Last week was pretty busy. Luckily, my fatigue seems to be easing off, so I have been able to do more of what I need to get done. I had labs taken and a dose of a light chemo drug called Velcade on Tuesday at Waldo, and then a friend and I drove out to Dartmouth and I had a PET scan and discussed the results with Dr. Meehan.
It was not any surprise that I am back in relapse. I had a little bump on the side of my neck last week that I recognized as a lymph node growth, so the DLI and the Velcade have not been able to overwhelm my lymphoma. The PET scan showed that I have many dozen highly infected nodes throughout my neck, chest, lungs, extending down into my lower intestines.
The good news, as far as it goes, is that the nodes are small. My prognosis has not changed, we are sure that we can keep this in a state where, while not in remission, will not spread very quickly. My worst-case scenario is still several years.
However, I am on my way tomorrow to be enrolled in a study with a promising new drug called Ibrutinib. It has been pretty effective on blood cancers in the Phase 3 studies. It is not a chemo drug, but instead has a little fake glucose "hook" that the lymphoma love and suck up quickly. The other side of the drug has a marker which tells one's B-cells and T-cells that the lymphoma is a foreign body and should be destroyed. As an added bonus, the drug is a pill, which beats getting stuck with a needle every day.
If it goes well, I should be starting the drug on Friday. My oncologist is pleased to have me be able to get this drug because while the other therapy will mostly control my lymphoma, this has a small chance of actually curing my disease. And, before you get your hopes up too much, I really mean small - less than 1%. But it does have perhaps as much as a 60% chance of controlling my lymphoma indefinitely. And since it is very targeted, it will not damage the rest of my body which might mean that I can eventually get back to a relatively normal life.
I do have a little bit of trepidation that I am going to share though. What if it does not control my lymphoma? I will be talking to the people running the study about when my first check-up will be in order to see if this drug is working like it should. Because I have a very aggressive form, a month can make a huge difference. I don't want to be in a position where, unbeknownst to us, my lymphoma has been growing quickly, and by the time we notice, it is too late to get me back into the state that I am currently in, where it can be controlled by a known regiment. I have done a lot of research, and I am willing to take this risk - everything that I try at this point is risky. But still, there is that little bit of trepidation.
I have beat crazy, ridiculous odds, over and over again, to still be alive after 18 months with this disease, and I know too much about probability and statistics to not have some fear over a new treatment. Still, between self-advocacy and tenacity, I am likely to make it through. And with one more dose of crazy luck, perhaps this will cure me after all.
It was not any surprise that I am back in relapse. I had a little bump on the side of my neck last week that I recognized as a lymph node growth, so the DLI and the Velcade have not been able to overwhelm my lymphoma. The PET scan showed that I have many dozen highly infected nodes throughout my neck, chest, lungs, extending down into my lower intestines.
The good news, as far as it goes, is that the nodes are small. My prognosis has not changed, we are sure that we can keep this in a state where, while not in remission, will not spread very quickly. My worst-case scenario is still several years.
However, I am on my way tomorrow to be enrolled in a study with a promising new drug called Ibrutinib. It has been pretty effective on blood cancers in the Phase 3 studies. It is not a chemo drug, but instead has a little fake glucose "hook" that the lymphoma love and suck up quickly. The other side of the drug has a marker which tells one's B-cells and T-cells that the lymphoma is a foreign body and should be destroyed. As an added bonus, the drug is a pill, which beats getting stuck with a needle every day.
If it goes well, I should be starting the drug on Friday. My oncologist is pleased to have me be able to get this drug because while the other therapy will mostly control my lymphoma, this has a small chance of actually curing my disease. And, before you get your hopes up too much, I really mean small - less than 1%. But it does have perhaps as much as a 60% chance of controlling my lymphoma indefinitely. And since it is very targeted, it will not damage the rest of my body which might mean that I can eventually get back to a relatively normal life.
I do have a little bit of trepidation that I am going to share though. What if it does not control my lymphoma? I will be talking to the people running the study about when my first check-up will be in order to see if this drug is working like it should. Because I have a very aggressive form, a month can make a huge difference. I don't want to be in a position where, unbeknownst to us, my lymphoma has been growing quickly, and by the time we notice, it is too late to get me back into the state that I am currently in, where it can be controlled by a known regiment. I have done a lot of research, and I am willing to take this risk - everything that I try at this point is risky. But still, there is that little bit of trepidation.
I have beat crazy, ridiculous odds, over and over again, to still be alive after 18 months with this disease, and I know too much about probability and statistics to not have some fear over a new treatment. Still, between self-advocacy and tenacity, I am likely to make it through. And with one more dose of crazy luck, perhaps this will cure me after all.
Read the first part of this entry with scared, big eyes (though still with a touch of "okay, this is reasonable"), but read the later part with more hope. I completely understand your trepidation, but you've already beaten so many long odds that I'm pulling for you to do it again!
ReplyDeleteThe only way out is through, one day at a time. Will you be staying in Burlington for an extended time?
ReplyDeleteLove and hugs,
Mike
Ibrutinib has sounded like the most hopeful approach I've read about. Will be hoping hard that it works its best effects on you. Sorry not see you when you were in Portland the other day. love -- Wendy
ReplyDeletePosting for David Millar, who can't post via his iPad:
ReplyDeleteDeep science makes me more religious. On so many levels we just don't know what is going on, not yet. I guess that uncertainty makes it easier and harder at the same time-- always a source for hope, but also for anxiety about the future. I wish there was more I could do, but there isn't-- lesson for the control freak.
David in Hawaii
Aw, I so wish you didn't have any more cancer stuff to deal with! The new drug does sound promising though, and with you keeping a finely tuned eye and body-sense on how things are going, I'm guessing you can mitigate much of the risk associated with an experimental treatment. Go Leif! (Which translates to: keep rallying when rallying is called for and resting when resting is called for.) Love ya!
ReplyDeleteYes, the Ibrutinib sounds very promising. There is a target T-Cell therapy that looks even more promising that is likely to be ready in the next few years. I think that the Ibrutinib, even if it is not a final cure, is likely to allow me to make it until the T-Cell therapy is ready. All in all, everything looks pretty promising for me, considering that just 5 years ago there is no way I would have made it this far. I don't recommend being on the very cutting edge of medicine, but it definitely beats being sick BEFORE there is a cutting edge.
ReplyDelete