Tuesday, December 9, 2014

Beta Blockers May Improve Myeloma Survival

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.

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.

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.

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 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.

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.

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.


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.


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.

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/SsKFF4

Information 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.

Deep in discussion at ASCO
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.