08/30/08 – Third Round Complete

I am pleased to report that the Third Round of treatment went as planned.  My White count is down to 13,600 which is the lowest it has been since around 2000.  My hemoglobin is at 13.6 which is within the normal range for me.  It seems that the Rituxan and HDMP (high dose steroids) treatment seems to be getting the CLL under control, and also controlling the Autoimmune Hemolytic Anemia (AIHA). The problem is that my counts are bouncing around a little, and there was mention of a fourth round of treatment if the numbers didn't look good at my next appointment on September 23^rd. I am generally feeling pretty good, just having the normal reaction from the high dose steroids (tired and cranky). End of Short Report!

 

There always seems to be some sort of hitch associated with medical issues.  On August 12th I had my monthly appt with Dr. Kipps and he said I was on the right path, and my lymph nodes and spleen had both shrunk substantially, which is good.  On the down side, my white count at the beginning of the second round was at 23,000. Two weeks later when I had my appointment with Dr. Kipps it had gone up to 30,000 and my platelets were a little low.  He said he would have liked to have seen a more definite decrease after the second round, but he also said it could just be part of the cycle. For the first time he mentioned that we might want to consider a FOURTH round of treatment.  This was the first time we had heard of this, and so we were a little surprised.  He indicated that if we were almost there it would be better to have one more treatment to get rid of any residual cells in the bone marrow and try to have a more complete response.  Unfortunately it makes it difficult to plan much of anything when you don't know what is going on. He will not be able to determine if I need a fourth round until my Sept 23rd appointment with him.  At that time he will determine if I need another week of treatments which would start on Sept 29^th (which we have already scheduled, just in case).  So for now all of that is up in the air. 

 

While I was down there for the infusion the good doctor stopped by and chatted with me for a while going over the results of my blood test on Monday (the first day of treatment). He once again said he thought things were going well and we would just have to wait until after the 23^rd to make the decision about another round. If you ask me what my 'gut' feel is about a fourth round, I would say I will need it.  I am hoping not, but the fact that Dr. Kipps has already brought it up means that he is seriously considering it. So just when you think you may have a breather for a while, things change.

 
 

Once again we stayed down in La Jolla for the week.  We cooked in two nights, went out to La Jolla for dinner at a GREAT Italian restaurant recommended by my friend Kevin.  We also went out with Lisette and Angelo one night, so it was a nice relaxing getaway.  Speaking of getaways, we are going over to Catalina on Tuesday or Wed for 5 or 6 days (depending on how I feel).  We will be staying in a cabin in one of the coves with our friends John and Toni, and meeting Ro & Sue and Bruce and Connie who are coming over on the Orfila's new sail boat.   

 
 

I am generally feeling pretty good, a little tired and having some residual steroid after effects, but I now know that those will taper off and I will be back to my normal cheery self. 

 
 

All for now.

 
 

Terry   

 

08/02/08 – Round 2 has been completed!

Last Monday (July 28^th), we went down to La Jolla for my second round of Rituxan treatment. If you don't remember, the treatment is a weeklong and is given for 3 consecutive months. So far it looks like the treatment is doing what it is supposed to be doing. Before they start the treatment they run a battery of blood tests to make sure that your numbers are all going in the right direction. It turns out that my numbers are all looking good. It also appears that the after effects are less this time than after the last treatment. (End of the short report)

The more detailed report -- My white count is down to 23,000, which is the lowest it has been since 2003. (Normal is between 5 and 11,000, and mine has been as high as 787,000). My hemoglobin is at 12.9 which means that my AIHA (autoimmune hemolytic anemia) looks like it is under control. My platelets are over 300, which is another good sign. Other than sitting in chair for 6 -7 hours a day it was a pretty uneventful week. I had no real side effects, and the treatments went according to plan. Every day I got
Cimitedine (for upset stomachs, which is really Tagamet, except much stronger), and HDMP high dose steroid, Solumedrol. On days 1, 3 and 5 I got my dose of Rituxan (790mg). On day two I got the nebulizer infusion of Pentamidine, which is an antibiotic to protect me against pneumonia. On day 4 I got my monthly dose of IVIG (immunoglobulin). So as you can see, there wasn't much down time on any day.

This time we decided to just stay in La Jolla for the week (I know, a tough decision). Even though it is not a bad drive down and back, it is still about 1 ½ hours each way and when you have to be there at 8am, it means you have to get up pretty early to get down there. It turned out to be a very good decision because it was just so much more relaxing to not have to worry about the travel (also saved a lot on gas). We wound up staying in a condo, with a full kitchen, so we had two meals in, made all of our breakfasts and lunches, so that saved us some money as well. So when we got done each day around 3:30 we could just drive around La Jolla, or go back to the condo and relax. We also had some time to visit on different nights; dinner with Lisette and Angelo, dinner with Sue and Duane, who also spent the night, and dinner with Rick and Cindy, who were in Carlsbad for their annual stay. All of those visits made the time go much quicker.

I seem to be feeling a little better after this round of treatment. It took me about 3 days to start feeling a little normal last time, and even though I am not 100%, I think I notice a difference for the better after this treatment. So I am hoping the recovery time will be even quicker this time.

In two weeks I will have my monthly visit with Dr. Kipps and then two weeks after that I will have my last round of treatment. So far, this looks like it is having pretty positive results. Thanks to everyone for the text messages, emails, phone calls, visits, and prayers. They are all very helpful and uplifting.

Terry

07/16/08 – Dr. Visit & Status

Yesterday we went down to La Jolla for my monthly visit to Dr. Kipps to check on how I am doing. According to the good doctor I am doing fine. There are some issues that he can't explain, like why my red count was 12.5 when I started the treatment, then the next week it was 14.5, and then yesterday it was 12.9. I asked him if that was bad, that I seemed to be going back down again, and he said that he thought it was a combination of the 14.5 test being performed at another lab (not as good as his), and he even thought the test might have been wrong. He told us that the 12.9 number is where he actually expected me to be. I will do another blood test next week just to be safe. He did say that he thought that I was NOT hemolizing (killing off the red blood cells). He did say that my lymph glands and my spleen have both shrunk in size.

My white count, which no one seems to worry about, is at 52,900, and it was at 48,600 on the first day of the treatment. The higher count is not cause for alarm because the treatment causes the white cells to come out of hiding from the lymph glands and the spleen. Once in the blood stream the Rituxan attacks them and knocks them out. So there is some expectation that the WBC would be higher in the beginning, but then start to decrease.

Dr. Kipps was happy with the results so far, and is still confident that this treatment is working.

After the treatment I was out of commission for about 2 ½ days, which was expected by everyone but me. I have been slowly getting better, and right now feel about 95%. I even played golf and walked 18 holes, which is the first time I have walked since around last September.

My next adventure begins on July 28^th for my next 5 days of treatment. Assuming nothing major happens between now and then I won't have much to say until that happens.

Terry

 

 

07/04/08 – Happy 4th of July

I am so happy that this week is over. After 5 days of treatment, I am spent. I can say that the treatment went well and other than having a slight cough, gaining about 6 lbs, being a little irritable, suffering from slight heartburn, having no taste buds, having slight vision problems, and a little trouble sleeping, I am doing quite well. All of these side effects are temporary (or so I am told), and should disappear within a couple of days. I am still a little short on energy, but I am hoping that too shall return quickly.

The treatment went as expected and there were no complications or false starts. They were able to infuse the Rituxan at the full dose rate on days 3 and 4. This is probably because they gave me such a small dose on the first day, a larger dose the second day and the full doses on days 3 and 4. The Rituxan infusion probably took 3 ½ hours on those days; compared to the 11 ½ hours it took the first time I had it in October. Quite a difference.

On Thursday I did have an additional therapy added to help protect me from the possibility of infection. All of this treatment is not only treating the CLL and helping with the AIHA (anemia), but it also lowers my resistance to infection. To counter this, I am on 3 oral antibiotic prescription drugs, and on Thursday I had a nebulizer infusion of Pentamidine, which is a antibiotic that can be inhaled. On Friday I also got my bi-weekly dose of IVIG once again to help with infection and to help control the AIHA.

I will get a blood test next week just to make sure all the numbers are going in the right direction, but no one at La Jolla is very concerned about my numbers being out of whack. They seem EXTREMELY confident that this is going to have great results for me. I am praying that they are correct, but it is still hard not to worry about it.

It has been decided that I will now go on a monthly IVIG because they feel that the AIHA will now be under control. This means one less long day down in La Jolla every two weeks. My next visit to La Jolla is on July 15^th and will be just a blood test and a visit to Dr. Kipps. All indications are that this will be a short and sweet visit, and he will send me on my merry way. The next treatment will be the week of July 28^th- Aug 1^st, and should be the same treatment that I received this week. The last treatment will be August 25^th – Aug 29^th, and then I should be done with this go round.

All for now,

Terry

 

06/30/08 - Uneventful

Webster defines uneventful as 'marked by no noteworthy or untoward incidents', and this is what today was. (I know some of you may have to look up untoward, but that will increase your vocabulary knowledge.) My appointment was at 11, but with no traffic we got down there about 10 because we didn't know if I had to have labs drawn before I went into the Infusion center. Well, it turned out that they were going to draw labs when I got in the Infusion center, so that is what they did. But, because of that they couldn't start the infusion until after they got the results, so that took a while, until 1:30pm. At first this was pretty irritating, but then I remembered the last time I got Rituxan they were working off of a 10 day old lab test, and bottom line, I shouldn't have gotten Rituxan when I did. So we waited for the labs results and when they came back they were all good. Hemoglobin still holding at 12.5 and my white count is down to 45,000, which is the lowest it has been on this go round.

First they tried to find a good vein, and three pokes later I had one IV and two bandages on blown veins (par for the course). They started with Cimitedine (for upset stomachs, like Pepcid, except much stronger), Then I got my HDMP high dose steroid, Solumedrol, once again a very high dose. As close as we can determine, about 6 times stronger than my highest prednisone dose. So after two hours of all that, they could then start on the Rituxan. This was given at a rate of 30 ml / hour over 4 hours. After all of these drugs I had NO reaction at all to any of it. I did get some Benadryl IV and that did make me a little sleepy, but that was it. Remember that they start the Rituxan very slowly on the first day and only give a partial dose. Tomorrow I will get the remainder of the dose (770 ml). They will start it slowly and gradually increase the dose until I react or they reach the maximum infusion rate. They say they can infuse it at a rate of 400 ml per hour on some patients, but I don't really care how fast they infuse it as long as I don't have a reaction. On Wednesday and Thursday I will get the full dose (890 ml), and on all days (including Friday) I will get the Solumedrol. On Friday I will also get my bi-weekly IVIG, but no Rituxan.

They say I may be a little irritable and may have trouble sleeping, but I have drugs for the sleeping part. The irritability part everyone will have to live with. We decided to come home tonight because we don't have to be down there until 10am tomorrow. The next 3 days we have to be there earlier, so we are playing that by ear right now.

We talked quite a while to my case manager about the next two courses of this treatment and what happens after that, but I won't get into any of that right now.

All in all a good day. Thanks to everyone for their kind words and prayers. I know they are helping.

Terry

 

 

 

 

06/25/08 – Starting Treatment!

Today I got the call from the Infusion center and I am starting treatment on June 30^th. This treatment plan will take all week, so we will be down there all 5 days, including 4^th of July. As I previously posted, the treatment we agreed on was Rituxan + High Dose Methylprednisolone (HDMP). I get a low dose of Rituxan on the first day, then the remainder of the dose on the second day, then the full dose on the 3^rd and 5^th day. I get HDMP all five days. Somewhere in that week I am also supposed to get my bi-weekly IVIG, but I will let the nurses figure out when they can do that. How this treatment actually works is described in the previous post. This treatment is then given two more times at a 28 day cycle. So with no complications, I should be done the last week of August.

My blood test from this week is good, hemoglobin is holding steady at 12.4, and my white count is down to 95,000. So after a week completely off of steroids, I am hanging in there. This is good news because they want to make sure that they can start the treatment while I am still in a decent range. They don't think there will be a significant change by next week, so unless something crazy happens, it is all systems go.

Today, Donna and I listened to a program put on by the Leukemia and Lymphoma Society talking about CLL. Dr. Kipps was the only speaker for an hour and in the course of that program one of the treatment options he mentioned was the one that he recommended for me. So we feel pretty good about the plan that has been put in place for me.

I will report more as next week progresses.

Terry

06/21/08 – The time has come

First off I want to apologize for not getting this out sooner, but I had a good excuse. I was playing golf both Friday and Saturday. Saturday's golf was an annual tournament that is put on by my friend Dan Gooch, and it supports golf (for the past 36 years) in all the Long Beach Schools, all the way from the high schools to Long Beach State. The amazing thing is that we (my two boys and two of their friends) won the "A" flight. So it was a lot of fun.

So now back to the medical stuff. Last week there were two visits to La Jolla, one on Wednesday (for my IVIG) and one on Thursday (to see Dr. Kipps and figure out where I was and what the next steps were going to be). The good news is that as of last Thursday I was completely off of prednisone, and my hemoglobin was holding at 12.5. This is significant because the taper was so fast, and I still was able to hold my own. The results were good enough that Dr. Kipps decided that NOW is the time to start treatment.

So now the question is: what the treatment will actually be? Dr. Kipps thinks that I will have a very good response to a combination of Rituxan (described in more detail at a link on the right) and high dose methylprednisolone or HDMP. He would like this to be a 5 day regimen every month for 3 months. The thinking is that Rituxan and HDMP will not only treat the CLL, but also have an effect on the autoimmune hemolytic anemia (AIHA). The way this works is that the HDMP induces apoptosis (cell death) by a number of mechanisms while Rituxan sensitizes leukemia cells to apoptosis (die) by downmodulating expression of the anti-apoptosis protein bcl-2. Therefore, it is possible that Rituxan sensitizes CLL B cells to steroid induced apoptosis enhancing the effectiveness of HDMP in refractory CLL. Well, some of you may be interested. It is also scary that I sort of understand all of that.

The expected results are that my white count (currently at 107,000) will drop below 10,000, and that my bone marrow will show no signs of CLL. The big question is what will be the expected remission period? No one really knows that answer and the best guess is 6 months to 2 years. The next question is what happens then? This therapy can be used multiple times, but the effectiveness eventually wears off, and then another type of treatment has to be explored. Although I have read about many other types of treatment, those options haven't really been discussed with Dr. Kipps yet.

Even though I have had Rituxan before, and only had a reaction at the first infusion, there are still risks and potential side effects from this therapy. The biggest single concern is that of infection. This can take the form of fungal or viral, and there is a whole list of drugs that have to be taken before, during and after the treatment. The second issue is the rate of infusion that Rituxan is given. As was mentioned in my post in October, I had a serious reaction to my first infusion of Rituxan and it was all as a result of the infusion being done too fast (plus it took 11 ½ hours). At the Moore's Cancer Center (in La Jolla) they take the rate of infusion VERY seriously. In fact, the first day, they only give you a dose of 100mg (out of 750mg) to make sure you don't have any reactions. However, in most patients, the reactions lessen the more times you are treated with it.

The next question is when will this start? As of today, I still don't know. They are trying to schedule me for 5 straight days (Mon – Fri), but the problem right now is that the infusion center in La Jolla is booked up. The timing of this is a concern to me, because last time, 6 weeks after I went off of prednisone, I started showing signs of AIHA, which is why I had to go BACK on the prednisone, so there is only a small window of opportunity here. I am hopeful that I will hear something on Monday of next week and we will have a schedule, and for right now, it looks like the week of June 30^th, or July 7^th. Then it would be two more times on a 28 day cycle, which would mean I would get done sometime in the beginning of September.

Today I got the results of my bone density test. My regular doctor had requested the test because of the osteopenia that was found in my chest xray that was taken in January. The results of the test (which is more accurate than an x-ray), showed I didn't have osteopenia, but I had osteoporosis, which is worse. So now, I have that to deal with. Certainly the use of steroids has not helped the situation, and the fact that I will be getting high doses of steroids during my treatment, means that it will probably get worse unless they prescribe something like Fosamax to help keep my bones strong. In case you are wondering, this has nothing to do with my CLL; it is just another medical issue that I have to deal with. Did I fail to mention the kidney stone that sent me to the emergency room in March?

With all of this, there is a lot of uncertainty, and waiting around for things to happen. When I get a definite starting date for the therapy, I will update the blog once again.

Terry