There is no cure for CML. The only way to keep CML in “remission” is to take the medication – each and every day. I’ve learned this lesson first hand. I stopped Gleevec almost 9 weeks ago (a medication holiday). At the time of stopping I was in hematologic response, a complete cytogentic response, and a minor molecular response. This basically means that everything was going in the right direction.
The medication holiday has been good in that it has allowed my liver to recover. My liver enzymes are still high, but they have returned to within a tolerable range. I’m sure in the next few weeks the enzymes will totally normalize. That is the good news.
The bad news is the “holiday” has had the unintended consequence of allowing the cancer to restart the replication process. I lost the cytongentic response. The cytogentic test (called a FISH test) looks for the PH+ chromosome. The test examines 200 cells for the abnormality. Prior to the holiday, all 200 cells were clear of the leukemia. As of last week, 5 of the 200 cells tested positive. It could be worse, at diagnosis all 200 cells tested positive.
The molecular response has also changed. The PCR test looks at a large number of cells (100,000) for the BCR-Abl gene (the naughty product of the PH+ chromosome). At the start of the “holiday,” the amount of BCR-Abl genes positive was 0.834%. This has increased to 9.794% (again could be worse, at diagnosis it was in excess of 53%).
So, all of this means it is NOW time to restart medication therapy and quit this holiday! I should get the new medication – called Sprycel sometime next week. Tick tock.
Pearls Before Swine. Is the world ending on May 21st? I sure hope not! I've got some stuff to do before then!
It’s been a while. Here’s what’s happening:
The good news is the steroids are doing their job – my liver enzymes are gradually returning to normal. So, there isn’t a new, unrelated issue going on with my liver. Yay! The liver was just really irritated with the Gleevec and was trying to tell me to stop. I have now been off Gleevec for 8 weeks. I’ve been on prednisone (oral steroid) for about three weeks. I am gradually stepping off them…and should be steroid free by Saturday. I forgot how much I hated prednisone – the weight gain, the moodiness, the weight gain.
The levels of my red blood cells, hematocrit and hemoglobin continue to rise. But, I do not have Polycythemia vera (a blood disorder which causes overproduction of red blood cells). Dr. Galatin doesn’t know what to make of the increases, and this will continue to be monitored.
I should start Sprycel as soon as possible. I was originally told 8 weeks was the longest I should be off medical therapy. Tick-tock. I put a call into Dr. Galatin, but he is out today. Hopefully they can fax a prescription to Medco tomorrow. Walgreen’s can fill a prescription in 15 minutes. It takes the mail order pharmacy 7-10 days. Argh.
Most of us know the phrase “An apple a day keeps the doctor away.” I am starting to think I should have eaten more apples.
Dr. Galatin called me. The consensus among the three doctors (Dr. Galatin, Dr. Coutre, and Dr. Shah) is that the increase in my liver enzymes 6-weeks post discontinuation of medical therapy is rare. Very rare. Yay for me!
The good news is the ultra-sound revealed there aren’t any blockages or masses in the liver or kidneys. The bad news is the liver enzymes are still rapidly rising. They showed signs of slowing down, but then this week they jumped up at a faster rate. Several issues have been ruled out. The cause for what’s going on is still unexplained.
Dr. Galatin prescribed Prednisone (an oral steroid) to try to bring the liver under control. If that doesn’t work he says I will need to have a liver biopsy performed. I am praying the Prednisone will work (the liver biopsy sounds as bad or worse than a bone marrow biopsy). Prednisone is a nasty medication, but the side effects should be limited with short-term use. Another set of STAT labs will be performed on Thursday, May 5th. I will see doctor Galatin the following day. At that point I will have been off the Gleevec for 7 weeks. Eight weeks is the safe limit for being off medical therapy.
Oh how I miss my Caltrain days...
Dr. Galatin ordered another round of tests which I had done yesterday. He ordered them “stat” (for same day results) which I am trying not to read into too much. Despite ordering the results stat, I didn’t hear from the office until today. Argh. I don’t like waiting. Especially when I know the results are available.
My ALT/AST levels are continuing to rise. The ALT enzyme rose 37% in one week and is now 12 times normal. In addition, the level of Alkaline Phosphatase (another enzyme produced in the liver) is now above normal. This is starting to indicate a real problem.
The levels from my CBC (Complete Blood Count) are also showing some variances above normal. The Eosinophils count (EOS % and EOS absolute) are both above normal. I think I am losing my hematolgic response. Insert swear word of choice here: “@*!$#$!”
So, I go to get an ultrasound of my liver this afternoon. Results in 2 days. To be honest, I’m worried. However, not pushing the panic button yet.
May you find the golden egg.
Tomorrow I have another blood test. We will be checking my ALT/AST levels. The hope is that the numbers are starting to retreat. In addition, a new problem surfaced last week. My Hemoglobin and Hematocrit are rising for no apparent reason. These cells go together and are responsible for carrying oxygen to through the body and is also a measure of the volume of red blood cells in the circulatory system. The rise in these numbers basically indicates that my blood is getting thicker (my blood really is thicker than water).
My fear, and it is hopefully unfounded is that there is something called Polycythemia vera going on. Basically, it is a condition where the bone marrow over-produces red blood cells. The treatment is akin to bloodletting – the patient “gives” blood until the amount of red blood cells are back to normal. In my case, the blood would be discarded since nobody wants blood from a leukemia patient.
Well. We’ll find out with tomorrow’s lab work. This is 4 weeks in a row. I hope Sheila (the-blood-tech-lady) is there tomorrow. She is one of the best techs I’ve ever been to.
Finally. Have a very happy Easter and may you feel Jesus’ love in your life.
As some of you may know, I “work” as an tax accountant. I am surrounded by tax matters day after day after day. So, in “honor” of national tax day, here are a few tax-related humorous cartoons and a medical update too.
The "Dear IRS" can also be changed to "Dear Franchise Tax Board."
As of this week (April 12th), my liver enzymes are still rising. They’re 6 1/2 times the normal upper range. Dr. Galatin consulted with Dr. Coutre at Stanford (a nationally recognized CML expert). Dr. Coutre is not “worried” about my enzymes – they’ll come down. However, Gleevec is no longer an option for me – I will have to take Sprycel, one of two second generation drugs. This may not be a bad thing (unless of course I had to pay for it myself – it’s $8,000 a month).
The plan is to recheck my enzymes every week until they start going down (I am on a first name basis with Sheila the lab tech at LabCorp). I will restart medical therapy no later than two months since stopping Gleevec, whether or not the liver enzymes are cooperating. This coming Monday (April 18th) will be four weeks.
This form is 10 years old, but still applicable today.
I had another blood test on Monday, April 4th. My liver enzymes continue to rise (ALT and AST). Dr. Galatin consulted with another hematologist. The plan is to recheck again this coming Monday. If the enzymes are dropping, then back on Gleevec. If they are still rising, then switch to a different medication (Tasigna).