at median survival, that doesn't tell you about the longest survivals. E.g., you are younger than the average CMML pt so you have better chances. Nor does it tell how many died from the Tx instead of the disease. Note the 5-yr survival rate, which can be encouraging. There's no reason you can't be in the 10% survivors.
"About 20 percent of CMML-1 patients and about 10 percent of CMML-2 patients survived longer than 5 years."
Also, what's your LDH? Any other markers tested?
Does your 28% apply to blood blasts? You haven't mentioned any BMBs being done - yet I'd think that would be automatic, so maybe your figures are for marrow and not blood.
Next, looking here I see that bortezemib (a well known drug for blood cancers) is in a trial for CMML, at Mayo and Arthur Anderson:
But they are not recruiting. Even so, a doc can use it off-label for you, if they want to take the chance. Having two big names like that conducting a trial adds credence.
Looking at the gov site:
I see different drugs in the pipeline, including Gleevec which is very successful in other blood cancers. I do see some monoclonal antibodies there. Aha, the bortezomib study is here:
But it was just a pilot, i.e., the very earliest stage of investigation. But that apparently showed it to be safe, as expected. IOW, it is not a risky last-chance drug. Neither most likely are none the MABs risky, they are very mild in side effects.
But then getting insurance to pay for off-label use is another story.
I also see more *harsh* drugs like idaribucin, which is an anthracyline like doxorubicin is.
But coming full circle, those researchers are focusing somewhat on CMML. So you could think about going to one of those centers that are doing a trail listed at clinicaltrials.gov. Or if Mocha can tell you what the big center is near you, I'd find out if anyone there has an interest in CMML and go there.
With your % already high and rising, I myself wouldn't be happy waiting. Your cytopenias are still mild, which is probably why your docs aren't in a rush for Tx. BUT if you can get on bortezomib or a MAB then my guess is its worth a shot. Normally we think of clinical trials as involving drugs that are brand new and risky. But to the contrary, a lot of them that I saw are well known and pretty safe - they just haven't been tested in CMML until now.
Another possible downside is in using a drug that is not effective while abandoning something that is effective. But in your case, you have no current TX so that rationale doesn't apply.
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