I am sitting in the Little Rock airport right now, after a successful visit. I have a lot to report, both medically and in terms of local color -- it may have to be in a couple of parts if I get interrupted by the departure of my flight!
Bloodwork showed no monoclonal protein under immunifixation. WBC was at 3.8, RBC at 4.5, Hemiglobin at 14.1, platelets at 117. All on the low side of norms but normal nonetheless, with the exception of platelets which are just a bit below normal. BB was quite pleased with all of this, particularly the platelets which he said were holding up impressively. Seem low to me, but he's the man, so...
Marrow was even better. No monoclonal protein, negative for plasma cell myeloma, and plasma cells at less than 2 percent. Additionally, there are oligoclonal indistinct bands which are, to use BB's words, "indicative of profound remission status."
The MRI was mostly stable, although it did show a slight decrease in size of several lesions. We need these to continue to heal, although that can take years. We discussed another course of Zometa, which I will get soon. Probably after I get my teeth cleaned as dental work and Zometa do not get along and I am loooooong overdue for a teeth cleaning.
The PET scan was good as well. Reduced SUV (the measure of cancer activity) from 2.0 to 1.3. I am just learning how to interpret this -- evidently baseline is 1.0, and anything higher than 2.5 is very likely cancer activity. For now, 1.3 is less than 2.0 and I am pretty sure I was at 3.7 when I got my first scan although I don't know for sure. At any rate, the decline is a very positive thing. The PET does continue to show over 100 osteolytic lesions. BB mentioned that these will always be there. I am not totally certain as to why -- I need to listen to our conversation again and will report if there is more to be said on the subject.
We then reviewed, as is his style, the newest available data from total therapy 3 and 4. Some salient observations:
1. The response curves are totally superimposable: meaning the data through the first three years or so of Total Therapy four are effectively the exact same as the first three years of the now eight odd years of data from Total Therapy 3. That means I have visibility about five years down the road.
2. There is effectively no difference in response between the lite and standard arms of therapy. Lite here is anything but lite: it is still MVDTPACE to start, VDTPACE for induction, two transplants with bridging (thal/dex), consolidation with dose-reduced VDT-PACE and then VRD in maintenance. But there is one less cycle of each induction and consolidation, and the transplants themselves split the high dose melphalan over four days to increase tolerance and reduce toxicity.
3. The recurrence curve for low-risk disease appears to be perfectly flat after year three. This is extremely important as it comes earlier than was expected. To the doubters, consider this: of 167 low-risk patients that achieved complete remission, only 9 percent fell out of remission during the first 40 months after achieving complete remission. What other protocol for a newly-diagnosed, low risk patient can promise that they have an over 90 percent chance of remaining in remission for three years once they achieve it (recall only 60 percent achieve complete remission; others may nonetheless have long remissions with a residual MGUS type disease)? Even more striking: not a SINGLE one of the 149 patients in remission at 3.5 years has lost remission almost three years later: one hundred percent of these remained in remission after six years. Not a single incidence of recurrence. Cure? Or mere coincidence?
Of those patients with my Proliferation Subtype (as defined by gene analysis) not a single one has lost remission, period. It is harder to achieve remission with this sub type, which is usually associated with high risk disease. There are only 14 data points of low-risk disease with the PR subtype so it is not as statistically robust but it still works for me!
Eveeything at this point is in the direction of cure, provided I keep up with maintenance. I have not felt any neuropathy since Velcade was interrupted 10 days ago. Nonetheless, BB and I feel that it is important to remain on the higher dose for as long as I can to ensure the most favorable outcome.
I asked BB about the validity of PCR tests to quantify residual disease. He said these were worthless. He said that in random studies they have seen PCR indications of molecular remission in patients who have multiple FDG-active lesions under PET Scan. So there goes that.
I also asked him about cutting off maintenance after three years versus the longer revlimid maintenance that has been discussed by some doctors, such as RV, or perhaps even BD based on his comments on the maintenance therapy findings yesterday in the pre-ASCO (American Society of Clinical Oncologists) conference next week. BB is currently doing a randomized trial of revlimid at 5mg daily versus no revlimid to see the impact. BB told me before that he does not randomize unless he thinks he knows the answer is "there is no difference." This is one of the reasons he doesn't submit Total Therapy to double blind testing. I told him he has two more years to develop data before we have to decide what to do!
Speaking of ASCO, Bart will be presenting some new materials on the ongoing fight against high-risk myeloma, where recent data suggests improvements and the presence of a cure signature, which though significantly lower in likelihood than cure with low-risk disease, is still meaningful!
More to come later, including some good local color and humor!
Saturday, May 29, 2010
Friday, May 28, 2010
All dressed up and nowhere to go...
So the answer to the question of "can you do a kyphoplasty on vertebrae that have already been through a vertebroplasty?" is "no".
Would have been good to know before we got up this morning to be at the hospital nice and early!
Oh well...I'll never get that lost height back but it's not the end of the world. We meet with BB this afternoon and I will have a full report at that time.
Would have been good to know before we got up this morning to be at the hospital nice and early!
Oh well...I'll never get that lost height back but it's not the end of the world. We meet with BB this afternoon and I will have a full report at that time.
Thursday, May 27, 2010
Hello from Arkansas
Or should I say "howdy."
We got here Tuesday night and ate a great pizza at Damgoode Pies. One of the things I miss around here.
Yesterday was a verrrrry long day. Went to the hospital at 5AM to have my port accessed. I didn't want half a dozen blood draws, IV inserts, etc. After that it was a 6AM PET scan, 8:30AM visit with the research nurse here, 9:30AM x-rays, 10AM EKG, 11AM check-in at the MRI and after two hours in a tube with long banging noises, a celebratory late lunch at Whole Hog BBQ. Then I worked until around midnight.
Today, we do bone marrow. A bit less hectic than yesterday.
I have seen a couple of very young people here on this trip, including a girl yesterday who looked like she cannot have been older than 25.
I also met, on the flight from Dallas to Little Rock, a woman who completed Total Therapy 1 in 1996. Almost fourteen years later, she has no trace of the disease. And she did not have the benefit of thalidomide, revlimid or velcade. Basically she had old chemotherapy (probably VAD) and two transplants. And no maintenance therapy other than perhaps dex. Remarkable proof that people are being cured.
My appointment with BB is on Friday -- will report what I learn!
We got here Tuesday night and ate a great pizza at Damgoode Pies. One of the things I miss around here.
Yesterday was a verrrrry long day. Went to the hospital at 5AM to have my port accessed. I didn't want half a dozen blood draws, IV inserts, etc. After that it was a 6AM PET scan, 8:30AM visit with the research nurse here, 9:30AM x-rays, 10AM EKG, 11AM check-in at the MRI and after two hours in a tube with long banging noises, a celebratory late lunch at Whole Hog BBQ. Then I worked until around midnight.
Today, we do bone marrow. A bit less hectic than yesterday.
I have seen a couple of very young people here on this trip, including a girl yesterday who looked like she cannot have been older than 25.
I also met, on the flight from Dallas to Little Rock, a woman who completed Total Therapy 1 in 1996. Almost fourteen years later, she has no trace of the disease. And she did not have the benefit of thalidomide, revlimid or velcade. Basically she had old chemotherapy (probably VAD) and two transplants. And no maintenance therapy other than perhaps dex. Remarkable proof that people are being cured.
My appointment with BB is on Friday -- will report what I learn!
Friday, May 21, 2010
Neuropathy and other notes
I noticed yesterday that for much of the day, I had a barely perceptible tingle in my feet. I first noticed it around noon and it persisted until I went to bed. Today, I feel it less, but it is still there.
I wouldn't say it's enough to get me overwrought, but I am starting to get a tiny bit concerned. I doubt it is from the Revlimid, since I didn't develop neuropathy while on Thalidomide and that's much more likely to cause it. The more likely culprit, then, is the Velcade.
I am told Velcade-related neuropathy can go away if the Velcade is discontinued. I am obviously not going to do that, but I might see if they want to dose reduce back to 1mg/m2 from my 1.3. The higher dose is because of my unfavorable sub-type of the disease, though...so even dose-reducing that could deter me from my progress which I don't want to do.
I visit Little Rock next week for PET, MRI, bone marrow and potentially kyphoplasty on my back. It should be an interesting few days, as always! I wasn't originally going to submit to the PET but I confess that I'm interested in getting as much information as possible given that the stray monoclonal light chain wandered into the immunofixation analysis the other day.
Among the questions I want to ask BB about:
- neuropathy
- reimmunization thoughts
- use of polymerase chain reaction test to determine molecular remission
Obviously I'm also keen to see if I have reached "MRI complete remission" yet.
Lastly, I was invited by ASCO (the American Society of Clinical Oncologists) to attend their upcoming conference in June. I would ***LOVE*** to do this, but my schedule will not permit it. However I do hope to do the next one.
I wouldn't say it's enough to get me overwrought, but I am starting to get a tiny bit concerned. I doubt it is from the Revlimid, since I didn't develop neuropathy while on Thalidomide and that's much more likely to cause it. The more likely culprit, then, is the Velcade.
I am told Velcade-related neuropathy can go away if the Velcade is discontinued. I am obviously not going to do that, but I might see if they want to dose reduce back to 1mg/m2 from my 1.3. The higher dose is because of my unfavorable sub-type of the disease, though...so even dose-reducing that could deter me from my progress which I don't want to do.
I visit Little Rock next week for PET, MRI, bone marrow and potentially kyphoplasty on my back. It should be an interesting few days, as always! I wasn't originally going to submit to the PET but I confess that I'm interested in getting as much information as possible given that the stray monoclonal light chain wandered into the immunofixation analysis the other day.
Among the questions I want to ask BB about:
- neuropathy
- reimmunization thoughts
- use of polymerase chain reaction test to determine molecular remission
Obviously I'm also keen to see if I have reached "MRI complete remission" yet.
Lastly, I was invited by ASCO (the American Society of Clinical Oncologists) to attend their upcoming conference in June. I would ***LOVE*** to do this, but my schedule will not permit it. However I do hope to do the next one.
Monday, May 17, 2010
Some random observations
Hello folks.
First of all, I got another chest-cold. My darling little son had a runny nose on Mother's Day as I was playing with him at the park, and it was just a matter of time. I started feeling sick on Tuesday night, and I started taking Tamiflu and Augmentin and I had hopes that it was going to be gone as I felt good yesterday, but today it's gotten worse. So I will continue to monitor it.
Second, I switched my Velcade to Monday this week because of some potential emergency work travel tomorrow. With one less day to recover from the last infusion, I'm not surprised my counts were on the suppressed side but they were a bit worse than I thought. WBC at 2.9, platelets at 108. HGB was at 14, which is pretty good for me.
Third, I got the Velcade in the morning. Velcade has some side effects which I've mostly been able to avoid, but they include flu-like symptoms, headache, and fever. Normally, I take dex which suppresses all these symptoms. Regular readers may recall one of my primary care doctors, who is an infectious disease specialist, surmised that this was why steroids were taken at the same time as Velcade. Well, here's the problem. Normally I get Velcade in the afternoon, take the Dex about eight hours later, and then sleep. Today, I got Velcade at 8AM, and haven't taken Dex. 12 hours later I feel horrible -- fever, headache, flu-like symptoms. So the moral of the story is: make sure, when taking Velcade, to go to sleep less than 8 hours later.
First of all, I got another chest-cold. My darling little son had a runny nose on Mother's Day as I was playing with him at the park, and it was just a matter of time. I started feeling sick on Tuesday night, and I started taking Tamiflu and Augmentin and I had hopes that it was going to be gone as I felt good yesterday, but today it's gotten worse. So I will continue to monitor it.
Second, I switched my Velcade to Monday this week because of some potential emergency work travel tomorrow. With one less day to recover from the last infusion, I'm not surprised my counts were on the suppressed side but they were a bit worse than I thought. WBC at 2.9, platelets at 108. HGB was at 14, which is pretty good for me.
Third, I got the Velcade in the morning. Velcade has some side effects which I've mostly been able to avoid, but they include flu-like symptoms, headache, and fever. Normally, I take dex which suppresses all these symptoms. Regular readers may recall one of my primary care doctors, who is an infectious disease specialist, surmised that this was why steroids were taken at the same time as Velcade. Well, here's the problem. Normally I get Velcade in the afternoon, take the Dex about eight hours later, and then sleep. Today, I got Velcade at 8AM, and haven't taken Dex. 12 hours later I feel horrible -- fever, headache, flu-like symptoms. So the moral of the story is: make sure, when taking Velcade, to go to sleep less than 8 hours later.
Wednesday, May 12, 2010
Quick update with good news from my labs last week
Most importantly, serum immunofixation is back to: "No monoclonal proteins detected." Complete remission. Phew! I am prepared to chalk up the previous reading to residual noise that is being eliminated through VRD for another 28 months or so.
After a week off Revlimid, I guess I expected my counts to recover more than they did. Whites remain at 4.2, which isn't horrible but is a bit on the low side. HGB is 13. Again, not horrible, but a bit on the low side. Platelets are 108. These are pretty darn low, but previous experience indicates that they usually recover with a bit of lag -- that is, after the first week back on Revlimid they usually go up.
When the deal I am running right now subsides (it should do so this week, although I've been thinking / hoping / praying that would be the case every day for two weeks now) I will hopefully have time to blog more regularly and put some data up. I would think that those in maintenance (or induction, depending on protocol) using VRD would be interested to see these counts over time.
I go back to Arkansas in two weeks for the Full Monty of tests: PET, MRI, bone marrow, bloodwork. I may even submit to a gene array (more marrow pulled out) but I might wait until their own data there shows that I no longer have any monoclonal protein. Right now, they have the hedged version of that: monoclonal protein might exists but we can't find it. This is still complete remission, but I want stringest complete remission / molecular remission, dammit! And once that happens, I did promise BB and BJ that they could do another gene array on me. So...I guess that will be a good problem to have!
I am quite tired these days...some of it is probably the ungodly hours (literally 18 hours a day, 7 days a week for the past month) and some of it is the drugs. I also notice that my muscles deteriorate. I haven't had time to run; when I did, I was winded pretty quickly but I will try to pick that back up. But in the morning in bed, if I try to even do a good stretch, my calves instantly cramp up. It's quite unpleasant and a bit disconcerting.
That said, I am managing stress VERY differently than I used to. I used to run around in a panic and I would have this desparate, pit-of-the-stomach dread that would rise up with some regularity when I was under the gun. Now, I nip that in the bud. When the workplace is unreasonable, I refuse to let it drive me crazy. As a result, there have only been two days in the past month where I've really felt stressed out. It used to be more like three days a week like that. So my post-cancer self is managing this a bit better -- which is critical as I'm pretty sure that stress is what gave me the cancer in the first place.
And otherwise, I feel good!
I might also add that the testosterone shot that I got in the ol' gluteus maximus hurt like a sonofabiscuit for about three days. The other shots were painless -- this one felt like deep bone pain, almost (although I know it was muscles and not bone).
Hope you are all well!
After a week off Revlimid, I guess I expected my counts to recover more than they did. Whites remain at 4.2, which isn't horrible but is a bit on the low side. HGB is 13. Again, not horrible, but a bit on the low side. Platelets are 108. These are pretty darn low, but previous experience indicates that they usually recover with a bit of lag -- that is, after the first week back on Revlimid they usually go up.
When the deal I am running right now subsides (it should do so this week, although I've been thinking / hoping / praying that would be the case every day for two weeks now) I will hopefully have time to blog more regularly and put some data up. I would think that those in maintenance (or induction, depending on protocol) using VRD would be interested to see these counts over time.
I go back to Arkansas in two weeks for the Full Monty of tests: PET, MRI, bone marrow, bloodwork. I may even submit to a gene array (more marrow pulled out) but I might wait until their own data there shows that I no longer have any monoclonal protein. Right now, they have the hedged version of that: monoclonal protein might exists but we can't find it. This is still complete remission, but I want stringest complete remission / molecular remission, dammit! And once that happens, I did promise BB and BJ that they could do another gene array on me. So...I guess that will be a good problem to have!
I am quite tired these days...some of it is probably the ungodly hours (literally 18 hours a day, 7 days a week for the past month) and some of it is the drugs. I also notice that my muscles deteriorate. I haven't had time to run; when I did, I was winded pretty quickly but I will try to pick that back up. But in the morning in bed, if I try to even do a good stretch, my calves instantly cramp up. It's quite unpleasant and a bit disconcerting.
That said, I am managing stress VERY differently than I used to. I used to run around in a panic and I would have this desparate, pit-of-the-stomach dread that would rise up with some regularity when I was under the gun. Now, I nip that in the bud. When the workplace is unreasonable, I refuse to let it drive me crazy. As a result, there have only been two days in the past month where I've really felt stressed out. It used to be more like three days a week like that. So my post-cancer self is managing this a bit better -- which is critical as I'm pretty sure that stress is what gave me the cancer in the first place.
And otherwise, I feel good!
I might also add that the testosterone shot that I got in the ol' gluteus maximus hurt like a sonofabiscuit for about three days. The other shots were painless -- this one felt like deep bone pain, almost (although I know it was muscles and not bone).
Hope you are all well!
Wednesday, May 5, 2010
White counts, side effect roundup, bad dreams, etc.
Howdy folks.
So the white count mystery from last week is just that: a mystery. Yesterday they were back down at three-and-change (I'm going to demand my labs through my always-excellent advocate, PinnacleCare) so in the "new normal" range (i.e. suppressed from the Revlimid but not to dangerous levels). I am off the Revlimid this week so it should be able to recovery slightly before being suppressed again for another three weeks.
No explanation of why it spiked up to 14. Could have been response to exposure to a potential bug, could have been something else. Since it had detail behind it and was heavy on granulocytes I am reasonably certain it was my blood that was reported upon rather than a lab error.
In an effort to reduce the number of pills in my medicine cabinet, I swapped out (momentarily) the ZMA supplement for pure magnesium pills that I was prescribed during my hospital stay in Arkansas last year. I have been taking 500mg of magnesium a day (versus the 600 that comes from the ZMA). Got a cramp in the small of my foot last night which was pretty painful but generally they are not a problem any longer. When I've depleted this bottle of magnesium pills, I will go back on the ZMA.
As far as other side effects, I've not felt the tingling in the legs since I blogged about it a couple of weeks ago, so I don't think I'm at serious risk for neuropathy. I made sure to get the brand name MetaNX rather than the generic in an effort to have B vitamins that are more easily absorbed. Hopefully that will carry the day.
I did have a curious side effect -- another bad dream, fairly vivid. These aren't nightmares, per se, in terms of physical danger or monsters or phantasmagorical material. Rather, they are emotionally dreadful situations (e.g. horrible fights with family members and children) that are realistic enough to be jarring long after one wakes from them and proves them to be shadows. I had two or three of these with terrible intensity during my induction and consolidation chemotherapy and noted them in the blog at that time -- hadn't had one since and this wasn't *quite* as bad, but it does make we wonder if this curious side-effect is a result of Velcade and Dex (the latter of which I received in very high dose during induction and consolidation) rather than the other chemo agents. Has anybody else experienced these dreams?
So the white count mystery from last week is just that: a mystery. Yesterday they were back down at three-and-change (I'm going to demand my labs through my always-excellent advocate, PinnacleCare) so in the "new normal" range (i.e. suppressed from the Revlimid but not to dangerous levels). I am off the Revlimid this week so it should be able to recovery slightly before being suppressed again for another three weeks.
No explanation of why it spiked up to 14. Could have been response to exposure to a potential bug, could have been something else. Since it had detail behind it and was heavy on granulocytes I am reasonably certain it was my blood that was reported upon rather than a lab error.
In an effort to reduce the number of pills in my medicine cabinet, I swapped out (momentarily) the ZMA supplement for pure magnesium pills that I was prescribed during my hospital stay in Arkansas last year. I have been taking 500mg of magnesium a day (versus the 600 that comes from the ZMA). Got a cramp in the small of my foot last night which was pretty painful but generally they are not a problem any longer. When I've depleted this bottle of magnesium pills, I will go back on the ZMA.
As far as other side effects, I've not felt the tingling in the legs since I blogged about it a couple of weeks ago, so I don't think I'm at serious risk for neuropathy. I made sure to get the brand name MetaNX rather than the generic in an effort to have B vitamins that are more easily absorbed. Hopefully that will carry the day.
I did have a curious side effect -- another bad dream, fairly vivid. These aren't nightmares, per se, in terms of physical danger or monsters or phantasmagorical material. Rather, they are emotionally dreadful situations (e.g. horrible fights with family members and children) that are realistic enough to be jarring long after one wakes from them and proves them to be shadows. I had two or three of these with terrible intensity during my induction and consolidation chemotherapy and noted them in the blog at that time -- hadn't had one since and this wasn't *quite* as bad, but it does make we wonder if this curious side-effect is a result of Velcade and Dex (the latter of which I received in very high dose during induction and consolidation) rather than the other chemo agents. Has anybody else experienced these dreams?
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