Friday, March 28, 2014

Beginning 4th cycle of Ibrutinib

Sorry for the long delay. I thought I had updated this, but as it turns out I just posted my updates on facebook. I realize some of you who are following aren't FB friends with me and are doing research on CLL/SLL and want some information so I'll try to update you all.

I started my trial January 2. I experienced very little discomfort that I can attribute to the drug... maybe some intestinal issues. But nothing that I hadn't been having with Revlimid. Unfortunately the neuropathy I had been having with Revlimid seems to be permanent. I have been off that for almost 4 months and my feet still have an aching numbness. It is annoying because it screws with my balance.

My BP started climbing a little when I went in to begin the second cycle and by the third cycle it was out of control. I was having headaches and felt like my head was going to explode. When I went back to Champaign for a visit they had my local internist get my BP under control, that took about a week, but DR Walker was great: he had me text him my BPs twice daily and adjusted my meds that way. I admit it was scary, though. The readings were off the scale. I went back on the study drug after a week and a couple days.

Even in that week, I felt the nodes staring to grow again, I think. It's hard to be subjective about tiny changes. Any way I "finished" my third cycle yesterday even though I now have several days worth of leftover medicine. I went for the check up yesterday

My appointment with my oncologist went very well yesterday. Blood counts are good. In fact, my platelets are higher than they've been since I started treatment and are finally in the normal range. The high blood pressure is definitely caused by the Ibrutinib. They don't know why. But at least mine seems to be under control now.

The drug company didn't report it as a possible side effect. Maybe they knew, maybe they didn't have data that was statistically significant enough to report it. They will after this study.

It is just one of the facts of life in a clinical study. You may be one of the people who has an adverse reaction to the drug. The fact is: the more active the drug, the more likely it is to cause a side effect. So the question in every treatment decision is: is the cure worse than the disease?

In my case, it means more daily drugs that I have to take, but I still feel generally good. My cancer is shrinking. So it still looks like a winner to me. Now here is the meat and potatoes for those of you thinking about going on an Ibrutinib trial. If your quality of life has deteriorated, it is up to you to decide if the risks are worth it. For me the answer was yes. My nodes were growing out of control. We never know what side effects we may or may not get. And it is true that I have paid a price for my participation in these studies. My thyroid no longer works, I have neuropathy in my feet  and now high blood pressure. But my quality of life is still better than it would be if I hadn't done the trials. Because if I hadn't the only other option is a stem cell transplant. And I will reiterate that they had a match for two units of cord blood, but the match wasn't good enough for me to take that chance. An SCT is a possible cure, but not a guarantee in any case. And the side effects from an SCT include a 40% mortality rate. I did not like those odds and it is really hard to get the data specific enough to know what my personal odds were with the match on the weak side.

You can treat all of my side effects with drugs, but they don't have a drug to treat being dead.

These were my personal considerations. Yours may be different. Had I had a good match, I might well have opted for the transplant. It's a huge step, but it is the only known possibility of a cure. Had it worked I might well be disease free today. I just didn't have a good feeling about the odds in my case.

At any rate, I am happy enough on the Ibrutinib trial. It is working and I can tolerate the effects and it buys me a few more years to figure out the next move or for science to find a way to really cure this.

Wednesday, January 8, 2014

Polar Vortex Visits its Wrath on my home and Family

For those of you living anywhere but the USA, you may not realize, that this week was what the Vikings considered Hell: a place of bitter cold. You've seen Thor, right? You see the frost giants. Well that little bit of mythology was tossed into Illinois and while I was in Texas proceeding with my therapy, all hell was breaking loose at home.

Although we had a furnace checkup at the beginning of the heating season, our furnace has been unable to keep up with the bitter cold and overnight temperatures in our house were as low as 55 degrees Fahrenheit. But that's not the worst of it. With temps that cold we actually had a pipe burst. So Jana called me yesterday in tears because nothing was going well. But she handled it well. She called the right people who eventually made it (we are not the only ones with these problems).

Come to find out, a section of insulation over the pipes in the second floor bathroom had been folded over leaving the pipe exposed. The question is when did this happen? has it been like that since we bought the house new? Or (as I suspect) did it get moved when our service man checked out all the vents in the attic crawl space of the garage at the beginning of the season? Hard to say. We have wintered there many seasons, but this is the first winter we have coupled a low house temperature with extreme cold.

Anyway, more money to fix the pipe and the hole he had to cut in the ceiling to fix the pipe. Plus another heating service call. And I'm nearly 1000 miles away. Interesting times, to say the least,

Tuesday, January 7, 2014

Getting on the Ibrutinib trial.

After my appointment on the 16th I came home for Christmas. It was a nice thought, but could have backfired on me. As I mentioned before, I got a serious cold with fever and a touch of pneumonia. I called Houston and got a prescription. But when things didn’t get better in a couple days, I went to the ER and had them give me some breathing treatments and steroids and some serious cough syrup. I was miserable the whole time I was back in Illinois. They got me patched up enough to get back down to Houston and get signed up for this trial.

Here’s the weird thing. We were 2 hours outside of Houston when when the trial nurse called and said that the insurance hadn’t approved the Rituximab. As I said before this is a randomized trial comparing Ibrutinib alone with Ibrutinib and Rituximab combo. Rituxan is already approved for CLL/SLL so the insurance would have to cover that part of the trial. There was nothing we could do that day, so the next day we called several times. It was new years day and everyone was going to get off early, we weren’t even sure the person we needed to talk to was physically in the office. But we got a call at 1:00 that everything was approved and I needed to come and get the blood work and EKG so I could start on the 2nd.

So I hurried and caught the shuttle. Got the blood work. Got the EKG. Talked to the Dr. in charge of the test. Dr. Berger is a laid back German fellow. After this I’ll see Dr. Keating. But all went well and as it turns out, I was randomized to the non-rituxan arm of the trial. So the whole delay with the insurance was totally useless, but the couldn’t randomize me until I was approved for the whole trial, so there you go!

Any I started taking Ibrutinib on Thursday January 2 at 8:30 AM and I’ve been taking it every morning since at 6 AM. Minor digestive side effects on day 2 and 3. But now everything is cool. There are no side effects at all that I can feel, except (and maybe this is just because I want to) I feel better. I feel like I can take deeper breaths. There is no pain in my abdomen. The nodes in my neck have resolved again, but they were small. I have no idea what the big masses inside my chest and abdomen are doing, but I really do feel better.

Now if I can just make some money down here. A few prospects have popped up, but nothing has come through so far...

Monday, January 6, 2014

December Appointments

I see my last post was December 13. Quite a bit has happened since then and I haven’t had a chance to write at length. But I am going to correct that situation now. When I informed Houston of the size of the masses, they told me to stop taking the Revlimid and said they needed to see me immediately.
I flew down on Sunday December 15 thanks to Lifeline Pilots. They are an organization based in Peoria that organizes personal flights for cancer patients (and others). Pilots volunteer their time and their planes to fly people to medical appointments. They were wonderful. I was met on the ground by Houston Ground Angels which is a group of volunteers who provide ground transport to hotels for these flights. Then, thanks to the generosity of friends stayed at the Residence Inn near the medical center. I don’t think my friends want me to broadcast their names, but you know who you are and I am so thankful for this. It was on very short notice and I just wasn’t prepared for the extra expenses.
The first and most important test (after blood work) was the PET/CT scan. they did both at the same time, which saved quite a bit of time. When I talked to my Dr. about the results it was good news. I was fairly concerned that I might have had Richter’s transformation, since the size of the nodes had increased so much. but there were no hot spots on the PET scan. For all practical purposes, my cancer is invisible to the PET scan. So it has not transformed into a more aggressive form of lymphoma! That was news worth celebrating.
That still leaves these large nodes to deal with. I honestly have been suspecting things were getting worse for the last year or so. I have been out of breath and was sick so much last year, I just had to suspect something was going on. But as I told Dr. K at my last app. I am trusting in your judgement on when to do something. I am willing to stare it down as long as I need to. Fortunately, the timing was almost perfect. They had just opened up the Ibrutinib trial a day or two earlier.
I needed to wait for a few weeks due to the Revlimid. I had to have been off that trial for 3 weeks before I could start the new one. Which gave me time to fly home, again thanks to Lifeline Pilots, and try to put things in order for an extended stay in Houston.
I didn’t quite get everything done, but I made some serious headway. But I also caught a touch of pneumonia. Which almost put a damper on the whole thing. I was scared i wouldn’t get better in time to start the trial ASAP. So I kind of kept it under my hat. That explains the news blackout for the last few weeks. If I wrote, I knew I’d let it slip that I was sick again. Now that I’m better and on the trial, I don’t think it matters. I wasn’t running a fever when I started treatment and I haven’t coughed anything up for a while.

I have more to write, but I’ll have to catch up on that later. Thanks for keeping up with everything. I’ll cover Christmas in more detail later and also cover my adventures with insurance and lodging and how in the world am I going to be able to live with no money coming in in my next few blogs. Don’t miss it.

Friday, December 13, 2013


For those of you keeping up with my #Obamacare saga. - That saga was actually told through Facebook Posts. Maybe they will find there way on here as a background to this update. -  Here is the update: As I said when I first posted, I couldn't be the only person who was angry that the law prompted my insurance company to cancel my policy (at the first of the coming year) and offer a compliant policy for a mere 3600/year more. Well, thanks to thousands of others like me, congress amended the law to allow (but not require) insurers to extend those old policies another year.

So we waited to see if our insurer would renew our current policy (there is still going to be a rate hike) for the next year. As I've been saying all along, changes in health care could not have come at a worse time. I've felt myself getting sicker all year. Last winter I had 3 months of feeling like crap with only about 2 weeks of feeling good. That will wear a guy down. So I was determined to push the issue a little bit more with my oncologist whether or not I had CT scans.

You all know the results of the scans (significant growth), but we didn't know how much more we would be paying for our insurance. So the news is good. BCBSIL will renew our policy for another year. Which should save us a couple thousand dollars anyway. 2014 will be the watershed year, I hope, when I finally rid myself of this killer inside me. I will know more next week after my appointment in Houston.

Saturday, December 7, 2013

Nothing Quiet on the Western Front... Anymore.

Well, it’s been a relatively quiet several years. But things are changing.

It started last week. I was having some abdominal pain. I thought it was gas or maybe even just a little constipation. But after taking appropriate relief measures but getting no relief and the pain keeping me from sleeping I headed to the ER at about 2:30 AM Thursday morning.

Well, after I gave some blood, had an x-ray and an adventure with dilaudid, they ordered a CT scan, the results of which were disappointing. One of the lymph nodes in my abdomen has grown to about the size of my fist and is starting to cause some pain. I consulted with Houston and I am going to go down for a PET scan a week from Monday.

This is worrying because about 5% of CLL patients will have a complication called Richter’s Transformation where the CLL/SLL mutates into an aggressive lymphoma. That is obviously a very bad thing and with this popping up rather suddenly it is a distinct worry. But by the same token, I haven’t had a CT in a year and every check up has been a report of minimal growth which means growth, so it is not necessarily indicative of Richter’s. The PET scan will tell because, if you remember, my cancer was invisible to the last PET scan I had. So if it lights up the PET scan, that will tell the story. I have a bit of a wait to find out.

I’ll have more details of my plans as I get more information. Thanks for continuing to keep up in my cancer adventure.

Wednesday, November 13, 2013

I hate Being Sick.

Haven't posted in a while. So I thought I'd give a little update on how things are. I was home sick from the Music Shoppe today and cancelled my lessons. I went to the ER twice over the weekend: I started feeling sick Friday (but went to work and Illini game anyway), had trouble breathing on Saturday, but the ER doctor did nothing. No prescription not even a chest x-ray. So I went home took a couple more puffs on my inhaler and tried to sleep, but coughed all night. Slept late Sunday. Jana and the boys went to church I cancelled my Sunday lessons and we went to the ER again. Different doctor. this time I got an antibiotic, cough medicine and a CT of my sinus cavity. Monday felt horrible and stayed home. Today still felt bad but went to the my doctor for follow up. He was sympathetic and amazed that given my medical history the first ER doctor did so little. It's pretty standard to give immuno-compromised patients antibiotics as a prophylactic.

I mean, I can hear myself wheezing without a stethoscope. I can feel the rumble. I am bound and determined not to die from pneumonia before I get a shot at the next clinical trial. What I've learned is that it is very seldom the actual cancer that kills people now a-days: it's the concurrent infections or death from treatment.

While I didn't mention this or post it earlier, I did have an episode similar to this in October. Went to the ER and they pretty much took care of it there. I walked out instantly relieved with 2 breathing treatments, some steroids and a prophylactic antibiotic.

Well. That's most of what there is to tell. I had some tests done a chest CT and breathing function test. Chest CT showed what I knew. There has been continued minimal growth and since this was done here, they had to compare it to my last CT which was in early 2009. If you follow that link you will see that it was after I had had chemo and "consolidation" therapy. So while it wasn't the smallest they had been, it wasn't near what they had been before. I'd like to get a comparison to my first CT and see if I'm back where I was. Frankly the lung function test was disappointing too. My Vital capacity is measurably smaller, but my ability to move air is at 105% of predicted (thanks to brass playing, I'll betcha). But the bad news is the results are consistent with small airways dysfunction as would be seen in a chronic smoker or asthma. Well since I can count the number of times I've smoked in my entire life on my fingers, toes and possibly another set of fingers and toes, I'm pretty sure that doesn't count as chronic. Although I'm not sure how you count the multitude of smoky bars I've played, I'm not sure what to think. This may be at least partly independent of my cancer.  Still, I've lost .37 liters of vital capacity and that is at least partially the tumors and possibly how much I ate that morning, but I don't remember eating at all.

What does all this mean? I don't really know, except that decision time is getting a lot closer. If these new trials don't open up for me, then I am back to having the Stem Cell Transplant. And if that is what it has to be, then bring it on. I am crazy angry that this has screwed up what should be my most productive years. I was positioning myself to make them productive (at least I was trying to) and then all hell breaks loose with my health. Now I've spent the majority of the last seven years marking time. I did make my album, it's true. But I was unable to really monetize it. I did take it on the road But I was unable to do an extensive tour. I am graduating too many of my private students without having a class to replace them. This in spite of having had 3/4 of the top district jazz band trumpet section as students and about the same proportion of the Central H.S. Concert Jazz Band trumpet section and a decent proportion of the trombone section (although I've passed them on to a trombonist when they reach a certain level and they need to start knowing trombone specific things.) And my students do well in concert band as well. I can't take all the credit, of course, no teacher can. But those who practice the way I tell them to practice eventually start catching up to or passing their peers, even the students studying with other teachers (and this town has a lot of great trumpet teachers).

Well, that's a lot of what's been on my mind. I suppose I need to find a shrink to talk to, but when would I have time to do that? That's why I started this blog: so that I could publicly put myself out their for everyone
to ignore, rather than just my shrink. So, I don't have much positive inside me right now except the determination to beat cancer back as long as I can. I've been kicking its metaphorical ass for nearly 7 years, That's a touchdown and a successful extra point. Hopefully I'll go all the way. If I can do that three more times, only with a two point conversion each time, I'll win. No one is promised even seventy years. So If I can make it that far, I've done pretty well!

So there is my football strategy, metaphorically speaking.