3 replies to this topic

[glennbader]

I am newly diagnosed with CML on 11/16 of this year and new to this board.  I've been reading posts for a while and am finally joining in so forgive me if I'm not following any protocol quite right.

I started at WBC of 191,000 and the local hematologist helped bring it down using hydrea originally and pherisis for three days and then started on 400mg of Gleevec.  My blast count was 2% and my PCR was 0.940.  My WBC levels continued to drop nicely until they fell too low and then they paused my Gleevec when my WBC was 2.1.  The next week my WBC dropped to 1.1 so the Gleevec pause continued.  I was nervous about my counts being so low and getting an infection and also about pausing my chemo.  In talking with the doctor he said I also had an additional chromosome split and he also said he was thinking of moving me to Sprycel.  I got a little nervous after hearing about the split and made an appointment at the Mayo clinic in MN for a second opinion which is close to where I live.  I got in right away and saw a hematologist this past Monday.  He said I have 9;22;12 all combined together and maybe 2 participating but this is not clear.  He said there is not much known about this combination to tell how the addition of 12 will impact my response and they haven't had a case with this combination at Mayo.  He wants to keep me on Gleevec but at 300mg instead of switching to Sprycel.  He said this is still a theraputic dose and thinks I may just be having a hard time metabolizing it.  He is keeping me off pills this week still (this is my 3rd week) and will start next week once my WBCs are good and strong.  My counts were up to WBC of 2.5 this past Monday and everything else was looking good.  If my counts drop again he will switch me to Sprycel right away.

I'm a bit nervous about being off my pills for this long and also wishing I knew more about my complex variation.  Also wondering if having a split like this means I should get an additional opinion from one of the other cancer centers since Mayo hasn't seen it?  Anyone with any words of wisdom for a new guy?  Thanks Glenn

[Trey]

These complex translocations do not necessarily mean anything.  The key is whether you respond to drug therapy.  So far you have, so that is an initial good sign.  These additional chromosome involvements are only understood  by looking at previous cases, if any.  Often the additional chromosomes are benign, so they don't do any harm.  The problem occurs when two pieces of chromosomes come together in a way that causes some new signal leading to a negative effect.  It will not help much to try to find an Onc who has experience with your specific translocation since you likely will not find one.  And the Mayo Oncs can try to find cases in literature.  I found one reference, but it was not very enlightening.  But overall, I would not waste much effort trying to get multiple opinions since the key is longer term drug response, and you will know that in the coming months.

Before the TKI drugs these variants were more of a problem.  Now they are often not an issue.  Only time will tell.  The drugs will either work or they will not.  If they work, all is well.  If not, you will need to try the various CML drugs until you find one that works. 

As for your low counts, once again we see Oncs giving newly diagnosed patients Hydroxyurea (HU), leading to a crash in cell counts.  The TKI drugs should be started without HU.  When will they learn???

[glennbader]

Thank you Trey!

[sharcare]

Hey Trey,  Just curious, how do u know so much? 

U remind me of my husband who is a encyclopedia when it comes to vitamins and nutrition.  I tell him he should go to school and make some money out of all he knows!