Undetectable

Yeah, there isn't much sweeter word for a CML patient, or any cancer patient for that matter. My PCR results from my 2 year mark in Ponatinib came back as undetectable. I had been hovering at weak positive for almost a year, being oh so close, but just not there. I got the notice of waiting results late one night, and my heart rate shoots up whenever I click on the test link. And there it was, undetectable.

About 15% to 20% of CML patients reach this milestone over time. While I don't think it is that significant prognoses wise, mentally it's huge. The official status is Complete Molecular Response (CMR), ie. they tested 100,000 cells, and none of them are CML. Most trials and publications look at the prognosis of someone that reached Major Molecular Response (> 0.1%), I haven't found anything that calls out the CMR subgroup specifically.

Now before I get too excited, simple math tells us when you test 100,000 cells and there is about 1 Trillion cells in the body, undetectable does not equate to no CML cells remaining. Cured is a very difficult term for CML patients, since all it takes is one sleeping CML cell to wake up, and start reproducing. But what is does allow me to consider, is potential future participation in studies that take you off the drugs once you have been undetectable for a set number of years. At least now, the clock is ticking on being CMR. But for now, I will appreciate it for what it is.

18 Month PCR results...

Yeah, no kidding, it's already 18th months on Ponatinib. Still staying on 60 mg, and side effects are manageable. My blood counts were steady compared to 3 months ago, and my PCR came back with "Weak Positive" again. This is the 3rd weak positive result I've had in 4.5 months, so either the decline is just happening much slower, or possibly I have bottomed out there. While it would be wonderful to be in PCRU (Undetectable), I won't complain about holding steady at weak positive either.

The tests that show the cytogenetics are still outstanding, they can take up to 3 weeks so I won't know for another week probably.

9 Month Checkup (Post Ponatinib)

Wow, I can't believe it's been 9 months since I started the trial. A lot has happened recently. My doctor was offered a chair person at University of Utah, and I am very happy for him and the opportunity it gives him. The silver lining was that the replacement doctor is Dr. Mauro, someone who is equally recognized as one of the top world experts on CML and shares Dr. Deininger's increadible humanity. Dr. M treated me the first week down at OHSU, so it was an easy transition back to his care.

As much as I'd like to feel relaxed now that I reached CCR at 3 months and MMR at 6 months, waiting on results are surprisingly difficult. Unlike previous tests where I felt I had nothing to lose, now I feel that I have everything to lose. It's nerve wrecking to say the least.

So, down to the numbers. I am still Fish and Cytogenetic negative, and my PCR is 0.039% this time. Statistically that is roughly the same as my 0.066% 6 weeks ago, and my 0.036% from 3 months ago. Slow and stable.

Breaking the silence

I have heard from a few friends lately that they were wondering what was going on with me, based on the lack of postings on my site in the past few months. I have kept myself from posting anything trial related, which has limited my ability to share my CML journey. After I found my postings about personal thoughts regarding our 3 year old Christian posted verbatim on a Yahoo financial discussion group back in December, I felt a line had been crossed. All along my intent of the blog was simply to keep friends and family up to date on what was going on, as well as hopefully benefit others who are either starting their CML journey or at a crossroad. I have often found the advice and suggestions of patients and caregivers invaluable in evaluating my own predicament, as well as learning how to communicate with my own medical team. Knowing that what the difference between a lavender and green cap on a vial, has already once ensured that a PCR test wasn't missed, even though it was scheduled.

Disclaimer : If you are here looking for medical insight into helping you make a financial decision on the drug company Ariad, please keep the following in mind:

1) I have been, and still on 60 mg dosage. This is not what will most likely be FDA approved, so hence statistically I should be excluded from the sample that evaluates effectiveness of the drug.

2) I am a statistic of one. What works or doesn't work for me, may not translate to others.

I have become too painfully aware that there is no single medicine that works for everyone. There are people who Ariad doesn't work for, and I continue to pray that they find something , or if they have to go through a transplant, they are in the best possible medical hands and have faith to carry them through. All of us are one test away from a crossroad in our lives, so as CML patients, we're only as good/bad as our last test.

So what is happening with me? Well, I have been on 60 mg for more than 7 months now. I officially reached Major Molecular Response at my 6 month, and I achieved Complete Cytogenetic Response at my 3 month. I continue to maintain both MMR and CCR. Combined these are a major milestone with treatment of CML, so it has given us some breathing room. Officially my log reduction is 3.5. My white count that early on was in the 2k range, has been in the 3k range for the past 3 CBC's. My platelets are also in the 60 to 70k range. Everything is pretty stable, with no Grade 3 or Grade 4 side effects. The most inconvenient side effects are fatigue and some other minor ones. The fatigue is hard, given that I have a draining job at times, I am usually spent by the time the kids go to bed at night, and I'm lucky if I get a second wind. Unfortunately (or fortunate as it may be) I love my job and what I do, so I do pour a lot of myself into it, and can't even imagine slowing down, but I may try to take some personal days this summer just to give myself some days of rest.

Here is my log reduction timeline:

  

I am down to travelling once a month to OHSU in Portland, and I do one CBC a month here in Seattle. I do have to continue to have a Bone Marrow Biopsy (BMB) every 3 months per the trial protocol, but somehow they are getting easier and easier. It probably doesn't hurt that the last 2 times I have opted for drugs through an IV. If I wasn't in the trial and I had the results I have, I believe BMB would have gone down to every 6 months, and then yearly after that.

So if you are a patient or caregiver of someone with CML, then I want to share with you that there is hope out there. The progress that is being made in new drug therapies is amazing, and you will want to make sure that you consider all your options before making a decision. Transplant may still be a viable option for you, but for many others, there are new options out there that are worth considering.

With all that said, I want to call out that Tyler is still fighting the battle, harder than anyone I know. He finished his recent chemo therapy, and is now back on Tasignia. His white counts are coming up to reasonable levels, but they are still searching for the best solution out there for him. Please keep him in your prayers. If you already are not following his blog, here is a link to it.  http://bledsoebattle.blogspot.com/ 

Keep hope alive,

Hans

#1303 in Zavies Club (which you get when you're CCR).