Road Trip to Tampa and the Florida Keys

Kenyon and James

One of many Spanish Mackerel boated this  morning with Cap'n Bill Whitney

 

 

 

 

 

Hello to everyone from Duck Key, Florida.    www.hawkscay.com   How did I get here?  Well, I was sitting at the car dealership on Thursday, waiting for my truck to get serviced, and I called Renee and said, "you know, one of these weekends I should get in the truck with Kenyon and head down to Florida, drop Kenyon off in Tampa so he can see James (his bff that moved last summer from Raleigh), and then head down to the Keys and poke around, then come back and pick up Kenyon and head home."  Renee thought that was a great idea  (togetherness is a great thing, but we have been together A LOT in the past month!!!).  Not only that, but she deftly pointed out that this weekend presented an opportunity that might not come around again until spring break, because Kenyon was off for several days due to exam week.  Well, Kenyon was wild about the idea and within 18 hours(!!!), we were on the road.  It's the perfect trip - Kenyon gets to pal around with James, I get to see the Keys and catch a few fish, and Renee gets a few days of peace and quiet.  I think Renee may have been the happiest  :-).

Call me crazy, but we left at 5 am Friday, and I arrived at this resort, Hawk's Cay, at 10 pm, with over 1000 new miles on the odometer.  I've always liked road trips!! 

There is medical news as well and it's very good.  I had "labs" Thursday in Raleigh and my white cell count has dropped into the normal range - 8300.  That's amazing given that 10 days earlier it was 95,000.  Praise God from whom all blessings flow!!  I think I said before that we won't know if I'm in remission until mid to late April, but this first treatment has absolutely obliterated my cancer cells, so a great first round.  The side effects have dissipated to being barely noticeable.....I'm still not up to 100% of my workout capacity but I feel really good and normal almost all the time now.

The chemo does some collateral damage, so while my total white count is in the normal range, I still have a disproportionate number of lymphocytes (the ones that are being produced in cancerous numbers), but now I have a dearth of "neutrophylls" - specialized white cells that fight infections.  So the docs put me on some prophylactic antivirals and  antibiotics to keep infections away.  Hopefully those numbers will be up next week.  So right now, I feel great and the news is good.  It's still early in this journey, but Renee and I have already learned (and many of you have too) that around every corner is some new news or development and it can be something that lifts you up or takes you down - this is why it's so important to focus on the thing that never changes - God's love and care for us - as Jesus said, "I am with you always, even to the very end of the age".  These great truths of scripture are the anchor of our lives, whether the news is good or not.

I fished with Cap'n Billy Whitney today and he was outstanding and good company as well - if you're ever down here I highly recommend him - here's a link to his website.....

http://experience.hawkscay.com/fishing/socettuum-charters

I hope you are well and encouraged.  Thanks as always for your prayers and support.   

Meet my docs, take 2

Dr. Keating:

Http://faculty.mdanderson.org/Michael_Keating/default.asp

Dr. Kritz:

Http://www.cancercentersofnc.com/physicians/Kritz.HTML

Wednesday, January 18

Greetings everyone, it's a fine winter day in Raleigh, should be near 60 degrees later. The side effects of my treatments have subsided to noise level; I feel normal most of the time and have resumed my workout routine at about 90% of my pre-treatment level. I still have afternoon and evening 'crashes', a sudden loss of energy and mild headache which I treat by taking one couch for an hour or two.

Last night I felt well and energetic enough to cook up a stir fry with beef, peppers, onions, mushrooms, and broccoli...soy, vinegar, garlic, ginger, lots of black pepper. Just ate the leftovers..... :-)

Today is not a workout day so I took 2 of our 3 dogs out for a 50 minute walk - they behaved themselves well and everyone enjoyed it.

I've always got 2 or 3 books in process (reading, not writing), and one worth mentioning is "Bonhoeffer - Pastor, Martyr, Prophet, Spy"......Dietrich Bonhoeffer was a German pastor who took God at His word and stood in opposition to Hitler when the vast majority of the German church leadership had fallen in line in support of the Nazi regime. A shout-out to my sister Jill for giving it to me for my 49th back in November. Bonhoeffer wrote one of the most famous books in the Christian faith, "The Cost of Discipleship", which I plan to read again after finishing this great biography. Bonhoeffer began his active opposition to Hitler and the corrupted Reich Church in 1933 when he was 25 years old. He was executed in 1945 before he turned 40. Hugely inspiring book and provides great perspective.

I'll post something by saturday to let you know how my visit with my local oncologist, Dr. Kritz, goes on Friday.

Meet Dr. Keating:


Meet Dr. Kritz:

Back Home Again

Greetings friends, it's Saturday afternoon and I'm back in Raleigh, very glad to be home.  Since my last post, I was visited by the notorious side effects of chemotherapy, fatigue and nausea - they started after my last treatment Thursday - yesterday I couldn't bring myself to look at a computer screen, and of course the travel home was a chore.  I'm feeling a little better now, and we're all hopeful that the worst of the treatment side effects are over.  It hasn't been very bad, just a nagging queasiness and the attendant difficulty in finding anything appetizing to eat. 

We had another good meeting with Dr. Keating on Friday - he greeted me with a "hey how come you look so good, I thought we would have beaten you up a lot more!"....and of course a couple of hugs...he says that I'm responding well to the treatments, my white count was down to 23,000 after the Wednesday treatment and my nurse Alice opined that she thinks my whites will be 'normal' by next week.  While it's a good start and exactly what they wanted to see, it's too early to draw any conclusions about remission; that will not become apparent until I return to Houston in April and they have a look into my blood cell factory, the stem cells in the marrow.

I will see my local doc (Dr. Kritz) later this week and we'll count cells again.  More soon.....

Thanks again everyone for your support, prayers, and well wishes.


 

Wednesday's Events

A good Thursday morning to everyone. I had a good night's sleep, all things considered. The cliff's notes on yesterday are that Renee and I got an orientation at the stem cell transplant center, and we had a very good meeting with Alice, Dr. Keating's nurse, where I learned that my white cell count dropped from 95,000 to 39,000 overnight after my rituximab treatment Monday!! Alice says I'm doing great and the reaction of my cancer to the rituximab was excellent. Finally I had my 3rd day of treatment which I tolerated very well. Cause for rejoicing!

Regarding the stem cell transplant orientation, my status as a 17p CLL patient means that all things equal, 17p patients do not do as well with standard treatments, have more difficulty establishing stable remissions, and remissions that are achieved are, on average, shorter than non-17p patients (17p refers to a chromosome abnormality that has been established to correlate with these disease features - about 10% of CLL patients are 17p). For this reason, 17p patients are routinely accelerated into the stem cell transplant preparation process - the prep process is mainly to obtain approval from the insurance carrier to cover the procedure which costs between $300 and $500K. The insurance companies put you through a lot of paces before they approve. Whether and when I have a transplant will depend on how my FCR treatment goes, whether I get into a stable and durable remission, and if or when I relapse, what other second-line treatments are available, etc. The transplant people (my doctor in transplant is Dr. Chitra Hosing) say that their normal procedure is to transplant 17p patients as soon as they achieve a stable remission, i.e., the first remission. Dr. Keating at this point doesn't plan to recommend transplant on first remission and Alice, Dr. Keating's head nurse, made a funny comment yesterday when I asked her about the differing opinions, to the effect "they're transplant people - they think everyone needs a transplant". I found that hilarious - the MD Anderson equivalent of "when you are walking around with a hammer, everything looks like a nail".

Back to Dr. Hosing - the key facts and numbers on transplants are that they give you a week of chemo to suppress your native immune system (stem cells), transplant the donor cells, wait a week or two for them to start producing new blood cells and rebuild your blood - while fighting side effects like infections and graft vs host disease, or GVHD (this is when your new immune system attacks things it's not supposed to attack).....after 3 to 4 weeks in the transplant unit, if all goes well you go into a local (here at MD Anderson) outpatient care facility for another 2 to 3 months, so typically it's 3 to 4 months at MD Anderson. It can take a year to two years for the new immune system to fully stabilize and work properly - ie it's a long road (as my friends Bill and Barb Maton know first hand). According to Dr. Hosing - here's the payoff - there is about a 50% CURE rate. I was surprised that she used the word cure - but that's what she says - the disease is eliminated and it doesn't come back. Some patients do well for a long time but can relapse and there are additional options after tham including re-transplants and other new drugs that are being tested now....the reason they don't just transplant everyone right away is that there is a 10-15% mortality rate in the first year - so high risk, high reward. That's more than enough info on transplants for now since we don't know if or when that will be in my treatment plan.

Moving to our next meeting with Alice Lynn, my nurse in the leukemia department, I had been through two treatments, the rituximab on monday and the other two drugs tuesday - Alice said I looked good, I told her I felt great, and she said my white count on tuesday had measured 39,000, down from the 95,000 measured before treatment. I did a double take - that's lower than it was when I was diagnosed 9 months ago, and it was measured less than 24 hours after the rituximab treatment. Alice said that was great, the drug was having the desired effect on my cancer cells. My lymph nodes were also noticeably smaller. AMAZING. It still feels so early in this treatment process, I don't want to get ahead of things, but clearly the initial reaction was very positive, and also my side effects so far have been minimal.

My treatment yesterday was scheduled for 7 pm but I popped in there after lunch to see if they could work me in earlier - I did end up getting in at 3 pm and out by 5:30 so Renee and I could go out for a nice dinner last night at a nearby restaurant. I'll try to do that again today. I plan to go to the gym after I get this post up and see how I feel on the stairmaster. The main events left here are my treatment today and a final meeting with Dr. Keating tomorrow morning. Renee and I are ready to get back to wintry Raleigh.

As always, thanks for your concern, prayers, emails, and wonderful support.

Houston Day 2

Yesterday was another good one - my only appointment prior to my evening chemotherapy session was "labs" which I can whenever it's convenient for me. After updating my blog in the early morning, I spent a couple of hours working out the kinks in my iPad email client. I have a couple of great friends at Apple who each had the great and very generous idea to give me an iPad to help me pass the time in treatment, so Renee and I have "his 'n hers" iPads....they are the perfect companion in this situation, because there is a lot of waiting to be seen or treated. So keeping up with blogs and email, reading books online, playing games or doing puzzles, even reviewing my appointment schedule online....all in your hand in a perfect-size package. We are very jazzed and grateful for them. Sorry, let me get to the point.... :-)

Chemo started at about 6:30pm, as I showed up early hoping to squeeze in a little before 7. It was much quicker than Monday, 3 pre-meds for a half hour, fludarabine for 15 minutes, and the "C" drug for about 40 mins. We ate during the treatment and other than feeling a little sleepy from one of the pre-meds, it was uneventful. We were out of there by 8:30. I celebrated with ice cream. The best description for how I felt after the treatment was "jet-lagged", which for me means just a little woozy, nothing really uncomfortable. We'll do it all again tonight, and the last treatment is thursday. Busy morning today as we will visit the stem cell transplant department for a consultation and orientation. This is just to make use of the time here and get us started on donor typing in case that procedure is needed in the future. MD Anderson is on the forefront of a technology called a mini-allogenic stem cell transplant which is much less toxic, dangerous and much more effective than traditional bone-marrow transplants. More on that later.

Thanks to all of you who have signed up to follow the blog and/or emailed Renee and I, it is really GREAT to hear from you....

Renee and I walked about a mile to a local restaurant for lunch yesterday, and cut through the Texas Children's Hospital Complex. It was an effective reminder of how fortunate I have been to be so healthy for 49 years. I have always been a "glass half full" person. This is a monumental opportunity to apply that principle. Walking around these treatments centers, it is much harder to look upon faces that are despondent and hopeless, than it is to look upon bodies that are frail and failing. I think it was a Veggie Tales videotape my kids used. To watch that had a song that said 'a thankful heart is a happy heart'. Wisdom for the day. I hope you have a great one. I plan to :-). Dan

Day 1 in Houston

Good morning everyone.........coming up on 8 am in Houston, I'm in the comfy lobby lounge room at the Rotary House International, the hotel owned by MD Anderson and connected to the clinic by skybridges - it's very convenient for patients and their families - but let me get right to the medical stuff, and save my color commentary for those of you who are more avid readers.

If you read my Friday post you know that when I saw my local oncologist he measured my white cell count at 75,000, down from 86,000.....well the first thing that happened yesterday was that I had "labs" (blood counts) done and my white cell count was 94,500.  The nurses and docs here had little to say about all that, except that they had confidence in their numbers, not the local numbers - I suppose their certainty can be forgiven since they are the #1 cancer clinic in the US  :-).  I could write a sermon about that issue, but suffice it to say it was the only bad news we got yesterday.

Dr Keating was his usual jovial, upbeat, warm and fuzzy self - the key points he made were - 17p patients, of which I am one, come in two major groups - those with mutated chromosomes (let's call them mutants) :-) and those with unmutated ones.  He said that I am a mutant, and that's good (there is a t-shirt in there somewhere)  - mutants do much better with the FCR treatment than non-mutants.  The statistics are that out of all 17p patients, the treatment achieves complete remission (CR) in 35% - but the mutants achieve 70%, and the achieved remissions are longer and more stable.  A word about statistics - sometimes they are nice to know, and sometimes they are discouraging.  Sometimes my outcome on any variable is consistent with the weight of the probability, and sometimes my outcome is the unlikely one.  This is why "God is in control" is the most logical and comforting thought process in all these situations.  It is very unlikely that any person gets CLL, but I did.  It's very unlikely (less than 10% chance) that a CLL patient has the chromosome 17p abnormality - but here I am....so we had some good statistical news yesterday but God is and remains in control and my outcomes do not rest in and are not determined by statistics.  So Keating said this treatment is the right one, this is the right time, and my chances of getting into a long (2-5 years) remission are good.

Second, Dr Keating told us about a new class of drugs that are T-cell inhibotors of some sort that have been unexpectedly and extremely effective in treating relapsed 17p patients (patients who have been treated with chemo in the past).  They are even working well on patients who have relapsed after stem cell transplants.  They are crawling their way through the FDA approval process, but there may be trials in the next couple of years or even approvals that might figure into my treatment down the road.  So that's good.

Last bit of news is that I started my treatments in the afternoon and it all went very, very well.  I was treated only with Rituximab, which is a monoclonal antibody - in the first treatment, it is administered slowly through an IV because it tends to cause more reactions than the other two drugs in the protocol (I'm big fan of the TV series "24"  I just LOVE to use the word "protocol"  :-) - if reactions occur, they stop the drip until you stabilize and then start it again.  If the patient reacts it can take up to 10 hours to get it all into the body.  I sailed through, no reaction, done and dusted in 4 hours.  We were back in the hotel room in time to watch the 2nd half of the Auburn / Oregon game (congrats War Eagles fans - Frank, Tim!!).  So that is a big PRAISE.  

So that's the first day in a nutshell - not so good news on my white count (but no big deal), good news that I am a mutant, and excellent tolerance to Rituximab.  Renee is here with me of course and I am so lucky and so blessed to have her here.  All thanks and praise be to God our heavenly Father who works in all things for the good of those who love Him.

Today I start the other two drugs, Fludarabine and cyclophosphamide.  Should be a 2.5 hour process, starting at 7 pm....(great time for a dinner reservation but lousy time for Chemo treatments - nothing I can do about it).  As always, thanks for your prayers - please post questions and comments - love to all - Dan (The Mutant) and Renee (the Mutee).  :-)
 

Getting Ready

It's Sunday afternoon and Renee and I are packing up for our trip to Houston and MD Anderson's cancer hospital.  This is really just a 'test post' as I familiarize myself with this blog tool and how it works.  I am scheduled to meet with Dr. Keating tomorrow morning around 9:30, but I have to be in the blood lab at 6:45 for a blood draw.  I had a really unexpected and wonderful bit of news on Friday - I went to see my local oncologist, Dr. Allan Kritz, because he wanted to "get his hands on my lymph nodes" before I went to Houston - they did a routine blood draw and my white cell count had dropped - that's right, dropped - for the first time since I was diagnosed - from 86,000 to 75,000.  That's what we call a praise!  It doesn't changes the basic facts around my disease, but it does mean that it's not advancing as rapidly as I thought it was after the last draw (Nov. 16).  Ok that's it for now, we will be arriving in Houston at 10 pm tonight and staying at the Jesse Jones Rotary House International which is owned by and attached to the hospital.  More soon - thanks to everyone for your words of encouragement and prayers.