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

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