Thursday, November 27, 2008

No Easy Answers

First, a Happy Thanksgiving to all. This year our family is joined by my mother, her husband, Bob, my brother Tom and his daughter, Gina, for the celebration. We will also be joined by a few friends and there will be 14 at our table. Susan has pulled this dinner together in the wake of a difficult week last week. She continues to amaze me with her endless energy. We will gather round the table this year and once again give thanks for all of you, your love and support, and the blessings of another year past. Thank you.

And now for the news on the cancer front. I met with Rifkin yesterday to review the Arkansas approach and to wrest from him his views of Dr. Barlogie. We decided I might do better by myself rather than bringing the troops (Susan, Catherine and/or Julia). A good strategy, but given the tenor of the meeting I do wish Susan or the girls had been there, rather than having to rely upon my impressions. The meeting was casual, informative, and nonconfrontational. First, Barlogie has yet to make a recommendation, as he awaits info and data from the bone marrow biopsies. He sent a letter to Rifkin and as Rifkin said, this is the most noncommittal he has ever seen Barlogie. He suspects he is a bit perplexed as I am doing quite well despite 3 1/2 years of treatment, but still have evidence of the disease. I confronted Rifkin as to why he obviously disagreed with Barlogie's very aggressive approach and in essence he thinks the overall chemo regime is very very hard on people, can lead to long term permanent impairments, and has not yet proven to extend life any more than a less aggressive approach. Admittedly he gets more people into remission, but Rifkin said the studies are too young to yet establish this approach extends survival. Rifkin does believe a heavier chemo regime is probably in order for me, primarily because of the resistance I now have to velcade, but would probably approach it less dogmatically, i.e., if I experience too many side effects he would likely moderate the doses rather than push me on through the cycle. He also thinks at least one more transplant is in order, and maybe a second with one of my brother's stem cells. But, he seems most interested in hearing what Barlogie's recommendation is and going from there. He wisely noted that if a cure had been established, they would all be using the same approach. But since there is no cure, there is no agreement on the most effective treatment. Rifkin is willing to work in any capacity I want, whether it be as primary doctor, consulting doctor, secondary to Barlogie or whatever. In fact he said if I decided I wanted to go to Arkansas and then came back, I would always be welcome back as his patient. So, the meeting took the edge off and we will know, probably no later than December 12th, what Barlogie recommends. I will then meet with Rifkin and decide how to proceed. For now I am on a drug holiday, and happy for that.

Best to all of you and Happy Thanksgiving.


Sunday, November 23, 2008

Little Rock Notes

We arrived home last night (Saturday) after 5 pretty busy days of testing in the Myeloma Institute at University of Arkansas. We thought we would be finished at the conclusion of our meeting with Dr. Bart Barlogie on Thursday afternoon, but during the meeting he ordered 3 more tests (2 more bone marrow biopsies and a PET scan), all compliments of the the Institute, since their cost was not covered by insurance. I had a complete workup from xrays, MRIs, bone scans, blood work, biopsies, etc. etc. My myeloma is not running rampant, but it is also not inactive. Catherine and Julia had fixed us dinner (mainly Julia) and we had a nice family dinner and discussed the heavy topic of Dad's likely treatment options (see below). It felt so good to be home and to be able to start to process some very complicated information.

Barlogie will be meeting with his team of doctors this coming week and we expect he will have a recommendation at that time as to treatment based upon the test results. We are scheduled for a revisit on December 12, although they were clear that if he thinks I should come back sooner, they will let me know. Suffice to say he does not mess around with this disease. He has been studying, researching and treating exlcusively myeloma for the past 20 years and I am confident he is the best myeloma specialist in the country, if not the world. He also has a reputation for being very aggressive with his treatment. Some in the medical community are critical of this, (probably including Dr. Rifkin) although one can't argue with his success. He achieves remission in a large percentage of his patients with his aggressive treatment. I think that the patient's "quality of life" is compromised during the treatment phase (which likely will include some heavy chemo, followed by one if not two transplants, and then another course of chemo, followed by maintenance chemo), but if remission can be achieved it seems to me like it's worth the sacrifice. Whether I will continue to treat here in Denver, or have to move to Little Rock is unknown at this point. My decision is complicated by the fact that I have a two well respected doctors and their egos have some play in all of this. I, on the other hand, just want to do what is best for my life. They may well have differing opinions on that.

And to end on a lighter note:
Barlogie referred to me early on as "chubby"; to which I replied: "better than mildy obese."
Susan has to return to Little Rock because all of her new friends will want to see her. She makes friends quicker than anyone I know.
The people of Little Rock are the nicest people I have ever met. They go out of their way to help you, to greet you, to put a smile on your face. This trait, in combination with Susan's ability to make friends, bodes well for any future visits.
If you're looking for a job opportunity, open a car rental shop in Little Rock. There were no rental cars available until Wednesday. None in the entire city.

We continue to be grateful for all of your love and support. I will post another note once I know what Barlogie is recommending.

Friday, November 14, 2008

And We're Off to Arkansas

We finalized our arrangements today to go to Arkansas for a second opinion regarding the path forward. We see Rifkin late Monday and head straight for the airport to go to Little Rock. I check in at the Myeloma Institute at 7 a.m. Tuesday morning to begin a series of tests for 2 days, after which I will have a consult with Dr. Barlogie, one of the world's leading experts in treating myeloma. Of course, Susan will be there to keep me in a positive frame of mind. She's the best! I couldn't imagine being on this journey without her. This contact with the Myeloma Institute was facilitated by Dr. Yosef Refaeli from Denver's National Jewish Hospital. The whole "adventure" makes me quite nervous, probably because I am fearful of what I might be told about my disease or future treatment. Not that I am unaware of the seriousness of this nastiness, but after some time of managing to keep it under control, I have become accustomed to blocking out those negative thoughts. I will, nonetheless, have put together a long list of questions for both of my doctors. And in 10 days I will report the answers to you.
Much love to you all.

Tuesday, November 11, 2008

Arkansas Connections

As I considered the narrowing options for my next chemo regime, I decided that seeking a second opinion might not be a bad idea. Fortunately, last month I met a research biologist at National Jewish Hospital here in Denver. He graciously agreed to meet me for lunch a few weeks ago, and even more graciously offered to put me in contact with the chief doctor at the Myeloma Institute at the University of Arkansas, which is the world's largest myeloma treatment center. The Institute was founded and funded by Sam Walton, of WalMart fame. Mr. Walton, it seems, had myeloma also. Anyway, I am now in communication with Dr. Barlogie's chief nurse and hope to have either a telephone or in person consult with him about his recommendations for my future treatment. I will then discuss those with Rifkin and we'll make a decision about how to proceed. I am scheduled to see Rifkin on Monday and he will have his recommendation for me at that time. I had hoped to have completed the consult with Dr. Barlogie by then, but things are proceeding a little more slowly on that front.

I've been off chemo for 3 weeks now and it is great. Finally, after 14 months of the steroid roller coaster and the velcade fatigue, I feel like I'm clearing out. It's a short respite, but most welcome.

I'll post something as soon as something develops.
Love to all,