Had a nice breakfast of leftover indian food, and a volenteer came in to Hope Lodge and made a nice breakfast of pancakes and eggs for everyone that was staying there that day. Real maple syrup for the pancakes. I had one even though I was already pretty full from saag paneer.
I met with Hannah (the Ibrutinib nurse coordinator) at 8:30am. She was so upset that she had called me and confirmed that I was in this study and then it turned out that I was not. She hoped that I would be able to go one more week, show that the Graft vs Host Disease (GvHD) was under control, and enter the study anyway. I explained that in my case, that was probably not an option.
Unfortunately, I could not just start a new treatment, get the lymphoma under control and then switch over to the study. The point of an access study is to get the treatment to patients that are NOT responding to other treatment. If I start a treatment, and respond to it then I can not get into the study. We have to show FAILURE of the treatment to be able to get back on list for the Ibrutinib study. She had talked to Dr. Sprague about it, and Dr. Sprague (who was not in that day), had discussed it with the study director. They had decided that they were willing to use a pretty flexible definition of "not responding" to treatment. For example, I have a reaction to Rituxin (one of the drugs that is in my plan B treatment). We mitigate it by giving me the Rituxin VERY slowly. We don't have to. We could give it to me just fast enough to elicit a reaction, and that might be construed as failure of treatment. This gives some possibility to get back on the Ibrutinib study in a couple of months. Definitely not a PLAN A sort of path, but you search for solutions when you can.
I wrote Dr. Sprague a nice note, thanking him for arguing my case to the study director. If he did all he could have, he will appreciate it, but if he weaseled a bit, I think he will try harder next time. :) The Prednisone / Ibrutinib conflict may well be more serious than I appreciate, and that it really is in my best interest not to be on both drugs at the same time. For example, brain hemorrhage is listed as a possible side effect of Ibrutinib.
It was SO nice to get my thoracentesis. I hate surgery, but this is relatively minor and painless, and I really love being able to breath. It was nice to be getting some oxygen to my head. Here I am, it is 10:30 am. I am not in a treatment program. Dr Meehan (my primary oncologist) assumed that I WOULD be in a treatment program - the Ibrutinib study, and there is no back-up plan in place ready to go. I have lived long enough with this disease to be in uncharted territory. No one know what treatment plan might work. There is no proscribed plan. I know that at this point, Dr. Meehan is calling his colleagues around the country (he excels at collaboration) and working to come up with the best possible plan, given the circumstance.
But I am in complete limbo. I definitely wanted to start treatment on Friday, if possible, rather than have to wait through the weekend and start on Monday, or even Tuesday. Tuesday (the day that Dr Connelly - my local oncologist is at my local hospital - otherwise she is at Midcoast, down in Brunswick). Do I drive to Dartmouth-Hitchcock? It is only a couple hours from Burlington. I definitely did not want to drive back to Brooks and then have to drive out to Dartmouth on Friday. Or Monday, for that matter. Did I need to go to Midcoast, down in Brunswick? That is a 6 hr drive, and I would need to get a hotel room. Do I just head back to Brooks? I had no idea. I called Kate (the nurse coordinator at Dartmouth Hitchcock), and she assured me that they were working to get something in place and would let me know as soon as possible.
For the meantime, I went ahead and reserved another night at Hope Lodge. It is free to cancer patients seeking treatment at Fletcher-Allen (the hospital in Burlington), and I decided, close enough. Also, the manager of Hope Lodge called me to let me know that a volunteer was coming in to cook indian food for supper that night. Isn't that sweet of him? Calling me to let me know because he knew that I liked indian food, so that I wouldn't make other plans without knowing about it.
Liza, my temporary caregiver for the trip, and I went and got Vietnamese food from this little food market that also has a restaurant, where the waitress is clearly the owner's 12 year-old daughter. The ambiance is horrible (being in the middle of a grocery shop with a large-screen tv permanently on the Disney channel), but the food is delicious. We took our order to go and ate back at Hope Lodge.
I got a call about 3:00 pm. While I was hoping to go to Dartmouth-Hitchcock and be seen by Dr. Meehan (I really just wanted some hand-holding here - it had been an unsettling day), the plan was to start a treatment of Rituxin, Bendamustine, and a new drug that had been released in March called Revlamid. Revlamid is a pill and has been shown to be effective with lymphoma, but no-one know the mechanism that it works on. It is related to thalidomide, so there are tons of restrictions about the dangers of getting pregnant, none of which apply to me. Thankfully. It was developed for myeloma, and just recently was found to have a benefit for lymphoma. This treatment could all be done at Waldo Hospital, and I am schedule to start on Monday at 8:30. This will be a long day because I have to take the Rituxan so slowly. Also I am having labs drawn and a thoracentesis. Unfortunately, I will not have a chance to talk with Dr. Connelly, but it better to start right away, and I will probably meet with her on Wednesday.
Dinner was good, went to bed early, and had nice drive home. thought the scenery was nice on the way out, but on the way back it was just peak. I wanted to close my eyes and rest for a while, but everything was so gorgeous that I just stared out the window and the colors and the looming blue mountains in the backgrounds, the dark of the conifers, the sparkling little brooks. One of the most beautiful autumn scenes I have seen in the last 10 years or so - and it is not like where I live is not breath-taking. It was a lovely drive back, and it was good to get home.
Leif
I met with Hannah (the Ibrutinib nurse coordinator) at 8:30am. She was so upset that she had called me and confirmed that I was in this study and then it turned out that I was not. She hoped that I would be able to go one more week, show that the Graft vs Host Disease (GvHD) was under control, and enter the study anyway. I explained that in my case, that was probably not an option.
Unfortunately, I could not just start a new treatment, get the lymphoma under control and then switch over to the study. The point of an access study is to get the treatment to patients that are NOT responding to other treatment. If I start a treatment, and respond to it then I can not get into the study. We have to show FAILURE of the treatment to be able to get back on list for the Ibrutinib study. She had talked to Dr. Sprague about it, and Dr. Sprague (who was not in that day), had discussed it with the study director. They had decided that they were willing to use a pretty flexible definition of "not responding" to treatment. For example, I have a reaction to Rituxin (one of the drugs that is in my plan B treatment). We mitigate it by giving me the Rituxin VERY slowly. We don't have to. We could give it to me just fast enough to elicit a reaction, and that might be construed as failure of treatment. This gives some possibility to get back on the Ibrutinib study in a couple of months. Definitely not a PLAN A sort of path, but you search for solutions when you can.
I wrote Dr. Sprague a nice note, thanking him for arguing my case to the study director. If he did all he could have, he will appreciate it, but if he weaseled a bit, I think he will try harder next time. :) The Prednisone / Ibrutinib conflict may well be more serious than I appreciate, and that it really is in my best interest not to be on both drugs at the same time. For example, brain hemorrhage is listed as a possible side effect of Ibrutinib.
It was SO nice to get my thoracentesis. I hate surgery, but this is relatively minor and painless, and I really love being able to breath. It was nice to be getting some oxygen to my head. Here I am, it is 10:30 am. I am not in a treatment program. Dr Meehan (my primary oncologist) assumed that I WOULD be in a treatment program - the Ibrutinib study, and there is no back-up plan in place ready to go. I have lived long enough with this disease to be in uncharted territory. No one know what treatment plan might work. There is no proscribed plan. I know that at this point, Dr. Meehan is calling his colleagues around the country (he excels at collaboration) and working to come up with the best possible plan, given the circumstance.
But I am in complete limbo. I definitely wanted to start treatment on Friday, if possible, rather than have to wait through the weekend and start on Monday, or even Tuesday. Tuesday (the day that Dr Connelly - my local oncologist is at my local hospital - otherwise she is at Midcoast, down in Brunswick). Do I drive to Dartmouth-Hitchcock? It is only a couple hours from Burlington. I definitely did not want to drive back to Brooks and then have to drive out to Dartmouth on Friday. Or Monday, for that matter. Did I need to go to Midcoast, down in Brunswick? That is a 6 hr drive, and I would need to get a hotel room. Do I just head back to Brooks? I had no idea. I called Kate (the nurse coordinator at Dartmouth Hitchcock), and she assured me that they were working to get something in place and would let me know as soon as possible.
For the meantime, I went ahead and reserved another night at Hope Lodge. It is free to cancer patients seeking treatment at Fletcher-Allen (the hospital in Burlington), and I decided, close enough. Also, the manager of Hope Lodge called me to let me know that a volunteer was coming in to cook indian food for supper that night. Isn't that sweet of him? Calling me to let me know because he knew that I liked indian food, so that I wouldn't make other plans without knowing about it.
Liza, my temporary caregiver for the trip, and I went and got Vietnamese food from this little food market that also has a restaurant, where the waitress is clearly the owner's 12 year-old daughter. The ambiance is horrible (being in the middle of a grocery shop with a large-screen tv permanently on the Disney channel), but the food is delicious. We took our order to go and ate back at Hope Lodge.
I got a call about 3:00 pm. While I was hoping to go to Dartmouth-Hitchcock and be seen by Dr. Meehan (I really just wanted some hand-holding here - it had been an unsettling day), the plan was to start a treatment of Rituxin, Bendamustine, and a new drug that had been released in March called Revlamid. Revlamid is a pill and has been shown to be effective with lymphoma, but no-one know the mechanism that it works on. It is related to thalidomide, so there are tons of restrictions about the dangers of getting pregnant, none of which apply to me. Thankfully. It was developed for myeloma, and just recently was found to have a benefit for lymphoma. This treatment could all be done at Waldo Hospital, and I am schedule to start on Monday at 8:30. This will be a long day because I have to take the Rituxan so slowly. Also I am having labs drawn and a thoracentesis. Unfortunately, I will not have a chance to talk with Dr. Connelly, but it better to start right away, and I will probably meet with her on Wednesday.
Dinner was good, went to bed early, and had nice drive home. thought the scenery was nice on the way out, but on the way back it was just peak. I wanted to close my eyes and rest for a while, but everything was so gorgeous that I just stared out the window and the colors and the looming blue mountains in the backgrounds, the dark of the conifers, the sparkling little brooks. One of the most beautiful autumn scenes I have seen in the last 10 years or so - and it is not like where I live is not breath-taking. It was a lovely drive back, and it was good to get home.
Leif
I dunno how you keep your equilibrium through all this but you do. I hope the weekend eases by and that Monday is the beginning of a good treatment plan.
ReplyDeleteSome days it is harder than others, I tell you. I try to take it one day at a time, sometimes just hour by hour. I take great pleasure in little things, and try to keep in mind that life is an adventure, and no-one knows the future. Hanging on to loss is the root of sadness. Oh, the plans you imagined have changed? Try to let go, and be in the moment. I think that is all one can do. :)
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