As I sit down to write this post, my emotional tank is on “empty.” The last two days have been manic and draining.
I have received a number of supportive calls and emails. I have also received a few from disappointed readers who are anticipating I may choose to go ahead and get an autologous stem cell transplant (ASCT) or(SCT).
One step at a time. After leaving Dr. Alsina’s office at Moffitt Cancer Center Monday morning, I hurried off to the infusion center for my quarterly, two hour Aredia infusion. Aredia is an IV bisphosphonate, similar to Zometa. It is a bit less expensive and the bisphosphonate drug of choice among many of the myeloma experts at Mayo Clinic. I started using Aredia while under their care–once a month for the first two years– and every three months since then. This follows Dr. Durie’s and the IMF’s recommended guidelines for ongoing bisphosphonate use, reinforced by recent studies showing a similar drug, Zometa, helps inhibit the growth of lesions in bones as well as helping repair them after the damage is done.
Next stop: A previously unscheduled appointment with on of only a dozen hematological radiation oncology experts in the country, Dr. Michael Tomblyn.
I was very impressed with Dr. Tomblyn. It turns out we both recently moved from a similar part of the country. I was surprised to learn Dr. Tomblyn had completed his residency at the University of Minnesota in the Twin Cities. That’s only an hour from my former home in Wisconsin, just minutes from the Minnesota border.
Dr. Tomblyn did have a chance to review my PET scan results. He agreed with Dr. Alsina that radiation therapy for my right hip would be a good idea.
Since Moffitt is more than an hour from my home north of Tampa in Weeki Wachee, Dr. Tomblyn suggested I use a local radiation oncologist and receive my treatment–ten days of radiation–closer to home.
I am still deciding whether to do that, or use Moffitt and Dr. Tomblyn. But like he said, my largest lesion isn’t near any vital organs. He felt any board certified radiation oncologist could easily handle this task.
Everyone agreed the other seven or eight “hot spots,” or lesions which showed up on my scan were not large enough to attack with radiation.
Which brings me back to my meeting with Dr. Alsina. Monday I wrote:
“I would like to pause here and interject that now is the time I would recommend my fellow multiple myeloma patient readers consider seeking a second opinion. I am at a treatment crossroads: Do we simply adjust my anti-myeloma drug mix and try to control my myeloma, or do I discuss the pros and cons of undergoing a single or tandem stem cell transplant.”
Getting a second opinion before making any major therapy change is always a good idea.
But I knew this day was coming. In effect, I had been getting “second opinions” from myeloma experts I interviewed as a freelance medical writer for over a year.
No matter what the topic, I had taken every opportunity to pick-up a bit of free medical counsel from these experts. Dr. Durie with the IMF, Dr. Vij with the University of Washington and Dr. Anderson with Dana-Farber and Harvard Medical School, all agree that stem cell transplants are still an important standard of care for a relatively young, otherwise patient like me.
Specifically, Dr. Vij and Dr. Alsina both feel strongly that I shouldn’t wait any longer than after first relapse to get my SCT.
As recently as yesterday, Dr. Anderson stated that “the current standard of care for multiple myeloma patients continues to include stem cell transplantation for those who are physically eligible for the process.” in an interview he did with the Myeloma Beacon Tuesday.
Dr. Alsina believes if I delay my transplant much longer, I run the risk of crossing the line where my transplant becomes what is called “salvage therapy.” “Patients don’t do well when they wait to transplant as a last resort.” Dr. Alsina said.
It is difficult to make a therapy decision like this one based on data alone. The challenge is that I am living and operating in uncharted/unresearched territory. I can’t find any research to support or contradict Dr. Alsina’s assertions.
For example, here is a link to a Mayo Clinic study about using ASCT as a salvage therapy. The only problem is the research deals with using a second ASCT as salvage therapy, not a first.
Why? Since SCT’s are the standard of care for the majority of newly diagnosed patients–best I can tell–no one has researched using a SCT for the first time after a patient has exhausted all of their novel therapy options first.
When does using novel therapy agents after relapse constitute salvage therapy? There is no consensus.
What about using tandem transplants after relapse? Again, very little research data. UAMS uses tandems in their Total Therapy program. But after relapse? There just isn’t a lot of data. And even if there was, it is hard enough deciding whether to finally get one SCT, let alone two!
Are your eyes glazing over yet? I must admit there is a certain feeling comfort–getting lost among all of these research studies, facts and figures.
But I’m not going to find the answers I seek hidden deep within a data base of past ASH or ASCO studies. None of this is going to make my decision any easier in the end.
My wife, Pattie, has not been supportive of the transplant option in the past. Last evening during our daily walk, I mentioned I was thinking about calling some of my former myeloma docs at Mayo Clinic to see what they thought. Her response: “Why?”
Pattie already knows transplantation is the right thing for me to do now. She knows my old docs would agree with our decision. After all, they lobbied I go to transplant following my first round of induction therapy.
As scary and inconvenient as the prospect of having someone destroy all of your bone marrow with toxic poison is, the love of my life and my long term caregiver, isn’t fighting the idea of a transplant anymore.
The idea here is to get your tumor load down as low as you can before SCT. Radiation should help. Using a combination of Revlimid, Velcade and dexamethasone (RVD) should finish the job.
NOTE: You see this acronym written as VRD or RVD. If Millennium (Velcade) payed for the study, it is written VRD. If Celgene (Revlimid) payed for the study it is written RVD.
Dr. Alsina feels strongly now is the time to transplant. My relaspe is mild. There is enough bone involvement all know something needs to be done. If it works, staying on RVD, and/or using another maintenance combo–and waiting to transplant–is always an option.
But my health is good. I was able to achieve a relatively long (over two years) complete response (CR) using Revlimid and dex alone. Statistically, this means I have a very good chance my transplant will work for at least that long. Why not try and gain a few drug free years following a hopefully successful SCT?
Every myeloma expert I know (with the exception of Dr. Berenson in LA who is rarely if ever uses a transplant) would agree after first relapse is a good time to transplant.
So do I. Pattie and I have made our decision. Looks like there is a stem cell transplant in my future–possibly as early as the second week in June.
Tomorrow let’s talk about whether I should use maintenance therapy after SCT.
Feel good and keep smiling! Pat