This is a sufficiently important topic as to deserve its own heading -- I didn't want to bury it in the remarks about my meeting with BB.
As I mentioned before, I've come across at least one blog where the MM traveler was beginning reimmunization. There isn't a lot of literature on this subject, although I did come across a couple of somewhat older articles that recommended it. We also have a two year old son who will be getting additional vaccinations over the coming couple of years, some of which might involve a live vaccine.
Per BB, there is no need to be reimmnunized. Simple as that. One of his other doctors, BN, elaborated to a fellow traveler here that there has never been any data that demonstrates reimmunization is necessary.
Generally speaking, if it's good enough for BB, it's good enough for me. However I will ask SF for his opinion on this when I return to LA, hopefully next week.
Tuesday, July 28, 2009
Neupogen pain and the penultimate BB meeting
We're getting down to the nitty and the gritty of my primary treatment here.
I've been going to the infusion center for my daily labs and growth factor shot. On Sunday, we went in and my white blood count had moved up a bit from .6 to .74. So in two days, from .5, to .6, to .74. Slow progress, but steady and increasing. Platelets, meanwhile, fell from 49 to 24 to 22.
Sunday evening, I started getting that awful bone pain that I experienced after the second transplant while on neupogen. It was not as severe as the previous episode, which really was terrible and nearly sent me to the ER for IV pain management. However it was bad enough that I took some hillbilly heroin (Oxycontin) to take a bit of the edge off. The bones feel like they are being inflated from the inside and are about to burst. It sounds awful...and it is, pretty much. Although this time it was thankfully limited to the long bones in my leg and to a lesser degree my hips.
But I knew all this meant that the neupogen was doing its job. After the second transplant, it went from 1.4 to 8.5 overnight, although the pain was excruciating. The pain this time was only about half as bad, so I didn't expect it to be quite as much of an increase. But I was confident that it was going up.
Which brings me to an important topic: managing one's own care. I sat in the chair and pleasantly but matter-of-factly told the nurse that I wouldn't be accepting a neupogen shot today. It was doing its work, and if my whites were not sufficiently high, they could call me and I would come back and get a shot, but not until we saw the labs. They agreed.
They also wanted to give me a peripheral stick (i.e. draw blood from my arm) to check for a particular virus. They do this by rote every Monday for patients anticipating or going through neutropenia. I told them no thanks. It took them a little longer to give up on this one but I stuck to my guns.
Around this time, I got a call from the scheduler in BB's clinic and she had actually arranged proper conscious sedation (Velcade and Propofol) for the removal of my line and placement of the dual-lumen portacath. Hurray! I don't think I even had to complain to her this time!
So then, we met to meet with BB. It was a resoundingly positive meeting.
* I am "on my way to complete remission." We suspected this to be the case, and I'll be glad when it actually IS the case, but it is nice to be validated. The trace levels of M protein are so low that they cannot be accurately quantified (as I suspected). I asked BB specifically about another course of consolidation and he said no without a moment's hesitation. The Velcade, Revlimix, Dex cocktail I will be on for the next three years would be enough to eradicate whatever is left.
* In response to a specific question from Jill, he said that he did not think I would see the M-spike rise again. If it did, he would take me off maintenance and address it more directly. He said this occurs with some patients (these are mostly the high risk ones, I believe) but thought it would be very unlikely to happen with me.
* He reiterated that my bone marrow is now normal, and we both noted that this was before the consolidation, so if anything the bone marrow is MORE normal than it was before.
* He had the results of the fine needle aspiration of the lesion in my hip. The cells drawn from there showed no abnormalities under flow cytometry (a technique for counting and examining microscopic particles suspended in a stream of fluid) and showed no abnormal karyotypes (meaning I had normal chromosomes in those cells). In other words, in the most actively cancerous area in my body, the cells are now normal.
* The only thing that kept his exuberance in check was that he wanted to see my focal lesions in my bones go away. I told him I wanted the same thing! Recall that this will take months, so as long as there is meaningful progress by my next PET scan, which will probably be in early December, he will be pleased.
* As I anticipated, my white count went up to 3.5, so no neupogen was needed. He was slightly concerned about my CRP, which is now at around 35, until I pointed out to him that CRP had risen in each previous round of treatment as a result of hematopoesis. He seemed good with this and made a note of it in his dictation. My platelets crept up to 26. I will likely need an infusion of platelets prior to commencing my surgery on Wednesday AM as I my blood wont be able to clot if they do it now.
So the schedule for the week:
Tuesday - labs
Wednesday - labs, CVL removal and line placement
Thursday - discharge appointment with BB, movers pick up the car
Friday - fly home!!!
We are very excited, obviously.
As an additional note, we had a wonderful dinner with a fellow MM traveler and his wife last night. It reminded me a bit of the dinner that we had with LB and her husband back in January or February, where LB was kind enough to answer some questions that I had about her treatment here. It is heartening to be on the tail end of primary therapy and be able to help someone who is starting that part of their journey. Jan and Bruce are wonderful people with a very positive attitude and I have no doubt they will find success with the treatment here.
There will be more to come this week. The negative FNA was a definite positive piece of new information, so I feel like today was a bit of a watershed moment -- not quite the monument that CR will be when I hit it, but certainly a great day. Thank all of you for your support, positive thoughts and prayers. They have all contributed to me responding as well as I have.
I've been going to the infusion center for my daily labs and growth factor shot. On Sunday, we went in and my white blood count had moved up a bit from .6 to .74. So in two days, from .5, to .6, to .74. Slow progress, but steady and increasing. Platelets, meanwhile, fell from 49 to 24 to 22.
Sunday evening, I started getting that awful bone pain that I experienced after the second transplant while on neupogen. It was not as severe as the previous episode, which really was terrible and nearly sent me to the ER for IV pain management. However it was bad enough that I took some hillbilly heroin (Oxycontin) to take a bit of the edge off. The bones feel like they are being inflated from the inside and are about to burst. It sounds awful...and it is, pretty much. Although this time it was thankfully limited to the long bones in my leg and to a lesser degree my hips.
But I knew all this meant that the neupogen was doing its job. After the second transplant, it went from 1.4 to 8.5 overnight, although the pain was excruciating. The pain this time was only about half as bad, so I didn't expect it to be quite as much of an increase. But I was confident that it was going up.
Which brings me to an important topic: managing one's own care. I sat in the chair and pleasantly but matter-of-factly told the nurse that I wouldn't be accepting a neupogen shot today. It was doing its work, and if my whites were not sufficiently high, they could call me and I would come back and get a shot, but not until we saw the labs. They agreed.
They also wanted to give me a peripheral stick (i.e. draw blood from my arm) to check for a particular virus. They do this by rote every Monday for patients anticipating or going through neutropenia. I told them no thanks. It took them a little longer to give up on this one but I stuck to my guns.
Around this time, I got a call from the scheduler in BB's clinic and she had actually arranged proper conscious sedation (Velcade and Propofol) for the removal of my line and placement of the dual-lumen portacath. Hurray! I don't think I even had to complain to her this time!
So then, we met to meet with BB. It was a resoundingly positive meeting.
* I am "on my way to complete remission." We suspected this to be the case, and I'll be glad when it actually IS the case, but it is nice to be validated. The trace levels of M protein are so low that they cannot be accurately quantified (as I suspected). I asked BB specifically about another course of consolidation and he said no without a moment's hesitation. The Velcade, Revlimix, Dex cocktail I will be on for the next three years would be enough to eradicate whatever is left.
* In response to a specific question from Jill, he said that he did not think I would see the M-spike rise again. If it did, he would take me off maintenance and address it more directly. He said this occurs with some patients (these are mostly the high risk ones, I believe) but thought it would be very unlikely to happen with me.
* He reiterated that my bone marrow is now normal, and we both noted that this was before the consolidation, so if anything the bone marrow is MORE normal than it was before.
* He had the results of the fine needle aspiration of the lesion in my hip. The cells drawn from there showed no abnormalities under flow cytometry (a technique for counting and examining microscopic particles suspended in a stream of fluid) and showed no abnormal karyotypes (meaning I had normal chromosomes in those cells). In other words, in the most actively cancerous area in my body, the cells are now normal.
* The only thing that kept his exuberance in check was that he wanted to see my focal lesions in my bones go away. I told him I wanted the same thing! Recall that this will take months, so as long as there is meaningful progress by my next PET scan, which will probably be in early December, he will be pleased.
* As I anticipated, my white count went up to 3.5, so no neupogen was needed. He was slightly concerned about my CRP, which is now at around 35, until I pointed out to him that CRP had risen in each previous round of treatment as a result of hematopoesis. He seemed good with this and made a note of it in his dictation. My platelets crept up to 26. I will likely need an infusion of platelets prior to commencing my surgery on Wednesday AM as I my blood wont be able to clot if they do it now.
So the schedule for the week:
Tuesday - labs
Wednesday - labs, CVL removal and line placement
Thursday - discharge appointment with BB, movers pick up the car
Friday - fly home!!!
We are very excited, obviously.
As an additional note, we had a wonderful dinner with a fellow MM traveler and his wife last night. It reminded me a bit of the dinner that we had with LB and her husband back in January or February, where LB was kind enough to answer some questions that I had about her treatment here. It is heartening to be on the tail end of primary therapy and be able to help someone who is starting that part of their journey. Jan and Bruce are wonderful people with a very positive attitude and I have no doubt they will find success with the treatment here.
There will be more to come this week. The negative FNA was a definite positive piece of new information, so I feel like today was a bit of a watershed moment -- not quite the monument that CR will be when I hit it, but certainly a great day. Thank all of you for your support, positive thoughts and prayers. They have all contributed to me responding as well as I have.
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