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).

When 73k is not so bad

With everything that has happened lately, I decided to step out of the world of CML, and have an annual physical with my regular doctor, here in Woodinville. He was the one who diagnosed me with Leukemia about 1 1/4 years ago, and I hadn't been back to see him. They actually had me come in a few days early to give a blood sample so that we could discuss the results in person. The strange thing is that a blood draw these days is so routing that I don't think twice about it.

It was a surprise to me, but he knew most of everything going on with me, my results from SCCA and OHSU. I guess I didn't think much of it, but I always listed him as my primary physician, and he gets a copy of all reports and results. I was pleasantly surprised to find that he knew a lot of my case, although not the developments in the past month. So it wasn't so hard to get him caught up. He pointed out that I have the distinction of being his record WBC patient, something I'm not necessarily proud of.

He shared with me a funny story, that he got paged on Thursday night, at 12:02 AM. The page was from the lab, and he called back and they reported that there was a problem with my tests, and that they found my platelets to be 73k. They had double checked, and they were sure that the tests were accurate. He thanked them, and then looked up my latest test results from OHSU and saw that they had been 63k just a couple of weeks ago, so he knew right away that wasn't a problem. In fact, 73 is actually a positive sign for me :) It's strange how reality changes when you're dealing with something like Leukemia.

Otherwise, things were not bad. I have to improve my good cholesterol, but on the plus, my bad cholesterol was outstanding. My Triglycerides are very high, but they have been bouncing more than a 3 year old on a trampoline....My thyroid is slightly high, although steady compared to when they measured in over a year ago. The only thing we will really do short term, is healthier eating habits, get more exercise, and work on stress reductions.

Back and Public

I locked down the blog, but have decided to reverse the decision. I will defer from publishing any of my results on Ariad. GIven that people can have from a great response, to no response, it's safe to say I'm somewhere between those points. For now, it's a wait and see, all I can safely say is that I'm not any worse off.

 

For those looking to learn more about Ariad, please do contact me, while my results may not be typical, there are clearly people out there that are helped by the drug. I can also help anyone that is trying to learn more about trial procedure, it's been an interesting past 3 months. Thanks agains for the kind words of support

3 out of 4 are in

We are seeing results trickling in, so far 3 out of the 4 are in (one is still preliminary, but Dr. D says that tends to always be the same as the final. He is feverishly working on my behalf, he was even e-mailing me at 11:30 last night, so I can't thank him enough for his efforts (and his team) on my behalf. I am holding off sending out results until we have something more conclusive, until then appreciate the patience. Trust me, it's super hard to wait around for news like this.

 

I will be sending out the summary by e-mail to all those who have been following me and supporting me through this process. There is an expression in Norwegian "Tap og vinn me samme sinn" (translated to Lose or Win, with same frame of mind). So I am prepared mentally for either which way the results go.

3 month biopsy (from start of Ariad trial)

I can't believe how fast time has gone by. It just like last week that we scrambled to make our way down to Portland on a Friday afternoon, so that we could start the trial. Yesterday was our Day 1 of Cycle 4, which roughly translates to the 3 month checkup. Yesterday involved getting an Echo Cardiogram, blood draw of like 12 tubes, and then the always fun BMB. The first one at OHSU was with Dr. Mouro, where as this one was with Dr. Deininger. Unlike all previous BMB's, Dr. D does it while you're lying on your side, where as the others have you laying on your stomach. I was a little skeptical since my bones are known to be 'stubborn', and I envisioned being pushed right off the table when trying to get through the bone into the marrow. But surprisingly, it seemed to go rather smoothly, and quickly. Of course that could be contributed to Valium and Morphine that they injected into my IV right before they started. I hit a beer level of 12, which is a new high. That is my personal scale on how relaxed I feel, so basically I felt super drunk.

 

The ride home was basically sleeping it all off, thank god for Cynthia as the driver. Today was the usual soreness, and the drugs wearing off. And of course, the waiting on the results. They will probably be trickling in over the next week to 10 days.

Last week has been scary

As most of you know, our close friend Tyler had a transplant a year ago. Ever since October, I have preparing myself for the same path ever since I got on Sprycel.

 

After about 1 year of being PCRU, CML started showing up again on his tests. It was miniscule to start with, but at the 1 year anniversary post his transplant, it shows up with  cytogenetic of 2/20. They decided to do a DLI, which is basically a boost of white cells from his donor (father). After being off Tasignia for a month, he suddenly found out that he was close (if not in) blast crisis. His White count didn't show it, but he had 17% blasts in his blood. They also discovered some tumors that are related to the CML white cells, and they are looking to treat those with localized radiation.

 

The good news is that after 3 days on Tasignia, his blasts were down by 50%, and at least he is responding to the drugs again. But it just shows how fast things can change, and that a transplant not only carries risks, it doesn't guarantee results.

 

CML is a strange illness. For some it's a wild roller coaster ride, while others as my mother's friend from High School who was on the Gleevec trial, is doing great 12 years later. All we can do is grab on tightly and go for the ride, we have no other choice.

 

PS. In my warped mind, I was thinking that if I had to make the decision of a transplant back in November, I may have wanted to time it such that I was 'stuck' watching March Madness while recovering....If you ask Cynthia, my real illness here is March Madness and my love for SU Basketball....Go Cuse !