05/15/10- Released for Good Behavior

After 5 days in La Jolla being poked, prodded and receiving treatments, we are finally back home. On day 3 I received the second drug in the trial called Bendamustine (Treanda) and the trial drug, called ABT-263 which is oral. There had been a lot of talk about this drug tasting horrible, but it is less than a teaspoon, they give it to you in a syringe that you squirt down your throat and then chase it with juice, or iced tea. It actually wasn't that bad, tasted something like burned peanut oil. Now how in the world would I know that? Ever seen me cook? They have to do blood tests every hour to check how your body is reacting to the drug, and they do this for 8 hours. The side effects were very mild, didn't sleep at night (but I think it was because of the steroids they gave me with the Bendamustine), little upset stomach the next day, but overall nothing I couldn't deal with. One of the major side effects of the trial drug is that it drops your platelets and raises your liver enzymes. It was quite a shock on Friday when I got the report. Platelets went from 222,000 on Thursday to 144,000 on Friday (normal range is 150-300). Even though it is a huge drop, it is not anything that could take me out of the trial. They have to go below about 25,000 to do that. I felt well enough to go out to dinner (Osteria Romantica in La Jolla, thanks Kevin) with Bruce and Connie who happened to be in the area yesterday.

This morning I had my blood draw after we checked out from the hotel, started driving home and got the call that my platelets had dropped down to 121,000, but that was still OK. So, I took the 3^rd and last dose on the way home. The original plan was for me to have a blood test on Sunday and Monday in La Jolla, but I convinced them that I could get them a reliable sample up here (am going to LB Memorial), and that way I don't have to drive down there for a 5 minute blood draw. Since I had my last dose, there is really nothing to be done now except to wait until my next round in June. If my platelets are at a worrisome level, then they will postpone, or stop, but I don't see that happening.

So the new plan is now to get my blood drawn up here Sunday and Monday, go back to La Jolla on Tuesday for my monthly IVIG, another blood test, a physical exam, an EKG and an echocardiogram. Then I have to get blood tests every Tuesday until June 8^th, when I begin the second round.

SHINGLES. I want to put in a little info on my bout with shingles. First off, I am not a medical professional and no one should do anything without talking to their health care professional. I had a diagnosed case of shingles (without the red rash and blistering, which is not common, but does occur). The pain is difficult to describe. It is kind of a burning / stabbing pain. In my case it went in about a 5 " band from my belly button on my right side to my spine. Shingles usually happens on just one side at a time. I think because I was on anti-virals already, it may be kept me from getting the rash. But what I was left with I would not wish on anyone. I have been in almost constant discomfort for 3 weeks. Nothing even touched it except Tylenol w/ codeine and that wasn't very much. Now that I am on the trial I can't take aspirin, Tylenol, any Nsaids (like Motrin), so I am left to just grin and bear it. Today is the first day that I have periods when I don't feel it. There is possible help for 'normal' people (those without compromised immune systems). There is a 'shingles vaccine' that you can get from your doctor. If you have a chance to get it, then by all means, do it. I couldn't have had it because it is a 'live' virus and I can't have any of those, but most other people can. So ask your doctor and take the vaccine. End of my non-medical advice.

I actually feel pretty good, a little tired, some mild GI issues, but I still have an appetite. Now with another 20 days to recover, I would expect that I will be just fine for the next round. The success of this treatment will depend on how my White count responds (downward), keeping my hemoglobin up, and keeping my platelets and liver enzymes at good levels. In order to get a decent response I will have to have at least 5 more rounds of treatment and maybe up to 7. So we take it one day at a time.

Terry

05/12/10 - Start of Treatment

On Tuesday I began my Clinical Trial. They take it slow for the first round to check your reactions to all 3 drugs. The first day I was there about 8 hours and had Rituxan which I have had over 20 times before with little or no reaction. I also got a drug to prevent pneumonia and this was given thru an inhaler. This time my reaction was a little different. I developed a slight fever before I left the infusion center, but nothing major. When we go back to our hotel I started feeling worse, with flu like symptoms, chills, and my fever went up to 100.5. I was concerned that I was going to get worse, but I knew this was a common reaction to Rituxan, but one that I had not experienced. I took 2 Tylenol and 2 hours later I felt fine.

This morning I had a full breakfast and went in for my next infusion, this time a drug called Bendamustine or Treanda. They drew my blood first and my WBC went from 53K too 28K in one day, which is pretty much expected from Rituxan. It was a quick infusion (45 min), but because of the trial they have to do a blood draw on a continuous schedule for the next 6 hours. We did have 2 hours between the last two tests, so we got to get out and go the mall. We even got to go out to dinner with Lisette and Angelo, which is always fun. So far I have had no real reations to this drug. I am hoping it will last.

Tomorrow I go for a second dose of Bendamustine and the first dose of the Clinical Trial drug. I am hoping the non reactions continue, but it will be a long day, 8 hours of blood draws. the next two days I only get the trial drug and am not sure how long they will keep me.

Thanks for all the emails, facebook posts and prayers. I definitely helps me get thru all of this.
Terry

05/05/10 – At the Starting Line

Using an analogy that 'the lights are yellow and we are waiting for the Christmas Tree to turn to green' (that's for you Jack). Does anyone else get this? I have passed all the medical and administrative hurdles and am scheduled to begin the treatment on Tuesday, May 11^th. It looks like I will be down there for 5 nights for the first month of treatment. They proceed very slowly to watch all of your blood levels and reactions for the first doses.

Other than the fact that I have been diagnosed with shingles, I am doing fine. I don't have any of the redness or blisters but just have the stabbing pain. After two visits to Prompt Care and two incorrect diagnoses, I finally got confirmation on Tuesday when I went to La Jolla. I apparently don't have any of the classic symptoms because I am on an anti-viral, and that probably stopped the outbreak. It was interesting to hear their comment at La Jolla ' oh yeah, we see that all the time' to the comments at Prompt Care 'hmm, never seen that before, must be a pulled muscle, it can't be shingles because you have no rash'. I did have to increase the dosage of the anti-viral to help get rid of it. I was afraid they were going to postpone my Trial again, but they said with no outbreak, I am good to go.

I have talked to a couple of people that have been on the Trial drug by itself and there are minimal side effects. A few GI problems and some fatigue, but that goes away in a couple of days. Since we are adding two additional drugs to the trial, I also have to be aware of any side effects from those as well. One of the two, Rituxan, I have already had many times, with no problems at all. The last drug, Bendamustine is given in a smaller dose than it would have been if I was just getting it alone, or in combination with another drug, so I expect there to be few problems with that as well.

The Trial will last 6-8 months depending on how I respond and if there are any drops in blood levels that would cause a concern. There is a woman at UCSD that is on this same protocol and after 4 cycles she is responding quite well. So we can hope for the same response from me.

I will keep everyone updated more frequently next week during the trial.

Terry