10/31/10 – “It’s a Hard Knock Life”

Some of you may know or remember the words from the musical ANNIE. Even though I'm not an orphan in NYC in the 30's, sometimes I can relate to the words in the song It's a Hard Knock Life. I went down to La Jolla last Monday for my 6 month CT Scan. This was to determine the status of my remaining nodes located in my abdomen. If they were gone, or had not shrunk since the last CT I would stop treatment. If the nodes had shrunk and all my other numbers looked good, I would continue the treatment. On Tuesday morning I saw the doctor and the word was that the nodes had shrunk about 25%, all my blood numbers were good, so I continued on with Round 7. Because there is no scheduled CT scan, I will also do Round 8 in November.

I guess this is good news bad news. The bad news is that I have to continue with the treatments, the good news is that I am still responding to the treatment and having no major side effects or issues. Of course I had hoped to be done, but I would rather receive the full benefit from the treatment than stop early. This round was a little longer than usual because I had a CT on Monday, 10 hour treatment on Tuesday, 2 hours treatment on Wednesday, and then I had to stick around on Thursday because I had an EKG and Echocardiogram on Thursday afternoon. I think it was the longest time that we had spent down for the Trial. We did get to get out and see a couple of movies and go to a couple of nice dinners (tried Roppongi, Kevin), so it made the time go by a little quicker.

There is no clear decision on how long this treatment will last. In the beginning I thought I could have no more than 8 rounds, but in re-reading the information packet I see where it can continue until the doctor decides I should stop. I will have to talk to Dr. Kipps in November and try to figure out what he thinks my path will be. I have given up on picking a stopping date, as I have been wrong (and a bit disappointed) in the past. I feel pretty good after this round of treatment, so that is a plus. We are off to Seattle on Friday to visit family, so I am taking advantage of how I feel to take a small trip.

On November 13^th it will mark 3 years since I saw Dr. Kipps for the first time (he welcomed me by putting me in the hospital). In the past 3 years I have certainly been on a roller coaster of medical ups and downs and a variety of treatments. I know that I am going in the right direction and in the words of that famous philosopher Annie,

The sun'll come out
Tomorrow
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're always
A day
A way!

 

Tomorrow,

Terry

10/1/10 – Round 6 Over

This week I finished my 6^th round of treatment. As has been the case for the last couple of treatments it was pretty uneventful. We knew going in that I would do Round 6 unless some of my blood numbers had gone whacko in the last month (which they did not). There was an interesting change in the protocol which made the treatment even easier. In the past, I had to be there on the 3^rd day of the treatment to just have a blood test and take the oral trial drug (which means we had to spend an extra night down there for a blood test). They have now changed the protocol and now I can go home after the 2^nd day of treatment and just take the oral drug at home on the 3^rd day. So this makes it a shorter stay and even easier.

This month is going to be one of anxious waiting. On Oct 25^th I go down for a CT scan to determine if my internal lymph nodes (the only issue left) have shrunk to an acceptable size. On Tuesday the 26^th I see the Dr., get the results of my CT scan and determine whether or not I get Round 7. I know I have said this before (and regretted it), but it doesn't look like I will have Round 7. When I met with Dr. Kipps this week he indicated that with all of my other positive results (blood work and external nodes shrinking), he thinks that the CT scan will also show the results that we want. So I expect we will go down there on Monday, get the CT scan, go to the Dr. appointment on Tuesday morning and then go home.

I probably feel better after this round of treatment than any of the other rounds. I am having very few side effects so I am either getting used to it, or there is nothing left to treat so it is just running through me.

A question that I have been asked 'is what is next'? The real purpose of this trial is to determine how long of a remission can I get from this particular protocol. Even though all of my blood numbers look good, and my nodes may have melted away, the real test is a bone marrow biopsy which can't be performed until 2 months after my last treatment. So if this is my last round then I will have a bone marrow biopsy in November or December. That will tell the depth of the remission. No one in the trial (there are now 12 of us in the U.S.) has had this yet, so we don't know what to expect. So even though I may be done with the Trial, I am still in waiting mode (as usual).

Today is my sister's birthday, so I want to say Happy Birthday to her!. And since I won't probably write another update by Sunday, Happy Birthday to my Dad too!

Terry