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

09/19/09 – Round 2 Completed & Off to NYC

On Friday I completed Round 2 of my treatment (Rituxan + High Dose Methylprednisolone). There were a couple of positive things that happened this time as compared to last month. First of all we were only down there for 3 days instead of 4. Secondly, we stayed down there for the two nights, which made the whole process a lot less stressful. Thirdly, my White count has dropped by more than 50% since last month, and my Red count is slowly getting better, so that is all pointing in the right direction. And lastly, the side effects seem to be less than last time, and I think my recovery time will be much quicker. The last one is important because we are leaving for New York on Tuesday and I was hoping to feel well enough to travel by then. End of Short Report.

Going into these treatments there is always a concern that it is not going to work and even though it is too early to tell how well this round of treatment will work, it looks like we are moving in the right direction. The most important thing of course is to get the Autoimmune Hemolytic Anemia under control, and it appears that is happening. Along with the AIHA getting under control, it is also having an effect on the CLL, by dropping the white count, which was rising quite rapidly. I think that the fact that I seem to feeling better after this treatment is a good sign. As usual I have lost my sense of taste and I feel a little swollen (from the IV's), but that will probably subside in a couple of days. I felt pretty good all day today, but started feeling a little tired and run down late this afternoon, so maybe the steroids are wearing off. If the treatment follows last year's schedule, I recover quicker after each treatment, so I hope that is the case this time as well.

After a lot of questions, contract issues (yes, contracts), and travel arrangements, we are going to New York for a photo shoot. As you might remember I mentioned the possibility in my last post that we might be going to NYC to participate in a photo shoot for one of the drugs I am taking. I had previously participated in a focus group for that drug and they are apparently putting together a marketing campaign for it and may want to use me, and perhaps Donna. We are not sure if the pictures will be used in ads, brochures or what, but the contracts covered just about everything. They might not even use the pictures, but at least we get a trip to The Big Apple out of it. We are leaving Tuesday and they are paying for 3 nights and we are adding two additional days to do some more sightseeing. I haven't been to NY in over 40 years and Donna has been there two times since we have been married. So at least there is something positive coming out of this mess.

Terry

09/02/09 – Looking Good so Far

This Tuesday I had my appointment with Dr. Kipps and also an IVIG infusion. I would say that it was a good visit. My lymph nodes are shrinking, and some have disappeared. My liver, which was slightly enlarged, is back to normal size, and my spleen, which was measured at 8 is now down to 2. (I won't go into what the measurement means, but just know it is a good thing). My white count is decreasing and my hemoglobin has gone up. All of these things mean that the treatment is working. We discussed how many treatments I would probably need and the number still is three, but we would leave it open until after the last round. I am scheduled for my second round in mid September. Although my white count is still high, Dr. Kipps was very happy with my progress so far and thinks the next treatments will go even better. He did talk about using some kind of clean up therapy after I get done to try to completely wipe it out to put me into a longer remission. (End of Short Report, but you will miss something if you don't read on!)

As I mentioned in my last post I felt pretty lousy for a couple of days after my last treatment. Last year when I had this treatment I seemed to recover faster each time I had the treatment, so I am hoping this will be true this time as well. But in less than a week I was back to pretty much normal, so I guess it is a small price to pay. Since the next round of treatments will be only 3 days we will probably stay down there for two nights and not drive home each day. It is a long drive after an 8 hour infusion. Because the high dose steroids compromise your immune system I am on a bunch of prophylactic antibiotics, antifungals, etc. The one thing I don't need is to come down with something during this treatment.

About 2 months ago I was asked to go to a focus group to review some magazine ads for the main drug I am taking, Rituxan. The just wanted our opinions about the wording, layout, etc. I didn't think much about it until late last week when I got an email from someone that was representing the advertising agency that is putting together the ad campaign for Rituxan. They wanted to know if I would consider being photographed for their ad campaign. I said sure, why not, what else do I have to do? Well, they called me back this week and they are sending me a contract and setting up the photo shoot. The only bad thing is that it is going to be in New York City. I know, life is tough. Since they seemed so interested in me, I decided to push my luck and ask about the possibility of my wife being able to join me. They got back to me and not only will they pay for her to fly out, but they may also want to use HER in the photo shoot as well. I asked Dr. Kipps about traveling and he said no problem, but he would like to give me an extra round of IV immunoglobulins during my next treatment just as a precaution. This is all happening pretty quickly and if it all works out, they want us there September 23^rd for a couple of days. Since we are going to be there anyway, we will probably stay a couple of days extra to play in the Big Apple. I am a realist and know that this may not pan out, or they may even get me there and decide I'm not what they are looking for, but that's OK.

Terry

08/26/09 – Update on Round 1

Well, I have decided to give a short update on how Round 1 went and what happened afterwards. The treatment itself was 4 days last week (Tuesday – Friday). It was just about what I experienced last time, 6-8 hours in a chair, losing my taste buds after the first day, but generally not feeling too bad. I had a 7:30am one morning, so we just decided to stay down there the night before to make it easier to get there. It turned out to be a pretty wise decision. We stayed at a Residence Inn and they wound up having a free barbeque dinner and a free breakfast, and since we used points for the room in the first place, it was a cheap stay.

The problems began once I came home. I knew I was not going to feel 100%, and expected that, but I guess I forgot how POORLY I actually felt. Felt pretty lousy Saturday and Sunday, then Monday I thought I might be turning the corner, but still felt poorly. Then Tuesday I felt much better most of the day, and Wednesday (today), I feel mostly normal. In looking back at the recovery time after the last treatment, it wound up getting shorter and shorter each treatment. So I am hoping that the next treatment will go a little better. I am thinking that because my White count was higher this time (50,000 to 155,000) there may have been more leukemic cells to get rid of and therefore I felt worse.

I have an appointment with Dr. Kipps next week, so I can discuss some of these things then. If past treatments are a guide, my WBC actually goes up initially after the first treatment, but then by the time the second round happens it has gone down.

All for now

Terry

08/17/09 – Finally Beginning

After my bone marrow biopsy on Friday 8/7 I thought I would be starting my treatment of Rituxan + HDMP treatment for AIHA plus a rising WBC the next week. I finally talked to my case manager on Wednesday and she said they got insurance company approval and they were still trying to 'work me in', but it was tough getting me in on such a short notice (especially for 4 days in a row of 4-8 hours/ day). So, not hearing anything I called back on Friday and found out I had MISSED my Thursday appointment. Apparently they had made the appointments (thru Sunday) and no one called me.

Lessons learned here:

Call back multiple times / day EVERY day
Talk to a LIVE person
Call BOTH the Case Manager AND the Infusion Center

So of course they had to RESCHEDULE me. I am now starting on Tuesday thru Friday. My first R + HDMP treatment was 5 days, but they have cut it down now to 4 days the first treatment and 3 days for the second and third months depending on when I am at. We will drive down and back tomorrow, and then spend the night on Wednesday because I have a 7:30 infusion on Thursday.

My WBC has now gone to 177,000 from 122,000 a week ago so it is on a fast climb upward, but my Hg is holding steady at 12.3, which is the bigger concern right now. So let's hope that all the drugs they pump into me will get back on the right track.

Terry

08/07/09 – And Away We Go!

After my last post I indicated I was going down to La Jolla for a bone marrow biopsy and another blood test to confirm my status. Well, it didn't happen on Wednesday, it happened today, Friday. For those of you who have never had a bone marrow biopsy, it is an interesting experience. In simple terms it is like someone putting a corkscrew in your hip and then taking a horse syringe and drawing out bone marrow. Gross enough for everyone? On the blood test side, my hemoglobin has gone up to 12.3 from 11.7, my WBC has remained the same. So what this means is that we will NOT start Prednisone to carry me over until treatment begins. Speaking of treatment, it looks like as soon as all the administrative insurance issues are resolved, I will begin treatment next week. We decided to once again try the Rituxan + HDMP since I had a 14 month response to that treatment. If you forget what that is all about, there is a link on the right hand side of the web page that explains it in more detail. It will be 3 or 4 weekly cycles given 4 weeks apart. We also decided to follow that treatment up with another drug to try to get an even longer remission. All of that will be decided at the end of the R + HDMP treatment. End of short report.

Actually I feel better than I did earlier in the week mainly because I won't be on prednisone, I now have a plan, and I even have a post plan. The bone marrow biopsy is not a big deal for me. I know some people who have one and swear they will never have another. I have had 3 and they have all been pretty uneventful. This time was slightly different because Dr. Kipps himself had to do the biopsy because his PA was on vacation. She had done my last two with no problems. I kidded him that I hoped he remembered how to do one, but it came off without a hitch. Even though Donna is a nurse, they requested that she remain outside during the procedure because the in the last 4 procedures the relative watching had passed out. Dr. Kipps decided he wanted to discuss things with me in the room, so he brought her in where she stayed. She was fine but did say it is easier being the patient and not being able to see the procedure than having to watch. I won't get the results of the biopsy for a couple of weeks, and it will be used to check for any genetic changes and to use as a baseline before treatment.

I was happy that my hemoglobin counts came back on a slight upward swing. If they had not, he would have started me on prednisone to keep my counts in check until the treatment started. Dr. Kipps is reluctant to use prednisone unless he absolutely has to. The long term negative effects are just too great. (I know this first hand because of my steroid induced cataracts). However, because The Coombs test was positive, we know that my AIHA is back and we have to treat it. Because I had such a positive response to the Rituxan + HDMP before, we decided that this was the best option for me this time as well. After this course of treatment (which will be over 3 or 4 months), we will decide if we want to add on another treatment protocol to try to get a longer remission. We talked about several options, but nothing has been decided yet as to which one. If you remember the last time I was treated in June – August of last year, the treatment is 5 days in a row, so we have to decide if you are going to stay down there or make the drive every day. The treatment itself has not been a big deal for me, although it can take 6-8 hours a day depending on what drugs they are giving me that day. I do lose my taste buds after day 2, and I feel kind of lethargic for 2-3 days after the last day of treatment. Other than that, it is not a problem for me. I am not sure which day of the week I will start, and they will call me on Monday to let me know. I will probably begin treatment on Wednesday because of insurance authorization issues, which means the first round, will end on Sunday.

Because of the bone marrow biopsy I was on limited duty for 24 hours, so Jeff had to work on installing the patio pavers mostly by himself. Unfortunately I will be cleared for duty tomorrow, so I will get to help out. I hope we get it done this weekend, because I will be out of commission next weekend. I know that with my family, friends and faith, I will get through this and be on the upswing once again.

Terry

 

08/04/09 – Another Bump in the Road

Today I had my 6 week visit with Dr. Kipps and an IVIG infusion. It wound up being a long day for more than one reason. We fully expected to go down there and get more information on the Clinical Trial ABT-263 and make a decision on when I might start that treatment. This was at least the desired plan, and then we got my blood results. My White Count has risen almost 50,000 to 122,000, and more importantly my hemoglobin has dropped from 15.1 to 11.7. This is a sign that my AIHA (autoimmune hemolytic anemia) has raised its ugly head again. To confirm this, they also ran another test (A Coombs test), and this turned out to be positive, confirming the AIHA in its early stages. So now the plan is to treat the AIHA, starting with a bone marrow biopsy tomorrow (they don't mess around), and starting me once again on the lovely drug Prednisone. As soon as the AIHA gets under control in 6-8 weeks, we will once again look at beginning treatment (of some sort). End of short report.

This really caught us off guard. I have been feeling great with no indication that the Anemia was returning. I have been playing a lot of golf, tearing out part of our backyard to lay 100 sq feet of pavers, and generally feeling normal. We really expected this trip to be a discussion of the Clinical Trial, when it might start for me, and what tests I would have to have before the trial began. During my physical exam, Dr. Kipps did find that my spleen was slightly enlarged (not good), but my lymph nodes were a mixed bag of slightly larger, the same or in some cases slightly smaller. He indicated that we may wait a little longer to do ANYTHING, including the clinical trial. Of course this was his opinion without seeing my blood results. Apparently the blood testing machine broke down and my blood results were not available during the exam. So we were feeling pretty good, and marched off the Infusion Center for my monthly IVIG infusion. About half way thru we asked my nurse if she could check and see if my blood test results were available yet, she checked and brought them to us. I honestly thought she had brought the wrong person's results. I double checked to make sure my name was on the paper. Unfortunately it was. To say that we were shocked is an understatement. We expected a slight increase in the WBC, but never even thought that the hemoglobin would be low.

I immediately put a call in for Dr. Kipps nurse and left a voicemail saying, 'Did you see my blood results'? We finished up the infusion and marched back to the clinic to get some reading of what was going on, and what the plan should NOW be. We caught up with his nurse and she had not seen the results, so when I told what they were, she said 'I will go talk to Dr. Kipps'. Donna then said to me, 'they are going to want to jump on this right away'. Dr. Kipps nurse came back out in a couple of minutes and said, 'you are coming in tomorrow for a bone marrow biopsy, and we will more than likely start you on prednisone tomorrow'. Just great. Here I thought we were going down the clinical trial / treatment road, and now there is a detour in the road and we are going back to the AIHA treatment road. I have been on that road before and I really didn't plan on going on it again. All of this is not completely unexpected. Those of us with CLL who get AIHA (about 11%) wind up having it recur more often than not. Unless you can get rid of the CLL (which really means put it in a remission state for some period of time), chances are AIHA will return.

Even though the clinical trial ABT-263 is off the table for now, it is not gone forever. There is a high probability that I will be eligible for the trial when I whip this AIHA issue. That may actually be a good thing. The trial officially opens August 10^th, so they may have results for a 6-8 week time period when I begin. Dr. Kipps and I discussed the trial and the Phase I results and how well I might respond to it. He was very positive about the results so far and did think I would be a good candidate. I like it because it will not close the doors on other treatment options if this one doesn't work for me.

So needless to say I am not too upbeat right now. Although I know the immediate AIHA problem can be resolved (as it has been in the past) it was certainly not where I expected this to be going. It just reaffirms that CLL does not have a 'standard' course of escalation or a standard course of treatment.

Terry