Re: Quick Check In -

[Guest guest]

Hi - nice to see you back on the list. I've been something of a

slacker myself for quite a while. Well, not really; I'm just too busy with

other stuff and I also don't think about CML that much anymore. I'm not

naive enough to consider it over any done with, but I guess I've just gotten

used to it.

I'm sorry your DVT is still causing you trouble. Are you still taking

Coumadin, and if so, do you know how long you'll have to stay on?

Stimulated by your check in, here's a bit of follow up on myself.

Despite the problems you and a couple of others had after long breaks from

IM, I continue to cycle one month off and two months on. I've been doing

this for nearly 3 years now, though not always on that schedule. With the

exception of Tessa Holyoake, who thinks the approach is promising and who

has gotten phase I of her cycling trial underway, most of the CML docs I've

spoken to think this a dreadful idea, but I remain happy with it for now. My

qPCR fallen from 0.003 to 0.0002 to undetectable since I started, and

cycling has relieved my side effects a good deal. You'll recall that I was

hoarse due to IM-induced laryngeal edema for years. Well during my most

recent break starting in late July, this symptom went away and hasn't come

after more than 5 weeks back on IM. The hoarseness will probably return at

some point, but it's felt great to be able to sing again after croaking like

a frog for so long!

I'm also able to get out in the sun a bit while I'm off IM, which puts a bit

of color back in my skin, and hence some vitamin D into my system (now

there's this recent evidence that Vit D may be a good cancer-fighter - I

plan to track that literature). This feels good and makes me seem less like

a ghost all the time.

The loose stools have also been less of a problem, and my hematocrit

rebounds during the breaks so I have to use Procrit less often.

Perhaps most significantly, the Gleevec-brain is reduced much of the time as

well - though you also might argue that it's Gleevec-brain which is deluding

me into the cycling approach in the first place!

In telling about my experience with cycling, I want to reiterate that I'm

still not recommending it to anyone. It's based on assumptions which are

not shared by most researchers. These assumptions are 1) that since my

quiescent CML cells are not killed by continuous therapy, the sub-lethal

dose of IM that they're receiving might actually promote mutations; 2) that

every time I'm off the drug a few of the stem cells might wake up and cycle,

thus rendering them vulnerable to IM when I restart it; and 3) that approach

might defer or obviate any (as yet unknown) long-term adverse effects which

could be caused by continuous IM use, by giving my system time to recover

from time to time.

Who knows whether I'm right or not. I could be way off base and end up

getting resistant and accelerated disease. In that case I'll be really,

really sorry of course - but for now I'm happy with my approach.

Btw, I plan to switch to a heme/onc who's closer to home and who, though

skeptical of what I'm doing is also impressed by the amount of thought I've

given to this approach and interested to follow along. His lab has developed

a new PCR test that can sample for all the known BCR-ABL mutations at once.

If he can find any of my phillies (he believes his test to be much more

sensitive than most qPCRs in general use), he'll be able to tell whether any

of them have mutated. Of course even if he finds any mutations it won't be

possible to know whether these were caused by cycling, by IM itself (there's

some evidence that IM is actually mutagenic, as you probably know), by the

mutagenic effect of the quiescent cells' bcr-abl kinase, or whether the

mutations are just random events. Still, it will be interesting to know

whether they're there or not!

I realize that this has all been about CML, and not about what's going on in

the rest of my life, as yours was. I guess that will have to wait for

another post!

Cheers,

R

> Date: Wed, 21 Sep 2005 23:03:13 -0500

> From: " jennifer g " <jenniferg@...>

> Subject: Quick Check In

>

> Hi all,

>

> I am sorry that I don't keep in better touch with my CML friends. I

> don't remember there being a day yet that I forget about having CML, but

> I guess I'm just putting it on the back burner right now.

>

> I started graduate school part time after Labor Day, and it's turning

> out to be a big challenge while also working full time. I'm probably

> spending about 15 to 18 hours a week on studying and homework, which is

> typical for taking 6 credits (estimate 3 hours of work per credit per

> week). Biostatistics is a tough one! But I like having those " ah-ha "

> moments where something actually crosses the Gleevec-brain barrier. I do

> find that I have to re-read my texts a lot and take my practice tests a

> lot to remember things, which only adds to the workload.

>

> I recently adopted a shelter dog again. Some of you may remember that I

> had to euthanize my last dog last summer at age 14 and a half. This new

> one is part lab perhaps mixed with greyhound, as she's got very long

> legs (making her very tall) and an enormously deep chest. She's 70

> pounds and underweight. She's a sweetheart but needs some work on

> housetraining and separation anxiety!

>

> I also continue to work with Team In Training. I am scheduled to head to

> Phoenix in January for the marathon/half-marathon, but I'm not sure I

> can get the time off to do that. Are any of you going out there for the

> races? If so, that may be incentive for me to go.

>

> As for CML, I guess I am doing OK. My last PCR test was positive and the

> FISH was ever so slightly positive. But they re-ran the PCR and it was

> negative the next time. I don't understand that. Any thoughts? So we've

> just decided to watch and wait for now, with another bone marrow likely

> in December or January and some bloods in the meantime.

>

> I am still having some trouble in my leg from the DVT (blood clot) I had

> in late May. But my breathing problems have essentially gone away in the

> wake of the clots to my lungs. I have a host of new side effects to

> contend with thanks to the addition of warfarin (Coumadin) to the

> medication mix. I am a naughty patient and totally disregard my warfarin

> diet, which means I need to just get my blood checked more often and my

> meds adjusted more frequently. But it's less stress for me. :-)

>

> I try to keep up with you all, but that damn continues to

> periodically bounce me, which means I don't get the emails - and don't

> realize it.

>

> Anyway, I think of all you 'old-timers " frequently, and hello to the

> newbies. One of these days, I hope to work on the Web site again, but

> unfortunately it's too large for me to effectively maintain by myself

> anymore, especially given my schedule. I'm sorry about that.

>

> jennifer g.

> www.cmlsupport.com