04/08/10 – The NEW Plan

If you remember from my last post, I was waiting to find out what is going to happen next. Well, I found out, and here is the new plan. They are still concerned about the 'shadow' on my lung. If I wasn't going into the clinical trial they might have ignored it, but because they have very strict entry requirements they want to make sure that I don't have anything else wrong that could skew the results of the trial.

So next Wednesday I go down to La Jolla for the 'consult' about the procedure. Then the next week on the 19^th I go down for the actual procedure. Now why in the world I can't do both on the same day is beyond me, but that is the plan. I guess because of the type of procedure they need to give you time to 'back out' if you want to. I told them I don't want to 'back out', but it didn't matter. So then we wait until all the experts figure out what is going on. Right now it could be one of about 5 things. A previous scarring from some past illness, a precursor to pneumonia (the one that Donna had, but I didn't get), a nodule of leukemic cells, a fungal infection, or something more serious. Right now they are 95% sure it is one of the first 4. If it is something simple I may begin the treatment in May, but if it is something else, then it may take a while to clear up.

What is hardest about this whole thing is the waiting and the uncertainty of it all. I already have enough of that going on and now this on top of it. I was very excited to begin this trial (and still am if it is to happen).

Terry

04/03/10- Poked, Prodded, Viewed, and now Waiting

April 1st, (no fooling), I went down to UCSD to get my Clinical Trial evaluation done. It was no big deal other than the 8 hours of being there (with 5 hours of that just waiting around. Hopefully I checked out OK because this is the last step before I am accepted for the trial. I had blood drawn (14 vials), a physical exam, an EKG, and echocardiogram, and a CT scan. All of this they pass on to the trial folks (at Abbott), who give their thumbs up or down (kind of like the Roman Gladiators). I didn't expect to get any answers so soon, but Dr. Kipps called at 4:30 on Friday and told me that they saw a 'shadow' on my lung in the CT scan. Right now they don't know what it is. It could be a pocket of leukemic cells (good), or a fungal infection, or something else. On Monday he will get the team of radiologists, pulmonary guys together and try to see what is going on. The possibilities are a lung biopsy, or a bronchoscopy, or a PET scan to get more definition. In any case, it looks like I will be going back to La Jolla next week to figure this out. It also means that I probably won't be able to start the Clinical Trial on April 13^th, unless they can clear up this thing up quickly. They have to get this out of the way before I begin treatment because they don't want to be treating two things at the same time.

Also yesterday we found out that Donna has 'walking pneumonia' and was put on antibiotics yesterday. Of course last night I started feeling bad, so I started my Z-pak to try to ward off anything that might come my way.

It is always something…

Terry

03/24/10 – The Human Guinea Pig

It has been a while since I have posted but after my visit yesterday I finally have something to write about. Since I finished my treatment in November my platelets and hemoglobin have remained stable, my white count however, is slowly increasing. What this means is that the AIHA is under control but the CLL is starting to raise up its head again. After my visit with Dr. Kipps yesterday he indicated that a couple of my lymph nodes have gotten slightly bigger, but my spleen has remained down in size. None of this is cause for immediate concern, but does point to the fact that we probably should consider doing something. He would like to see me in good physical shape whenever I begin treatment. Considering how fast this can move it is probably a good decision to start looking at something now. After a lot of analysis (does that surprise anyone?) we have decided to start treatment this time with a Clinical Trial. We started the initial consultation yesterday and will probably get more definite dates by the end of this week. The treatment will require 8 days down in La Jolla the first month and then 3 days a month for the next 5-7 months. End of Short Report.

There were actually 5 different options that we discussed and for a variety of reasons the ABT-263 Trial seemed like the best one for me. A lot has to do with where your counts are, what your past issues have been (AIHA for me) and what your genetic markers are. The clinical trial that I am looking at is one that combines ABT-263 (the test drug) with Bendamustine and Rituxan. Dr. Kipps just came back from a conference of CLL gurus where he gave a presentation on the effectiveness of this drug in the trials they have done so far. Back in July I posted information about the ABT-263 trial in a single agent mode. This new trial uses ABT-263 with a combination of known CLL fighting drugs. The following paragraph details how this drug is supposed to work.

Bcl-2 Family Protein Antagonists (ABT-263) Apoptosis, also known as programmed cell death, is a natural process by which damaged or unwanted cells, including those that are or could become cancerous, die and are cleared from the body. The Bcl-2 family proteins, which are expressed at high levels in many tumors, play a central role in regulating apoptosis and, consequently, in tumor formation, tumor growth and resistance to treatment. ABT-263 restores programmed cell death by blocking the function of pro-survival Bcl-2 family proteins. Pre-clinical data have shown that Abbott's Bcl-2 family protein antagonists effectively kill certain cancer cell types.

I have to go down to La Jolla once before the trial begins to go thru all the screening process (blood tests, cat scan, EKG, echocardiogram, etc) If I pass all of that, then on to the Trial. Based on firsthand knowledge from friends that have undergone clinical trial treatments, they often come with side effects (think the Pepto Bismol commercial), unwanted changes in blood counts, and sometimes just don't work. Based on the trials that have been done with ABT-263 alone the side effects have been mild but there are several things that must be monitored such as liver enzymes and platelet count. As with any clinical trial they want you monitored closely and that is why I will be down there for 8 straight days the first month. After those 8 days I go down weekly to be checked to make sure I am not having any major problems. The next 2 months I go down for 3 days of drugs and then back weekly to be checked. For the next 3-5 months I will go down monthly for 3 days. They are not sure how many cycles that I will be receiving because it all depends on how well you are responding and if there are any side effects. On the plus side the drug company (Abbott) will reimburse me for lodging and travel expenses for the times I have to go down there. I just got my confirmation today and will go to my screening on April 1st, and assuming I pass, will begin my treatment on April 13th.

I am not really happy about doing this trial; I wish I didn't have to do it at all. But I guess it is better than the alternative. I am happy that we are starting to make a definite plan for treatment because I was getting tired of this 'waiting game'. On the plus side, I am feeling really great. Have taken a couple of trips in the last several months and am playing golf on a regular basis. As usual, I rely on Faith, Family and Friends to make this journey easier for me.

All the best,

Terry

01/26/10 – Where do we go from here?

After my last treatment in November, we had to wait two months before they could do a bone marrow biopsy to evaluate the marrow. On January 13^th I had my 4th bone marrow biopsy with no major complications. The reason for this is to determine how much involvement of the leukemic cells are in the bone marrow and to determine the 'condition' of the marrow. This is the real test to measure how well the treatments worked. Before I had any real treatment in August 2009, my involvement was 80%, which as you can imagine, is not very good. After treatment this time I am at 30%. So, as we expected, the CLL cells still exist in the marrow.

What we do now is based on many factors, not just the results of a bone marrow biopsy. As a result of the bone marrow testing, Dr. Kipps feels like we got further than we did last year with this treatment, but we still did not get a Complete Response (CR). Dr. Kipps performed a physical exam and with the exception of one pesky node above my clavicle (which has always been there) all my nodes have remained the same size since my last visit (small or non-existent). My spleen is still small and my overall blood counts remain stable. The most important ones are the White (WBC), which is now at 13.4, my Hemoglobin, which is at 15.5, and my platelets, which are at 211. All of those counts are within NORMAL ranges. Based on the fact that it has only been about 2 ½ months since the end of my last treatment, and there are no signs of my disease progressing at a rapid rate, he once again wants to wait two months and see where we are. He said I still may be getting some residual benefits from the last rounds of treatment and there is no hurry right now to do anything. Sounds like the Army, Hurry up and Wait! He indicated he does want to start treatment while I am still stable, but that wouldn't probably start until April or May. We did discuss four different options for treatment. One is a tried and true treatment called Campath, which works well to clean out the marrow, but doesn't work so well if you have bulky lymph nodes (remember the pesky clavicle node). So unless that node goes down, this one may be out. Campath is also extremely immunosuppressive, which means your immune system gets hit very hard you have to be concerned about infections. He then gave me literature about two clinical trials that they are currently running at UCSD. One is the same one that I was looking at last year and the other adds two more drugs (A Combo) to that one. He also talked to me about a new clinical trial that they are trying to get approved to begin sometime in the spring. Based on my EXTREMELY quick review of the options I am already leaning towards the Combo treatment plan.

So I will continue my monthly IVIG infusions and then wait until March to figure out the exact plan.

I can honestly say that I am feeling no ill effects from either the CLL or from the last round of treatment. I continue to do the things I want (and need) to do. I play golf regularly (am now walking 18 holes), am in the process of finishing a sprucing up of our family room (painting & molding) and redoing a bath.

Your continuing prayers and thoughts are working wonders for my health and my spirit. Thanks

Terry

12/06/09 – Hurry Up and Wait

I haven't posted in a month or so because it was just more of the same. In my last post I indicated that I was going to have Round 4 of the Rituxan and HDMP because Dr. Kipps felt like I was still showing signs of progress. So in mid November I had another 3 days of treatment. It went much like the previous three treatments and I think I may have even recovered quicker than before. We had scheduled a follow-up with Dr. Kipps in December, but after conferring with my case manager we decided there really wasn't any point in seeing him if I didn't have any major changes or issues. He couldn't really tell anything without doing a bone marrow biopsy, which has to be done two months after the last treatment. So we have the biopsy scheduled for Jan 13^th and the follow-up with Dr. Kipps on Jan 26^th.

Yesterday I had my monthly IVIG infusion, which takes about 3 hours. I also got my first blood test since my 3 day treatment in mid November. The numbers are looking very good. My white count has dropped to 7.6, which is not only the lowest it has been in over 10 years but also in NORMAL range. My hemoglobin remains stable at 14.9 so it appears that the anemia is under control as well. The big question is how long it will stay at those levels.

At my January appointment with Dr. Kipps, we will decide what follow-up treatment I should get. The options are many, so it will be interesting to see what he thinks will work the best. But once again I am on the 'wonder what to do when' roller coaster. It is hard to not be able to plan more than a month or two at a time. It was fortunate that the timing of the treatments has allowed me to travel to Seattle, attend my mother-in-law's 90^th birthday party (actually 2 parties, sorry Bette), go to Las Vegas, and go to Palm Desert.

I also received some of the edited pictures from the Rituxan photo shoot. It is amazing what they can do with Photoshop (They didn't have to touch up Donna!).

11/03/09 – A Dr. Visit and Next Steps

Well, today was a much anticipated day. I was going to see Dr. Kipps, evaluate where I am, and figure out what the next steps of treatment would be. I should have guessed what the results would be. The good news is that my white count continue to drop (13,000, but still not in normal range), my red count is stable (AIHA seems to be under control), my spleen has all but disappeared (really good news), but my lymph nodes are still there is some places. The good doctor feels like we are still seeing positive results and I am tolerating the treatment well so he wants to do ROUND 4. If I were unchanged from last visit (nodes, spleen, counts) he would have probably not recommended a fourth round. But because I am still responding, we will try one more round. Last year I only had 3 rounds and he said we got a triple (World Series / Baseball analogy) and this time he wants a home run. I had already scheduled this just in case for next week, so next Monday we will be heading down there for another 3 day adventure. The good news is that no matter what, this will be the last round of this type of treatment. The bad news is that there will be some kind of treatment after that, but that will be decided later.

I will see Dr. Kipps in 6 weeks or so to figure out what to do next. I know a bone marrow biopsy is out there somewhere, so I have that to look forward to. We discussed a number of different options regarding what my next treatment will be and I would guess that I would start something else after the first of the year. A new drug, similar to Rituxan, was just approved for CLL by the FDA last week, so that may be an option. We also discussed some clinical trial options that are being done or considered at UCSD. So I am once again playing the waiting game.

I am feeling good right now after some kind of bug two weeks ago. So to take advantage of this break, we are leaving for Seattle tonight for 4 days to see all my Seattle relatives.

Terry

10/01/09 – Back from the Big Apple

We are back from the Big Apple after an amazing trip. As you may remember we went there for a photo shoot for one of the drugs that I am taking. They might use the pictures in a brochure or in a medical magazine, so chances are not many regular folk will see it. But the whole process for the photo shoot was pretty neat. Donna and I were there for about 5 hours, then another couple came, and the next day another woman was used. All of the people involved (15 of them at the photo shoot) were just great to work with and from what they told us, we were also easy to work with. The people from the advertising agency really made the whole process very easy. (Thanks Tracey). We did go out to dinner with some people from the agency, the photographer, and 3 additional people that were used in the shoot.

They wound up taking pictures of me in 6 different settings wearing 4 different outfits. They also used Donna in 2 of the settings. The photo shoot took place at an estate in New Jersey alongside a river about an hour from Manhattan. It was a huge house that had a boat dock and two more guest houses across the road where the horse stables were. It was worth it just to see the house.

After we were done with the photo shoot we became tourists and did a lot of the standard things. We took two bus tours (uptown and downtown), we took the Circle boat tour around Manhattan, we walked about 10 miles, had slices of pizza, had a hot dog in Central Park, had some fantastic meals, took the subway, took some cab rides, went to the top of the Empire State building, sat in Times Square (which has now become a pedestrian mall), and went to Greenwich Village and Soho. We also met up with Sarah's friend Nicole and went to dinner at a Thai place she recommended and then went and saw South Pacific at the Lincoln Center. That was a really fun evening.

New York is such a high energy city that you wind up going on sensory overload. We spent about the right amount of time there for a first visit, but there is so much we didn't see, we know we will be going back.

Even after just finishing treatment the previous Friday I felt great and didn't have any side effects during the trip. I got my blood work back from a lab test this week and my White is down to 57,000 and my hemoglobin is up to 14.2, so I am moving in the right direction. I go back down to La Jolla on October 13^th for hopefully my last round of treatments for a while. Oh, and happy birthday to my sister and my Dad.

Terry