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

 

06/03/08 – Update & Other Musings

Today I had my bi-monthly infusion of IVIG in La Jolla. At the same time they do the standard blood tests, and check to see how I am doing. My hemoglobin has dropped just a little from 12.9 to 12.3. This is what they call an insignificant drop, and my Case Manager told me, "I was doing good". I am doing so well they want to taper me off of the Prednisone completely by June 19^th. They want to do this mainly because that is when my next appointment is with Dr. Kipps. If I continue to hold my own, and get completely off steroids by the 19^th, then the plan will be to start therapy the next week.

The Therapy - We still haven't determined what that therapy will be, but my guess is that it will be a course of monoclonal antibodies. This is not chemotherapy, but is a drug that attacks a specific cell marker. One choice would be Rituxan (generic name rituximab) and high (pulse) doses of steroids. Back in October, I had this therapy, but I only had it one day a week for 3 weeks. When it is used this time it will be done over a 3 month period; the first month will be 4 consecutive days, the second and third months of 3 consecutive days. So there will be a total of 13 days of treatment spread out over 3 months. So you can see that this is a much more intense therapy than I got the first time. The number of consecutive days may require we stay in La Jolla during these treatments. The treatments are given at a VERY slow rate. If you remember, the first time I had Rituxan, it took 11 hours. Who knows if this will take that long or not. They say they you adapt to some of the treatments over time, and are able to tolerate them better (less side effects and faster infusion rates). The other therapy option that was discussed was the use of another monoclonal antibody called HUMAX CD20. At the time we discussed it in February, it was still in clinical trials and Dr. Kipps thought he could get me into a trial. Since that time, I have read that the trial is over and now they are compiling the data. I don't know if the good doctor could or would want to get me into this trial. It is similar in nature to Rituxan, but it does its job differently. I am sure we will discuss this on the 19^th.

Cancer Funding - I know this next topic may incite riots and make some people crazy, but I have to bring it up. I am not making a political statement, but just stating the facts. The Federal Government funds much of the research for cancer related programs. Over the last 30 years, the annual amount has gone up and down, with different administrations and different economies. In 2007 the National Cancer Institute's budget was $4.75 Billion. This week I read an article in Newsweek that stated the war in Iraq has cost us over $340 Billion. Now of course, there will be those of you that say that the war was necessary, and I may not totally disagree with that, but man, that is a lot of money (not to mention the lives lost), and only time will tell if we have done any real good. The article went on to state that the $340 Billion is more than the TOTAL amount of funding for cancer research in the last 30 years. Over 1.5 million people will be diagnosed with cancer this year in the United States. In the U.S. this year, an estimated 560,000 people will die from cancer. The National Health Institute estimated that overall cost of cancer was $219 Billion in 2007. (that is EVERY year folks, and going up all the time). I am sure that there are many other government programs that receive money for questionable reasons, but we are talking about a LOT of people here. It seems to me that we may have our priorities screwed up. And don't get me started about Universal Health Care or the FDA.

05/22/08 - Creeping along!

Just a quick update on how I am doing. On Monday (5/19) I went down to La Jolla for my bi-weekly infusion of IVIG. I have had a couple of blood tests since my last update. On May 7^th I had a test and I was at 11.0, then on May 12^th, I was at 11.7, and then Monday (11/19) I am at 11.6. So it seems that the Prednisone is helping to keep me on the upswing. After the rise to 11.7 the doctor, took me down from 80 mg / day to 60 mg / day. After the test Monday, they decided to lower my dose to 40 mg / day and see what happens next.

If my hemoglobin continues to rise, they will lower the dose once again. If it stays the same or starts going down, we are not sure what will happen then (probably increase the Prednisone). Keep in mind the NORMAL hemoglobin range in males is either 12 or 13 depending on who you talk to. So right now, I am still on the low side. I am feeling surprising well, even with that low level, but I think the Prednisone is keeping me up a little.

Overall, my numbers are still much better than back in November, so that is a good thing. My white count continues to rise (not so good), so the good doctor thinks that I should begin treatment for the CLL as soon as I can get off of the steroids. The hope is that I can be off of steroids in about 6 weeks if all the numbers keep pointing in the right direction. There is also thinking that the CLL might actually induce AIHA, so if you can get the CLL more under control, it also controls the AIHA. There are several options for treatment, so we will have to make a decision about that in the next month or so. I see Dr. Kipps on June 3^rd, and we will discuss those options in more detail then.

It is a little funny that every single small thing makes me wonder what is going on. When my heart races a little, I start to cough, or I get a little weak, all make me pause. All of those things make me wonder, 'is it the Prednisone, is it the AIHA coming back, is it the CLL raising its ugly head, am I coming down with something?' So it seems like I am always anxious, which I know is not a good thing, but it is always in the back of my mind. Then I will go a day or two with no symptoms, and I forget that anything is wrong.

A side note. There is a lot happening with the Evans Clan this week. Sarah, our youngest daughter graduates from her Interior Design program, our son Matt applied for Newport Beach Fire (keep your hoses crossed). Jeff is leaving for Spain on Saturday. Our daughter Aimee is flying over to Spain and meeting Jeff (and his friends Jared and Tim) in Spain next week. My Dad and his wife leave on a 3 week European Adventure on Wednesday, on the 29^th, they (my Dad, Lois and Jeff and Aimee) will all be in Barcelona, so there will be some sort of meeting over there of part of the Evans clan. Then the next week my sister and her partner Cherese fly to Paris for a week, then on to London where they will meet my Dad and Lois for a week there. Almost too much to keep up with.

Another, side note. Yesterday was my 3 year retirement anniversary. I can't believe it has been that long. A lot has sure happened in that time. As much as I enjoyed my job and the people at the City, I have no regrets about retiring, and have enjoyed the traveling, the golf, the going out to dinner in the middle of the week, 2 & 3 day mid-week trips to here and there, home improvement projects, and time with the family. In the back of my mind, I knew that the CLL would become an issue, and I am glad that I had the opportunity to retire somewhat early and start doing all the things that you want to do when you retire.

05/06/08 - Somethin’ is a workin’

Today we went down to La Jolla for my bi-weekly IVIG infusion, and for the blood test that tells me how I am doing. And the envelope please….my hemoglobin is going UP. I went from 9.3 on Thursday to 11.0 today. So the consensus is that the Prednisone is working. The other theories are that the IVIG also helps and the shot of Aranesp that I got two weeks ago is kicking in. So, even though we really can’t be sure which of the pieces are making a difference, a difference has been made.

So, now the short and sweet readers can stop reading.

The plan is now to have a blood test on Monday to validate the continued rise in the hemoglobin. If it continues to rise, I will probably start tapering off the Prednisone next week. My rough guess is that will take until the end of June. If you remember, this is exactly what happened to me at the beginning of the year. The difference this time is that when I get to a good hemoglobin level, and I have tapered off of the Prednisone, Dr. Kipps will start a Treatment Therapy for the CLL. There is some belief that the AIHA can be triggered by the CLL, so the theory is that if you can control the CLL you can control the AIHA. But in order to treat the CLL your AIHA must be under control. So there may be a small window of opportunity in which to do this. I won’t get into the treatment protocols at this time because even the ‘detail’ readers may glaze over.

So, now that I am back on the mend, we are off to Vegas Baby. We are going with Donna’s parents to visit Donna’s sister Nancy and her son and daughter. We actually just talked about doing this last night if I was on the upswing. But this is how you can operate if you are retired.

05/01/08 - and the Roller Coaster Continues

Today we went down to La Jolla for my blood test and type and cross match. So I just donated 5 tubes of blood, got in the car and drove home. On the way home we stopped in Solana Beach and ate at Milton's Deli. Milton's is the company that makes the good whole grain breads. But I digress. After we got back on the road, I got a call from my case manager. She informed me that my hemoglobin had dropped, (from 9.6 to 9.3), but it was not enough to warrant giving me a transfusion. In conferring with Dr. Kipps, they seem to think that the prednisone is kicking in and the AIHA is beginning to stabilize. So, for right now, I am not in need of any additional treatment. I don't have to go back down on Friday for a transfusion, or next week for a Rituxan treatment. I will stay on the current dose of prednisone until my counts start rising, and then they will start tapering me off again. I will also go down to La Jolla next week for a bi-monthly infusion of IVIG therapy (which will also help control the AIHA).

They do want me to get another shot of Aranesp, which is the protein which induces the production of red blood cells. We are trying to get this scheduled for up here at my alternate doctor on Friday. Otherwise, I will have to drive back down to La Jolla and get the shot tomorrow or Saturday.

I still feel fine, and played 27 holes of golf yeserday, so I am not letting any of this keep me down.

Terry