CAL-101: Day 36
Good news today. Dr. Flinn is very pleased with John's response to CAL-101 so far. The lymph node on the left side of John's neck that was concerning us was a little smaller today. But John pointed it out to the doctor and told him it had increased in size and had been tender. Dr. Flinn said that a certain amount of waxing and waning (of the nodes) is to be expected and he was not concerned about it. Overall, they have responded extremely well.
Another good thing at this point is that John's white count has not shot up dramatically. It has increased only slightly. A lot of patients have a big increase in their WBC with CAL-101. John has not. His numbers are:
WBC 9.2
AL 7.6
Neuts 1.4
RBC 4.19
HGB 13.2
HCT 39.5%
PLT 173
I was a little concerned about John's neutrophils. They were 2.1 last week and dropped below the low-normal range this week. I know that is because of the chemo and his neutrophils may never fully recover from the toxicity. But I didn't think they would stay this low. (His neutrophils prior to treatment were consistently in the mid-normal range.) I asked Dr. Flinn about the 1.4 number and was relieved when he said he wasn't worried about that number at all.
After next week's office visit, John will go from weekly visits to bi-weekly visits for a while. And the longer he is on the drug, the further apart his regular appointments will be. He will go every other week for a while, then once a month, then every two months.
I asked Dr. Flinn today if John could stay on this drug as long as it keeps working and he said "Yes." He explained that when the initial trial began, there was not even a plan in place for patients who successfully completed the first twelve cycles. So the first patient to be extended had to receive a compassionate need approval from the FDA. But now there is a plan in place for extending treatment. John will not be taken off the drug as long as it's working.
I told Dr. Flinn that I knew several other CLL patients who were having great results with CAL-101 and that I hadn't encountered anyone who was not. He said, "It's not a perfect drug. There are patients who have stopped responding after about six months. But we're having a lot of success in CLL and Lymphoma patients."
Of course, I would rather hear that he didn't have a single patient who hadn't responded. However, there are no guarantees in life and certainly no guarantees when it comes to treating CLL! John and I both thought Dr. Flinn seemed very upbeat and encouraged at this visit. (We've had quite a few visits that were not so uplifting.)
I actually went today thinking that maybe Dr. Flinn would increase John's dosage - because of the one enlarged node - since John is receiving a low dose. I am so happy that it was no big deal. I have become extremly lymph node sensitive over the past three years. Sometimes it feels like life hangs on whether I can see lymph nodes. When they pop out, I get scared. When they go away, I'm euphoric. It's weird how important lymph nodes have become when I spent the majority of my life never giving a thought to lymph nodes.
Like I've said so many times, this is a real rollercoaster ride.
But today I am not clutching the bar. I am enjoying the sunshine and the breeze ... figuratively AND literally!
Today is really a beautiful day. I think I forgot how great eighty-five degree weather felt!
Thank you, my dear friends, for your love and prayers. No matter where I am on the rollercoaster, I never feel alone. That in itself is something to be very thankful for.
Another good thing at this point is that John's white count has not shot up dramatically. It has increased only slightly. A lot of patients have a big increase in their WBC with CAL-101. John has not. His numbers are:
WBC 9.2
AL 7.6
Neuts 1.4
RBC 4.19
HGB 13.2
HCT 39.5%
PLT 173
I was a little concerned about John's neutrophils. They were 2.1 last week and dropped below the low-normal range this week. I know that is because of the chemo and his neutrophils may never fully recover from the toxicity. But I didn't think they would stay this low. (His neutrophils prior to treatment were consistently in the mid-normal range.) I asked Dr. Flinn about the 1.4 number and was relieved when he said he wasn't worried about that number at all.
After next week's office visit, John will go from weekly visits to bi-weekly visits for a while. And the longer he is on the drug, the further apart his regular appointments will be. He will go every other week for a while, then once a month, then every two months.
I asked Dr. Flinn today if John could stay on this drug as long as it keeps working and he said "Yes." He explained that when the initial trial began, there was not even a plan in place for patients who successfully completed the first twelve cycles. So the first patient to be extended had to receive a compassionate need approval from the FDA. But now there is a plan in place for extending treatment. John will not be taken off the drug as long as it's working.
I told Dr. Flinn that I knew several other CLL patients who were having great results with CAL-101 and that I hadn't encountered anyone who was not. He said, "It's not a perfect drug. There are patients who have stopped responding after about six months. But we're having a lot of success in CLL and Lymphoma patients."
Of course, I would rather hear that he didn't have a single patient who hadn't responded. However, there are no guarantees in life and certainly no guarantees when it comes to treating CLL! John and I both thought Dr. Flinn seemed very upbeat and encouraged at this visit. (We've had quite a few visits that were not so uplifting.)
I actually went today thinking that maybe Dr. Flinn would increase John's dosage - because of the one enlarged node - since John is receiving a low dose. I am so happy that it was no big deal. I have become extremly lymph node sensitive over the past three years. Sometimes it feels like life hangs on whether I can see lymph nodes. When they pop out, I get scared. When they go away, I'm euphoric. It's weird how important lymph nodes have become when I spent the majority of my life never giving a thought to lymph nodes.
Like I've said so many times, this is a real rollercoaster ride.
But today I am not clutching the bar. I am enjoying the sunshine and the breeze ... figuratively AND literally!
Today is really a beautiful day. I think I forgot how great eighty-five degree weather felt!
Thank you, my dear friends, for your love and prayers. No matter where I am on the rollercoaster, I never feel alone. That in itself is something to be very thankful for.
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