It has been quite a while since my last post, and a lot has happened. The chemotherapy worked really well. My lymph-nodes got smaller, and my spleen shrank a little. My energy level was good. I was taking little walks every day.
The chemotherapy cycle last 21 days. I take the Revlimid that last for 14 days. The other two drugs are IV, but I only have them for the first 2 days of the cycle. Then I have a week to recover, before starting the next cycle
On day 18 of my cycle, four days after I stopped taking the RevLimid, I noticed that the lymph-node had started growing again. There were other signs that the lymphoma was shrugging off the treatment.
I had an appointment scheduled for today, Wednesday at DHMC to see Dr. Meehan, so I was not too worried about it. But on Monday, my labs, especially my white blood cells count was low enough that Dr. Connelly wanted to wait until she saw me before starting the next round of chemo.
Tuesday, I met with Dr. Connelly and mentioned that over the last two days or so, my energy levels have been dropping. We went over the blood labs that were drawn on Monday. It seems that I have picked up a fever - I am running at about 99.5 currently, but was 100 on Monday. I have some infection, but we don't yet know what it is. Probably something that something that a person with a working immune system would be able to shrug off and not even know that they had it.
The bad news is that this chemo regiment is not working. Each therapy knocks back the lymphoma, but the lymphoma gains more in the recovery week than I do. It is called kinetic failure. We currently have no back-up plan.
It is still worth staying on the treatment until we figure something out, because it at least slows the progress of the lymphoma. But I can not start my next round until I have this infection under control.
So I
I am stressed that Plan B did not work. On the bright side, such as it is, failure of treatment is one of the criterion for being accepted in the the Ibrutinib study, which is a more likely cure. It looks like my Graft vs Host disease is now under control, which is what was keeping out last time, and Dr. Meehan, Dr. Connelly and Dr. Sprague had a long conference call about the best way for me to enter the study.
But we will see what happens. So, currently, I am it Mid-coast Hospital for an indefinite period of time. Perhaps as little as three days, probably not longer than a week. They have better resources to take care of my infection. In fact, they have moved me into ICU. I feel pretty good, all things considering. I hurt in the morning, and have a hard time fulling waking up before about 11am. The nurses down at the special hematology/oncology unit, along with my fever and low blood pressure took this to mean that I was in rougher shape than I think that I am. I am certainly the most mobile patient in the ICU, and my insistence to get out of the room for even a little walk through them all for a loop. I did manage to get my walk in finally.
I only get one bar of cell service in here, so it is dicy to call out. You can call in using my new number:
(207) 619.4446
I am typically feeling up to chatting after about llam.
Leif
.
The chemotherapy cycle last 21 days. I take the Revlimid that last for 14 days. The other two drugs are IV, but I only have them for the first 2 days of the cycle. Then I have a week to recover, before starting the next cycle
On day 18 of my cycle, four days after I stopped taking the RevLimid, I noticed that the lymph-node had started growing again. There were other signs that the lymphoma was shrugging off the treatment.
I had an appointment scheduled for today, Wednesday at DHMC to see Dr. Meehan, so I was not too worried about it. But on Monday, my labs, especially my white blood cells count was low enough that Dr. Connelly wanted to wait until she saw me before starting the next round of chemo.
Tuesday, I met with Dr. Connelly and mentioned that over the last two days or so, my energy levels have been dropping. We went over the blood labs that were drawn on Monday. It seems that I have picked up a fever - I am running at about 99.5 currently, but was 100 on Monday. I have some infection, but we don't yet know what it is. Probably something that something that a person with a working immune system would be able to shrug off and not even know that they had it.
The bad news is that this chemo regiment is not working. Each therapy knocks back the lymphoma, but the lymphoma gains more in the recovery week than I do. It is called kinetic failure. We currently have no back-up plan.
It is still worth staying on the treatment until we figure something out, because it at least slows the progress of the lymphoma. But I can not start my next round until I have this infection under control.
So I
I am stressed that Plan B did not work. On the bright side, such as it is, failure of treatment is one of the criterion for being accepted in the the Ibrutinib study, which is a more likely cure. It looks like my Graft vs Host disease is now under control, which is what was keeping out last time, and Dr. Meehan, Dr. Connelly and Dr. Sprague had a long conference call about the best way for me to enter the study.
But we will see what happens. So, currently, I am it Mid-coast Hospital for an indefinite period of time. Perhaps as little as three days, probably not longer than a week. They have better resources to take care of my infection. In fact, they have moved me into ICU. I feel pretty good, all things considering. I hurt in the morning, and have a hard time fulling waking up before about 11am. The nurses down at the special hematology/oncology unit, along with my fever and low blood pressure took this to mean that I was in rougher shape than I think that I am. I am certainly the most mobile patient in the ICU, and my insistence to get out of the room for even a little walk through them all for a loop. I did manage to get my walk in finally.
I only get one bar of cell service in here, so it is dicy to call out. You can call in using my new number:
(207) 619.4446
I am typically feeling up to chatting after about llam.
Leif
.
Glad you're getting up and around -- give the nurses something to talk about. Hope this at least helps you get into the study...sending lots of love your way.
ReplyDeleteI really hope you can get into the Ibrutinib study fast. It sounds like an approach that can work. Am glad you feel well enough or determined enough to get up for a walk and that you are feeling pretty well.
ReplyDeleteThinkin' 'bout you with love. Thinkin' 'bout cancerius cells with a killin' feeling. Pickin the little bastards off with the Gatling gun of my mind.
ReplyDeleteYes, those ICU nurses aren't used to walking patients :-)
ReplyDeleteI was really sorry to hear you're having a setback, but then if it gets you into the trial, I guess that's good. Hang in there and give my love to Becky.
Paula
You sure are getting a ton of practice dealing with challenges this last year and a half--holey moley what a workout! Sending you heaps and heaps and heaps of love.
ReplyDeleteSuper bummed about the setback, but trying to hope for the Ibrutinib study with as much hope as I hoper can hope! Sending my best anti-cancer vibes from Texas.
ReplyDeleteHang in there bro. I reaaally don't want you to be the first human subject for our cancer-fighting nanobot trial just yet. Although the 'bots would almost certainly kill off all your cancer cells, they would most likely turn the rest of you into gray goo as well. Applied research is a true bitch!
ReplyDelete