ASH Monday, December 8, 2014
Yi Lisa Hwa, DNP, Mayo Clinic in Rochester, MN, noticed that one of her patients MM numbers improved when she prescribed the beta blocker propanolol. So she took a look back in time. In a retrospective study of Mayo patients seen between 1993 and 2010, 136 patients who had taken beta blockers were compared with 136 who were statistically matched but did not take beta blockers. Median followup was seven years.
Results: The five-year overall survival (OS) for myeloma patients taking beta blockers was about 62%, contrasted with OS of 47% for those not taking beta blockers.
This is quite a big difference, and it's real. In a discussion with the author, she did point out that beta blockers are now being used in treatment of other cancers. I doubt we have heard the last of this one in myeloma. How does it work? How much is enough or too much? Is it really the beta blocker, or is it the underlying condition or lifestyle that prompted the doctor to prescribe the beta blocker? There is work to be done.
Caution: Beta blockers are contraindicated for some people, and anyone contemplating the addition of beta blockers to their regimen should discuss it with the prescribing doctor. I myself probably should not take them, because my resting heart rate is too low. Darn.
Link to abstract.
Tuesday, December 9, 2014
Excellent Results with Pomalyst and Velcade
ASH Monday December 8, 2014
Dr M Q Lacy, of the Mayo Clinic in Rochester, MN, presented the results of a small phase I/II study of Pomalyst with Velcade and dexamethasone (PVD) for 42 patients who had prior Revlimid but for whom Revlimid was no longer working. Many had other prior regimens as well; two thirds had a prior stem cell transplant, and more than half had prior Velcade. The results are startling.
Overall response in these relapsed and refractory patients was 81%, including 82% of the high-risk patients. A complete response (CR) was seen in 19%, including a stringent CR in two patients. At 9 months, 72% were progression free, and the median progression-free period was a year and a half.
Quoting from the abstract: "PVD is a highly attractive option in patients with relapsed and refractory MM." Here is the abstract.
Dr M Q Lacy, of the Mayo Clinic in Rochester, MN, presented the results of a small phase I/II study of Pomalyst with Velcade and dexamethasone (PVD) for 42 patients who had prior Revlimid but for whom Revlimid was no longer working. Many had other prior regimens as well; two thirds had a prior stem cell transplant, and more than half had prior Velcade. The results are startling.
Overall response in these relapsed and refractory patients was 81%, including 82% of the high-risk patients. A complete response (CR) was seen in 19%, including a stringent CR in two patients. At 9 months, 72% were progression free, and the median progression-free period was a year and a half.
Quoting from the abstract: "PVD is a highly attractive option in patients with relapsed and refractory MM." Here is the abstract.
Monday, December 8, 2014
Breaking MM News From ASH
Revlimid Does Not Increase the Risk of Second Primary Cancers for Newly-Diagnosed Patients
I know patients who say that their doctor would not recommend Revlimid for them because the doctor believed that Revlimid posed a risk of second primary malignancy (SPM), meaning some other cancer in addition to MM. Some early studies seemed to indicate that, and some doctors have taken it to heart without paying much attention to contrary data, choosing to avoid Revlimid even when it may be the most promising option.
Now an organization called "Connect MM," consisting of doctors from medical centers all over the country and even including our own Dr Brian Durie, has presented a paper based on a data base called the Multiple Myeloma Disease Registry, compiled by the National Cancer Institute. The data base provided actual clinical data from 1493 newly-diagnosed multiple myeloma (NDMM) patients, who were enrolled at 243 different US sites and observed for an average of about 2 1/2 years.
Bottom line: NDMM patients taking Revlimid have no more risk of SPM than patients taking other regimens. Here is the paper. The only significant risk factor the doctors found was "prior invasive malignancy," meaning that you are more likely to get a new cancer if you have had one before. No surprise there.
I've written about this before, arguing that the early data was misinterpreted and that Revlimid did not pose an elevated risk for SPM. This pretty much clinches it, at least for newly-diagnosed patients and it has some meaning for all of us.
I know patients who say that their doctor would not recommend Revlimid for them because the doctor believed that Revlimid posed a risk of second primary malignancy (SPM), meaning some other cancer in addition to MM. Some early studies seemed to indicate that, and some doctors have taken it to heart without paying much attention to contrary data, choosing to avoid Revlimid even when it may be the most promising option.
Now an organization called "Connect MM," consisting of doctors from medical centers all over the country and even including our own Dr Brian Durie, has presented a paper based on a data base called the Multiple Myeloma Disease Registry, compiled by the National Cancer Institute. The data base provided actual clinical data from 1493 newly-diagnosed multiple myeloma (NDMM) patients, who were enrolled at 243 different US sites and observed for an average of about 2 1/2 years.
Bottom line: NDMM patients taking Revlimid have no more risk of SPM than patients taking other regimens. Here is the paper. The only significant risk factor the doctors found was "prior invasive malignancy," meaning that you are more likely to get a new cancer if you have had one before. No surprise there.
I've written about this before, arguing that the early data was misinterpreted and that Revlimid did not pose an elevated risk for SPM. This pretty much clinches it, at least for newly-diagnosed patients and it has some meaning for all of us.
ASH Saturday, December 6, 2014
The High Cost of Innovation
ASH is the American Society of Hematology (Hematology.org), and its annual meeting is the ASH Conference, or just ASH. This year ASH is in San Francisco, and we three are among the 20,000 attendees.
A few hundred people attended a session titled "The Rising Cost of Medical Care: Understanding the Problem and Exploring Solutions" The underlying assumption is that the cost of health care is rising at an unsustainable rate, which may be true, and that a major contributor is the high cost of the new, innovative, (and often highly-effective) cancer drugs, which is debatable. First a panel of experts spoke on the issues, followed by questions from the floor.
Dr Hagop Kantarjian, from M D Anderson in Houston, was the first panelist and by far the most negative, roundly condemning the pharmaceutical companies and anyone who doesn't likewise condemn them. If it is possible to make a good case against the high prices, his talk did not do that, because it included provably incorrect information, outdated and superseded data, and assumptions that don't stand up. To his credit, he did conclude by saying that nothing would happen without intervention by the patients, which I believe is true but probably not in the way that he imagines. I learned something about M D Anderson.
In contrast Mr Alex W Bastian, of GFK Market Access, had a much more factual and reasonable presentation. Among other facts he showed data demonstrating that the cost of cancer care has remained at about 5% of total health costs in recent years. I wish I could recall more of what he said.
I asked, from a microphone on the floor, if I could tell a little of my story, as a patient, instead of just asking a question, and was given permission. I can't recall exactly what I said, and have no record of it (though there may be a video of the session somewhere), but here is what I think I said, or I now wish I had said:
I think I did say most of that, and I'm impressed that they let me say it all. It will be the highlight of ASH for me.
ASH is the American Society of Hematology (Hematology.org), and its annual meeting is the ASH Conference, or just ASH. This year ASH is in San Francisco, and we three are among the 20,000 attendees.
A few hundred people attended a session titled "The Rising Cost of Medical Care: Understanding the Problem and Exploring Solutions" The underlying assumption is that the cost of health care is rising at an unsustainable rate, which may be true, and that a major contributor is the high cost of the new, innovative, (and often highly-effective) cancer drugs, which is debatable. First a panel of experts spoke on the issues, followed by questions from the floor.
Dr Hagop Kantarjian, from M D Anderson in Houston, was the first panelist and by far the most negative, roundly condemning the pharmaceutical companies and anyone who doesn't likewise condemn them. If it is possible to make a good case against the high prices, his talk did not do that, because it included provably incorrect information, outdated and superseded data, and assumptions that don't stand up. To his credit, he did conclude by saying that nothing would happen without intervention by the patients, which I believe is true but probably not in the way that he imagines. I learned something about M D Anderson.
In contrast Mr Alex W Bastian, of GFK Market Access, had a much more factual and reasonable presentation. Among other facts he showed data demonstrating that the cost of cancer care has remained at about 5% of total health costs in recent years. I wish I could recall more of what he said.
I asked, from a microphone on the floor, if I could tell a little of my story, as a patient, instead of just asking a question, and was given permission. I can't recall exactly what I said, and have no record of it (though there may be a video of the session somewhere), but here is what I think I said, or I now wish I had said:
|
I was diagnosed with myeloma more than 11 years ago, and, with my family, have since traveled the country and run 85 marathons, living a vital and enjoyable life. I could do that because, for most of that time, I have been on an innovative new myeloma treatment called Pomalyst, just a pill that I take every night. Where did Pomalyst come from? Someone discovered that thalidomide was a useful treatment for myeloma, and the profits from Thalidomide funded the research, development, and testing of Revlimid. Then the profits from Revlimid similarly funded the development of Pomalyst. That is how our system works. As long as a pharmaceutical company can see the possibility of a good return on their investment, it will be willing to innovate and take the risk of bringing a new drug to market. If we somehow remove that incentive, innovation will go elsewhere. Common sense. An Australian doctor suggested to me that the government should be in charge of the entire process, so that it could be more fair. I doubt that it would result in more or better new drugs, and I suspect that everyone would oppose it, including the insurers, the pharmaceutical companies, and the patients. I'm sure of two things: First, the system that we have is working. It isn't perfect, but it works for me and many thousands of others who are alive and thriving today because of the new treatments. Second, the sky is not falling. Or if costs of health care are rising unsustainably, the high cost of cancer drugs is no more to blame than any other aspect of health care. I have had a wonderful life in the past 11 years. My wife and daughter appreciate it, as do my two sons, my brother and sister, and lots of nephews and nieces. Not only did I enjoy the birth of two grandsons in that time, but they got to know their grandpa. And isn't that why we're all here? |
I think I did say most of that, and I'm impressed that they let me say it all. It will be the highlight of ASH for me.
Sunday, December 7, 2014
All Is Well
In recent weeks I have been approached by some people (well, at least two) who are concerned that I have not posted on this blog since August, wondering if something is wrong. Nope - everything is fine.
We've just been very busy, and the visits to Mayo Clinic have been "steady as she goes." Stable. I have actually written, on the running blog, about the marathons that we have run in Portland, Ottawa, and Vancouver since August.
Life at home has been exceedingly busy, however, as we are in the midst of moving five miles, from our lake home in Lake Elmo to a smaller and less-demanding townhome in Stillwater, MN. Moving is a bigger job than any of us really imagined. It's not over, either, but at the moment I am taking a little time off to attend the ASH conference in San Francisco.
I do have another meeting with my Dr L on Thursday, and I may post about that, especially if there is news. Since this is a case of "no news is good news," I rather hope there is no news. Meantime, I may post about what is happening at ASH.
We've just been very busy, and the visits to Mayo Clinic have been "steady as she goes." Stable. I have actually written, on the running blog, about the marathons that we have run in Portland, Ottawa, and Vancouver since August.
Life at home has been exceedingly busy, however, as we are in the midst of moving five miles, from our lake home in Lake Elmo to a smaller and less-demanding townhome in Stillwater, MN. Moving is a bigger job than any of us really imagined. It's not over, either, but at the moment I am taking a little time off to attend the ASH conference in San Francisco.
I do have another meeting with my Dr L on Thursday, and I may post about that, especially if there is news. Since this is a case of "no news is good news," I rather hope there is no news. Meantime, I may post about what is happening at ASH.
Saturday, August 2, 2014
Better Still
Today I felt much more like myself, even went for a stroll and mowed a little bit of the lawn. Temps are normal and the pulse oximeter regularly shows numbers in the high 90's.
The pneumonia is on the run, and I won't post any more about it here unless there is a dramatic reversal.
The pneumonia is on the run, and I won't post any more about it here unless there is a dramatic reversal.
Friday, August 1, 2014
Recovering at Home
They let me out of the hospital this noon, and I like being with my loved ones. I feel a little better than yesterday, but the regimen is about the same at home as it has been in the hospital. Levaquin 750 mg once daily, probiotics to mediate the effect of the Levaquin on the stomach, lots of sleep.
I'm pretty sure that the pneumonia is viral, not bacterial, because it has responded so slowly to three different antibiotics. Nevertheless I'm taking the Levaquin, despite its risk to the Achilles tendon, in case it really is a virulent bacterium.
Right now my temp is generally around normal, which is a definite improvement, and I have some appetite. However, blood oxygen isn't much better than it was when I called 911. I have my own pulse oximeter now, which normally would have me at 98 or 99%, but now typically shows low 90's, which means that my lungs are not yet working very well.
Time will tell. More tomorrow, probably.
I'm pretty sure that the pneumonia is viral, not bacterial, because it has responded so slowly to three different antibiotics. Nevertheless I'm taking the Levaquin, despite its risk to the Achilles tendon, in case it really is a virulent bacterium.
Right now my temp is generally around normal, which is a definite improvement, and I have some appetite. However, blood oxygen isn't much better than it was when I called 911. I have my own pulse oximeter now, which normally would have me at 98 or 99%, but now typically shows low 90's, which means that my lungs are not yet working very well.
Time will tell. More tomorrow, probably.
Thursday, July 31, 2014
Feeling a Little Better
Still in the hospital. My temperature seems to have stabilized near normal, I'm coughing a little less, and blood oxygen (without supplemental oxygen) is up in the 94% range. However, pulse rate and respiration rate are unchanged and much higher than normal, so the jury is still out.
For the medically inclined: I was started on a Z-Pak (azithromycin) Monday, then in the hospital they added a cephalosporin IV antibiotic Tuesday. By today (Thursday) we didn't see much progress, so the hospital doctor finally talked me into oral Levaquin, dropping both of the others. That dose was this noon , so it's had only about nine hours to take effect, and obviously I don't know which antibiotic regimen might be working, if indeed anything really is working.
I'm nervous about Levaquin, because it's one of the drugs that can cause the Achilles tendon to rupture. If that happens my running will be dramatically curtailed (zero). However I finally agreed to Levaquin because I didn't see progress on the other meds, and I can live without running but I can't run without living.
As always, I'll know more in the morning. I'm still alive and there is a little more light at the end of the tunnel.
For the medically inclined: I was started on a Z-Pak (azithromycin) Monday, then in the hospital they added a cephalosporin IV antibiotic Tuesday. By today (Thursday) we didn't see much progress, so the hospital doctor finally talked me into oral Levaquin, dropping both of the others. That dose was this noon , so it's had only about nine hours to take effect, and obviously I don't know which antibiotic regimen might be working, if indeed anything really is working.
I'm nervous about Levaquin, because it's one of the drugs that can cause the Achilles tendon to rupture. If that happens my running will be dramatically curtailed (zero). However I finally agreed to Levaquin because I didn't see progress on the other meds, and I can live without running but I can't run without living.
As always, I'll know more in the morning. I'm still alive and there is a little more light at the end of the tunnel.
Wednesday, July 30, 2014
Pneumonia Again
July 30, 2014
CRAP! Pneumonia certainly puts a crimp in marathon training. I have a marathon coming up in early september, with a good plan for ramping up carefully to a 20-mile long run three weeks ahead. That's what you do. Setting aside the obvious life-threatening aspect of pneumonia, however, at the very least it puts a big crimp in the training plan.
I've had pneumonia five times in my life now; three times it was viral, once bacterial (last February), and now as-yet undetermined. In February the high-power IV antibiotics took effect within a day, and got me out of the hospital in two days. This time I've been in and out for two days already, and there is little evidence of improvement. I still have a little fever, low pulse oxygen level, a high pulse rate, and a high respiration rate. If it's viral instead of bacterial, prevous experience suggests that the resolution will take weeks instead of days. Grrrr.
Maybe I should just stop whining and be glad I'm still alive. Eventually I will be running again, but that's not the top priority.
I'll know more in the morning. Perhaps the pneumonia will take a sudden turn for the better, or the doctors will try something different.
CRAP! Pneumonia certainly puts a crimp in marathon training. I have a marathon coming up in early september, with a good plan for ramping up carefully to a 20-mile long run three weeks ahead. That's what you do. Setting aside the obvious life-threatening aspect of pneumonia, however, at the very least it puts a big crimp in the training plan.
I've had pneumonia five times in my life now; three times it was viral, once bacterial (last February), and now as-yet undetermined. In February the high-power IV antibiotics took effect within a day, and got me out of the hospital in two days. This time I've been in and out for two days already, and there is little evidence of improvement. I still have a little fever, low pulse oxygen level, a high pulse rate, and a high respiration rate. If it's viral instead of bacterial, prevous experience suggests that the resolution will take weeks instead of days. Grrrr.
Maybe I should just stop whining and be glad I'm still alive. Eventually I will be running again, but that's not the top priority.
I'll know more in the morning. Perhaps the pneumonia will take a sudden turn for the better, or the doctors will try something different.
Thursday, July 24, 2014
Runner's World Cover Contest
I have entered a contest by Runner's World Magazine to determine who will be on their December cover. I hope you will click here http://covercontest.runnersworld.com/entry/655/ and vote for me. You can vote every day, and that would be marvelous. The contest goes until mid-August.You can help even more by spreading the word on your own facebook or twitter page - let's make it viral! Be sure to include the magic hashtag #RWCoverContest.
Thanks!
Don W
Monday, July 14, 2014
We Miss Caroline Shallman
After a courageous three year battle with ovarian cancer, our sweet daughter-in-law Caroline died Saturday evening, July 12, 2014. Here is a link to her husband David's heartfelt goodbye message on caringBridge: http://goo.gl/SsKFF4Information about the memorial service is listed here: http://goo.gl/Khg6bo
Here is her obituary in the Minneapolis paper: http://goo.gl/OAPuDo
Monday, June 9, 2014
Medical Innovation Ecosystem
Some alarmists complain that the cost of new, innovative cancer treatments will soon bankrupt the health care system, arguing that we must find a way to limit patients' access to them. When we point out that the new treatments represent only 0.5% (one half of one percent) of health care costs, those people claim that it doesn't matter, because the expense of new treatments is increasing at an increasing rate, and we must do something.
Horsefeathers, I say. The sky is not falling. Instead, the system is working just as it should, exactly as designed. A company innovates, inventing a new treatment and, after years of trials and against tall odds, finally makes a good, healthy profit on a treatment that saves and extends lives. This provides the financial and technological footing upon which that company can further innovate, advancing medical understanding to create an even better treatment, or a new treatment for another disease. The medical innovation ecosystem also includes governments, academia, research hospitals, and more, but the pharmaceutical companies always do the heavy lifting. That's the system we have, and it's working. Let's not mess with it.
Costs of new treatments may indeed rise, but those new treatments will increasingly keep us out of hospitals and clinics, reducing those costs. Further, we will lead healthier, more productive lives, earning and spending, thereby contributing to the economy. Even more, as innovation extends our lives and improves its quality, we and our loved ones will enjoy more birthdays together, more weddings, graduations, anniversaries, more celebrations of all kinds, and lots more just plain good days. My life is worth it, not only to me but to those who love me. So is yours.
Oh but, the complainers say, there are unethical companies that are not playing fair, reaping excessive profits, or pushing expensive treatments which are no better than those they purport to replace. They imply that all of the pharmaceutical companies behave like that, but of course that is false. Indeed, some companies even promise that all patients who need their treatments will get access to them regardless of insurance status. If there are unscrupulous companies, let us find ways to "encourage" those companies to join with the ethical ones (as a lawyer I have ideas), rather than penalizing all of us patients. We have done nothing wrong and we simply want and deserve the best treatments available.
The patients' mantra is My Life Is Worth It. I wrote about this a few days ago here. We believe, above all, that we patients need a seat at the table wherever alarmists are trying to convince policymakers that the cost of cancer treatments must be reined in at the expense of patients. Here is the petition and here is where you can sign it. If you haven't, please do. Thanks!
Comments please.
Horsefeathers, I say. The sky is not falling. Instead, the system is working just as it should, exactly as designed. A company innovates, inventing a new treatment and, after years of trials and against tall odds, finally makes a good, healthy profit on a treatment that saves and extends lives. This provides the financial and technological footing upon which that company can further innovate, advancing medical understanding to create an even better treatment, or a new treatment for another disease. The medical innovation ecosystem also includes governments, academia, research hospitals, and more, but the pharmaceutical companies always do the heavy lifting. That's the system we have, and it's working. Let's not mess with it.
 |
| Deep in discussion at ASCO |
Oh but, the complainers say, there are unethical companies that are not playing fair, reaping excessive profits, or pushing expensive treatments which are no better than those they purport to replace. They imply that all of the pharmaceutical companies behave like that, but of course that is false. Indeed, some companies even promise that all patients who need their treatments will get access to them regardless of insurance status. If there are unscrupulous companies, let us find ways to "encourage" those companies to join with the ethical ones (as a lawyer I have ideas), rather than penalizing all of us patients. We have done nothing wrong and we simply want and deserve the best treatments available.
The patients' mantra is My Life Is Worth It. I wrote about this a few days ago here. We believe, above all, that we patients need a seat at the table wherever alarmists are trying to convince policymakers that the cost of cancer treatments must be reined in at the expense of patients. Here is the petition and here is where you can sign it. If you haven't, please do. Thanks!
Comments please.
Monday, June 2, 2014
My Life is Worth It
My wife, my daughter, and I were exhibitors at the annual meeting of the American Society of Clinical Oncology (ASCO) last weekend. At the invitation of ASCO, insurance companies and doctors were trying to invent a framework for limiting patients' access to the newest and most expensive cancer treatments, thereby providing those treatments only for those patients whose lives are judged worthy of them.
Unfortunately, we patients have been left out of that discussion altogether, so we were in a booth, making the point that patients should most definitely have a voice in any such discussions, and also pointing out serious errors in the "facts" put forward by the insurance companies and others. For example, people favoring mandatory limitations allege that the cost of new, innovative treatments will soon bankrupt the health care system, while the truth is that the modern cancer treatments represent only one half of one percent (0.5%) of today's healthcare costs.
At our booth we encouraged interested doctors and others to sign our petition, explaining that we want and deserve a seat at the table, to keep the facts straight and to tell our stories about the real value of our lives. Nearly everyone who heard our story signed the petition.
Pomalyst is one of the new, innovative, and targeted treatments. As part of the study I receive it free, so I don't know what it costs, but I suppose that, like most new therapies, the insurance companies would prefer not to pay for it when they can avoid it. Therefore, my interest in this issue is more than academic - I would like to be sure that I will continue to receive Pomalyst for as long as it does me any good, whether or not the study continues. In the eleven years since diagnosis two grandchildren have been born, and because of Pomalyst the older of those knows me, grandpa, which is a precious gift to both of us. Also in those eleven years I have led an active, vital life, running 82 marathons with my sweet wife and daughter, 55 of those while taking Pomalyst, the little daily miracle pill that continues to save my life.
IgG was essentially unchanged today, 1320 mg/dL, compared with 1340 last month. M-spike was up from 1.0 to 1.1 g/dL, but I think it should have been 1.1 last month anyway. Light chains behaved themselves, too, so the bottom line once again: My myeloma is still stable going into the seventh year. Yay!
We discussed three issues with Dr. YLH:
Related Links:
 |
| In the booth, I'm on the left |
At our booth we encouraged interested doctors and others to sign our petition, explaining that we want and deserve a seat at the table, to keep the facts straight and to tell our stories about the real value of our lives. Nearly everyone who heard our story signed the petition.
- Here is a copy: Petition
- If you would like to sign that petition, please follow this link: MyLifeIsWorthIt.org.
- For more information about this issue please visit: ValueOfInnovation.org.
- For more information about patient-centered health care, please visit the Center for Medicine in the Public Interest: CMPI.org
Pomalyst is one of the new, innovative, and targeted treatments. As part of the study I receive it free, so I don't know what it costs, but I suppose that, like most new therapies, the insurance companies would prefer not to pay for it when they can avoid it. Therefore, my interest in this issue is more than academic - I would like to be sure that I will continue to receive Pomalyst for as long as it does me any good, whether or not the study continues. In the eleven years since diagnosis two grandchildren have been born, and because of Pomalyst the older of those knows me, grandpa, which is a precious gift to both of us. Also in those eleven years I have led an active, vital life, running 82 marathons with my sweet wife and daughter, 55 of those while taking Pomalyst, the little daily miracle pill that continues to save my life.
IgG was essentially unchanged today, 1320 mg/dL, compared with 1340 last month. M-spike was up from 1.0 to 1.1 g/dL, but I think it should have been 1.1 last month anyway. Light chains behaved themselves, too, so the bottom line once again: My myeloma is still stable going into the seventh year. Yay!
We discussed three issues with Dr. YLH:
- Heart rate: Last month my heart rate measured 38 in the electrocardiogram and again in the doctor's office. This is about five beats slower than usual, so we decided that I would keep a log for a month. I bought a $20 pulse oximeter, which measures pulse rate as well as blood oxygen. It showed resting (easy chair) pulse rates ranging from 35 to 47, with no discernible pattern in the variation. So, for now, the answer is "it varies," and we won't worry about it.
- Thyroid: Last month TSH was 7.7 mIU/L, and this month 6.6, both slightly above the reference range. I have been taking a supplement which has seemed to help bring my thyroid into the correct range, but now it seemed to be failing. After discussion Dr YLH ordered several additional thyroid function tests on blood already drawn, and those came up normal, so I guess we won't worry about it unless I experience actual symptoms of hypothyroid.
- I asked about the new Hevylite blood tests, capable of measuring the various components of the immunoglobulins in the blood with more accuracy than the currently available tests. It sounded to me like the new tests are not yet in widespread use at Mayo Clinic. In any case, I believe that the existing tests provide enough information to track my type of myeloma.
| Test | Mar 06 | Apr 03 | May 01 | May 29 | Remarks | |||||
| M-spike g/dL | 1.1 | 1.1 | 1.0 | 1.1 | \ Tumor marker | |||||
| IgG mg/dL | 1300 | 1270 | 1340 | 1320 | / Tumor marker | |||||
| Lambda mg/dL | 3.51 | 3.26 | 3.38 | 2.59 | L free light chains | |||||
| Kappa mg/dL | 1.29 | 1.37 | 1.39 | 1.25 | K free light chains | |||||
| Ratio 0.26-1.65 | 0.37 | 0.42 | 0.41 | 0.48 | Kappa / Lambda | |||||
| Calcium mg/dL | 9.3 | 9.7 | 9.9 | 10.1 | OK | |||||
| Creatinine mg/dL | 1.0 | 1.2 | 1.1 | 1.2 | Kidney, OK | |||||
| HGB g/dL | 14.8 | 15.2 | 14.8 | 16.0 | Hemoglobin, fine | |||||
| RBC M/uL | 4.33 | 4.41 | 4.17 | 4.52 | Red cells, OK | |||||
| WBC K/uL | 4.4 | 4.3 | 3.8 | 5.2 | White cells, OK | |||||
| ANC K/uL | 1.9 | 1.9 | 1.9 | 2.6 | Neutrophils, OK |
Related Links:
| My Myeloma | A discussion of my myeloma, not very technical. | |
| My Treatment History | Not technical. | |
| My Test Charts | Graphic displays of several key test results over time. | |
| My Test Result Table | Somewhat technical. Best with a wide browser window. | |
| My Supplement Regimen | With links to where I buy them. |
Monday, May 12, 2014
Pomalyst Study Cycle 80
Thursday, May 1, 2014, Pomalyst Study Cycle 80:
IgG was higher today than it has been for years, though only slightly. Last month IgG was 1270 mg/dL, now 1340 this month. However, M-Spike was 1.1 g/dL last month, down to 1.0 this month. 1.0 is right in the middle of the range of M-Spike for the last several years. So what are we to believe? Both of those changes are probably within the accuracy limits of the test anyway, so let's call it a draw; my myeloma is still stable. For whatever it's worth, the Lambda and Kappa light chains didn't change too much either
I'm happy for another month, Pomalyst is still doing its job, 2 mg every night as a single agent. Six years and two months on that study, I love that little pill.
A month ago (end of cycle 79) we did a DEXA test, to assess bone density in the spine and hip. Bottom line: I have some osteopenia, though not osteoporosis. However, the actual bone density has not changed significantly (within the measurement error of the machine) since 2010. That's good. I do take Vitamins D3 and K2 every day, and according to some studies that may help. If you do this, though, please be aware that Vitamin K (full-spectrum, not K2) can affect clotting factors, which in turn could cause DVT's, heart attacks, and strokes. I use only K2, and I have also had clotting factors checked.
This month Dr. YLH and I discussed two other issues:
Related Links:
IgG was higher today than it has been for years, though only slightly. Last month IgG was 1270 mg/dL, now 1340 this month. However, M-Spike was 1.1 g/dL last month, down to 1.0 this month. 1.0 is right in the middle of the range of M-Spike for the last several years. So what are we to believe? Both of those changes are probably within the accuracy limits of the test anyway, so let's call it a draw; my myeloma is still stable. For whatever it's worth, the Lambda and Kappa light chains didn't change too much either
I'm happy for another month, Pomalyst is still doing its job, 2 mg every night as a single agent. Six years and two months on that study, I love that little pill.
A month ago (end of cycle 79) we did a DEXA test, to assess bone density in the spine and hip. Bottom line: I have some osteopenia, though not osteoporosis. However, the actual bone density has not changed significantly (within the measurement error of the machine) since 2010. That's good. I do take Vitamins D3 and K2 every day, and according to some studies that may help. If you do this, though, please be aware that Vitamin K (full-spectrum, not K2) can affect clotting factors, which in turn could cause DVT's, heart attacks, and strokes. I use only K2, and I have also had clotting factors checked.
This month Dr. YLH and I discussed two other issues:
- The backache that appeared during the Nashville Marathon. Dr YLH ordered an x-ray, which disclosed no myeloma lesions. All bones OK. Therefore, the problem must be muscular, and I can fix that, though maybe not in time for the next marathon. UPDATE May 12: No problem in that next marathon, Fargo, on May 10.
- A heart rate (pulse rate) of 38 on the electrocardiogram and again in the office while taking blood pressure. My HR is usually in the low 40's, typically 43, normal for me as a runner, so this is not a big departure. However it does seem to be a change, if only slight, so Dr YLH asked me to keep track of my HR for a month and I'm doing that.
| Test | Feb 06 | Mar 06 | Apr 03 | May 01 | Remarks | |||||
| M-spike g/dL | 0.9 | 1.1 | 1.1 | 1.0 | \ Tumor marker | |||||
| IgG mg/dL | 1260 | 1300 | 1270 | 1340 | / Tumor marker | |||||
| Lambda mg/dL | 2.70 | 3.51 | 3.26 | 3.38 | L free light chains | |||||
| Kappa mg/dL | 1.03 | 1.29 | 1.37 | 1.39 | K free light chains | |||||
| Ratio 0.26-1.65 | 0.28 | 0.37 | 0.42 | 0.41 | Kappa / Lambda | |||||
| Calcium mg/dL | 9.5 | 9.3 | 9.7 | 9.9 | OK | |||||
| Creatinine mg/dL | 1.3 | 1.0 | 1.2 | 1.1 | Kidney, OK | |||||
| HGB g/dL | 15.3 | 14.8 | 15.2 | 14.8 | Hemoglobin, fine | |||||
| RBC M/uL | 4.54 | 4.33 | 4.41 | 4.17 | Red cells, low | |||||
| WBC K/uL | 4.3 | 4.4 | 4.3 | 3.8 | White cells, OK | |||||
| ANC K/uL | 3.1 | 1.9 | 1.9 | 1.9 | Neutrophils, OK |
Related Links:
| My Myeloma | A discussion of my myeloma, not very technical. | |
| My Treatment History | Not technical. | |
| My Test Charts | Graphic displays of several key test results over time. | |
| My Test Result Table | Somewhat technical. Best with a wide browser window. | |
| My Supplement Regimen | With links to where I buy them. |
Tuesday, March 11, 2014
Cardiac Reserve
Thursday, March 6, 2014 Pomalyst Study Cycle 78:
My Doctor L and the crew of three CNP's were all unavailable for this visit to Mayo, so I saw Dr MG instead. In terms of the Mayo Clinic hierarchy, that's an upgrade. We had met before, but he had not seen me as a patient. We quickly agreed that the myeloms was still stable, and he in fact commented that the Pomalyst trial has been a home run for me. Indeed! Six years now, and still counting - I am so fortunate. IgG was up just slightly, but Lambda light chains are down a little, and maybe both changes are within measurement error anyway. No change. I am starting Cycle 79, continuing to hope and pray.
We discussed last month's influenza A and accompanying pneumonia at some length. He gave me a rather thorough chest exam, listening carefully to breath and heart sounds, and pronounced the breathing clear and the heartbeats strong and steady.
Three different doctors have treated or examined me now regarding that pneumonia, and all three have volunteered, without my asking, that my fitness may have played a role in my recovery. Today Dr. MG used the term "cardiopulmonary reserve," (I think that was the term), and remarked that a person without that reserve might might have recovered more slowly, if at all.
Of course there is no proof that fitness played a part, only opinions. Nevertheless I'm a true believer, and I think that my immune system may be stronger because of that fitness. To achieve that, we:
Most-Recent Test Results:
Related Links:
My Doctor L and the crew of three CNP's were all unavailable for this visit to Mayo, so I saw Dr MG instead. In terms of the Mayo Clinic hierarchy, that's an upgrade. We had met before, but he had not seen me as a patient. We quickly agreed that the myeloms was still stable, and he in fact commented that the Pomalyst trial has been a home run for me. Indeed! Six years now, and still counting - I am so fortunate. IgG was up just slightly, but Lambda light chains are down a little, and maybe both changes are within measurement error anyway. No change. I am starting Cycle 79, continuing to hope and pray.
We discussed last month's influenza A and accompanying pneumonia at some length. He gave me a rather thorough chest exam, listening carefully to breath and heart sounds, and pronounced the breathing clear and the heartbeats strong and steady.
Three different doctors have treated or examined me now regarding that pneumonia, and all three have volunteered, without my asking, that my fitness may have played a role in my recovery. Today Dr. MG used the term "cardiopulmonary reserve," (I think that was the term), and remarked that a person without that reserve might might have recovered more slowly, if at all.
Of course there is no proof that fitness played a part, only opinions. Nevertheless I'm a true believer, and I think that my immune system may be stronger because of that fitness. To achieve that, we:
- Eat the best food that we can find;
- Get plenty of vigorous exercise;
- Get enough sleep, and;
- Do our best to manage our stress.
Most-Recent Test Results:
| Test | Dec 12 | Jan 09 | Feb 06 | Mar 06 | Remarks | |||||
| M-spike g/dL | 1.1 | 1.0 | 0.9 | 1.1 | \ Tumor marker | |||||
| IgG mg/dL | 1150 | 1280 | 1260 | 1300 | / Tumor marker | |||||
| Lambda mg/dL | 2.69 | 3.64 | 2.70 | 3.51 | L free light chains | |||||
| Kappa mg/dL | 1.32 | 1.52 | 1.03 | 1.29 | K free light chains | |||||
| Ratio 0.26-1.65 | 0.49 | 0.42 | 0.28 | 0.37 | Kappa / Lambda | |||||
| Calcium mg/dL | 10.0 | 9.7 | 9.5 | 9.3 | OK | |||||
| Creatinine mg/dL | 1.2 | 1.3 | 1.3 | 1.0 | Kidney, OK | |||||
| HGB g/dL | 15.8 | 14.9 | 15.3 | 14.8 | Hemoglobin, fine | |||||
| RBC M/uL | 4.54 | 4.33 | 4.41 | 4.17 | Red cells, OK | |||||
| WBC K/uL | 3.7 | 5.1 | 4.3 | 4.4 | White cells, OK | |||||
| ANC K/uL | 1.4 | 1.7 | 3.1 | 1.9 | Neutrophils, OK |
Related Links:
| My Myeloma | A discussion of my myeloma, not very technical. | |
| My Treatment History | Not technical. | |
| My Test Charts | Graphic displays of several key test results over time. | |
| My Test Result Table | Somewhat technical. Best with a wide browser window. | |
| My Supplement Regimen | With links to where I buy them. Mostly Amazon now. |
Monday, February 17, 2014
Good News from the Doctor
No pneumonia breath sounds, normal CBC, normal energy level. Although Doctor S showed me what he thought was still a slight shadow of the pneumonia remaining on the x-ray, the radiologist’s report says "resolution of pneumonia on prior x-ray, with lungs now clear." Hoo ha! Anyway, two doctors now have told me that the x-ray results always trail the actual resolution of the pneumonia, so even if Dr. S is right and a little bit shows, the actual pneumonia is probably gone.
Dr S gave me the go-ahead to do whatever I want to do, including a marathon in two weeks, guided only by my sense of fatigue. I will still take it easy and will get as much sleep as I can from now until then, just to be sure. Maybe I’ll walk most of the marathon, who knows. They do allow up to eight hours!
Dr S gave me the go-ahead to do whatever I want to do, including a marathon in two weeks, guided only by my sense of fatigue. I will still take it easy and will get as much sleep as I can from now until then, just to be sure. Maybe I’ll walk most of the marathon, who knows. They do allow up to eight hours!
Monday, February 10, 2014
Home Again
The hospital let me go yesterday afternoon. I slept well at home last night, and I feel much better. The fever is gone, and I have an appetite, but the cough remains, with the stuffy nose, and loss of energy. I'm still on an oral antibiotic, the same type that seemed to be working so well against the pneumonia in the hospital, and will see my regular doctor in a week. Path to full recovery.
I still don't know why the hospital staff was gowning up every time they came in the room the first day. I forgot to ask the doctor. They stopped the gowns after a day, though, and on the last day most of them weren't even wearing masks.
I still don't know why the hospital staff was gowning up every time they came in the room the first day. I forgot to ask the doctor. They stopped the gowns after a day, though, and on the last day most of them weren't even wearing masks.
Saturday, February 8, 2014
Oops - Intensive Care
Saturday, February 8, 2014, Breaking News
My sweeties and I ran a lovely marathon in New Orleans last Sunday. On Monday we flew home, and by Tuesday morning I felt a scratchy throat. That came on fast, knocked me flat (weak, fever, aches, severe cough, nausea), and by Thursday it was diagnosed at Mayo as Influenza Type A. Yes, I did get the flu shot, last November. By Friday morning I was having trouble breathing and my local doc found pneumonia. He checked me into the ICU in Lakeview Hospital in Stillwater, MN.
The hospital staff treat me with respect, lots of smiles, but they put on gowns, masks, and gloves before they come into the room, and they throw those into a trash bin as they exit. Apparently they think I'm quite toxic, and I'm in a form of partial isolation. They haven't banned visitors, but you should probably stay away. My sweeties have been here, but they were asked to gown up too.
They are treating me with oxygen, oral azithromycin, IV ceftriaxone, decent food, breathing exercises, a nebulizer, and rest. I feel much better today than yesterday, with improvements in heart rate, respiration rate, blood oxygen, temperature, and every other measure. I'm still sick, but I might get home tomorrow (Sunday) to finish recovering there. Doc will tell me, and I will follow his advice - he's a good one. By the way, I have been able to continue the Pomalyst myeloma treatment throughout this ordeal.
Pomalyst Study Cycle 77
Actually I haven't posted a blog on the study since September, so this is five cycles. The myeloma has remained stable throughout, and the drug continues to work just fine, almost six years now. On Thursday M-spike was down to 0.9 g/dL, with IgG at 1260 mg/dL.
The CBC that was done Wednesday, one day after the flu started, showed that neutrophils had doubled, and Dr L commented Thursday morning that it's a sign that my body is still able to respond that well to a threat.
More on the ICU saga soon.
Subscribe to:
Posts (Atom)
