Wednesday, November 24, 2010

Tandem transplants proven to create longer life expectancy!!!!

In this study from the Myeloma Beacon, "long-term follow-up results indicate double transplantation is superior to single transplantation for Myeloma."

Some highlights:

* Significantly better 10-year overall and event free survival

* 12 percent of patients still in remission at a median follow-up time of 13.6 years

* Study shows that after 11 years, rates of recurrence were much less likely to relapse later

* Study included alkalyting agents (nasty chemo) but no novel agents (thalidomid, revlimid, velcade)

ALL of this supports BB, UAMS, and Total Therapy.  BB refuses to put his patients into a blind trial because he thinks it would be unethical not to use the regimen he feels has the best chance of saving their life in order to prove a point.  To my knowledge, this is the first published data of such a trial, and the first document outside of Arkansas that supports the tandem transplant concept.

That makes this extroardinarily important.

EVERYTHING BB was doing when I was diagnosed -- Relvimid in newly diagnosed patients, Velcade in newly diagnosed patients, maintenance therapy -- has subsequently been accepted by the establishment who at the time of my diagnosis said BB was crazy to do it.  I've written here that tandem transplants would be the last domino to fall.  But now, this data proves him to be right about that as well.

I don't normally directly proselytize beyond telling my own story, and to be clear there are some for whom Total Therapy is not the right choice, and there are about 20% of patients who don't respond to any treatment.  

But I **URGE** anybody newly diagnosed with this disease to explore the aggressive option.  It may just save your life.  There is a lot of literature and blogosphere commentary about being conservative -- I am one loud voice to the contrary.  Explore your options -- and before considering something like JB's protocol, ask him how many of his patients are still alive after 10 years of treatment.  Better still, ask ANY doctor with whom you are talking.

BB will tell the exact many people are alive after any given number of years.  Beware any doctor that won't share that information, or sees too few Myeloma patients to keep track of it.

Okay, that's enough.  What GREAT news for all of us, though!!!!!   :)

Full text of the article copied below.

Long-Term Follow-Up Results Indicate Double Transplantation Is Superior To Single Transplantation For Myeloma

4 CommentsBy Jessica Langholtz and Julie Shilane
Published: Nov 23, 2010 5:52 pm
Long-Term Follow-Up Results Indicate Double Transplantation Is Superior To Single Transplantation For Myeloma
Long-term follow-up results from a clinical trial show that multiple myeloma patients who underwent two stem cell transplants remained in remission longer and also survived longer than patients who underwent one transplant. These findings are updated results from a previously published study comparing single versus double transplantation.
Multiple myeloma patients are commonly treated with stem cell transplantation. Several studies have shown a survival benefit to having a second transplant a couple of months after the first. However long-term follow-up results are necessary to confirm this.
Patients were recruited for the study between 1992 and 1997, and the initial findings were published in 2001. The current report includes updated results of the trial after following the patients for a median of 13.6 years.
The clinical trial evaluated the outcome of 90 patients (46 newly diagnosed and 44 pre-treated) who were planning on undergoing double (also known as tandem) stem cell transplantation using their own stem cells.
Of the 90 patients, 49 patients actually underwent the second transplantation.
Stem cells for the first transplant were collected prior to a preparative conditioning regimen of high-dosemelphalan (Alkeran) and then transplanted back after the melphalan treatment.
Stem cells for a second transplant are often collected at the same time as the stem cells for the first transplant, but some myeloma cells remain in the bone marrow and can be collected along with the stem cells. In an attempt to increase the efficacy of the regimen, this study collected stem cells for the second transplant several months after the first transplant.
Patients who were eligible for the second transplant received conditioning therapy with a combination of busulfan and cyclophosphamide (Cytoxan) and then received transplanted cells that were collected after their first transplant.
At the time of the trial, novel agents, such as thalidomide (Thalomid), Revlimid (lenalidomide), and Velcade(bortezomib), had not yet been introduced for the treatment of myeloma.
In both the original and updated reports, patients undergoing tandem transplantation experienced a median overall survival of 84 months. However, long-term follow-up showed that overall survival of patients who underwent single transplantation decreased from 49 months in the initial analysis to 44 months in the updated report.
Initially, the data showed that patients receiving tandem transplants were likely to have better survival than patients receiving a single transplant. However, only in the follow-up results was the difference between the two groups significant, demonstrating the importance of long-term follow-up of clinical trial participants.
Patients who received tandem transplants also achieved significantly better 10-year overall and event-free survival than patients who received a single transplant (34 percent versus 18 percent for overall survival, and 18 percent versus 0 percent for event-free survival). This data was similar to previous studies comparing single and double transplants.
The researchers noted that at the time of the follow-up analysis, 12 percent of patients who underwent tandem transplantation were still in remission. They also noted a “plateau” in remission rates after 130 months (almost 11 years), meaning that patients who were still in remission at that time were much less likely to relapse later. They attributed this long-term remission to the high-intensity of the regimen, not the use of stem cells collected after the first transplant.
The researchers concluded that the new long-term follow-up data confirm the promising results published in the original report. Additionally, the long-term results show that tandem transplantation is superior to single transplantation.
In their evaluation of the updated follow-up data, the researchers cautioned that it is important to consider a possible selection bias in the trial. Patients with a good prognosis may have been more likely to undergo a second transplant. The primary reasons for not undergoing the second transplant were insufficient stem cell harvest (23 percent, likely due to harvesting after high-dose melphalan), toxicity of previous treatment (9 percent), and progressive disease (8 percent).
For more information, please read the follow-up report in the Journal of Clinical Oncology (pdf) or the initial results published in Bone Marrow Transplantation.

Thanksgiving and a Forgotten Anniversary

Thursday, November 13, 2008.  This was the date that I was diagnosed with Multiple Myeloma, and told that median life expectancy was five years.

It's a date that one might thing I would not let pass unnoticed.  I knew that it was sometime in November, but I didn't recall the exact date.  And I was going to make a blog post about it, but didn't get around to it -- been working too much lately.

At any rate, it came and went.  I don't live my life as though I have Myeloma.  I take pills at night, they have some side effects that I'll be glad to be rid of eventually.  I get Velcade once a week -- I've grown to view these visits as respites from the frantic pace of my job.  I go to Arkansas once every four months now, for a series of tests which generally bore me to tears, and at which I now fully expect to see no return of the cancer.  And I wait, patiently but with growing confidence and conviction, that in two years time I will be off meds and will be told, definitively, by the doctor who sees more Myeloma than anybody in the world that it will not be coming back.

And so...I give Thanks tomorrow to the doctor who saved my life,  my family and friends that make it worth saving, and everybody in the Myeloma community -- doctors, nurses, patients, caregivers and the precious followers of this blog who sustained me at my lowest and still inspire me with their own stories and their care for mine.

Warm wishes to all of you for this holiday.



Thursday, November 18, 2010

Crampwatch 2010 continues...

Haven't had one of these in a long time.  Night before last I had a pretty sharp on that wasn't nearly as strong as others because it barely woke me from sleep...I couldn't determine if it was in the bottom of my foot or my right calf.  It lasted maybe 15 seconds and I was able to return to sleep.  My calf was sore when I woke later but it went away pretty quickly.

I missed two nights of magnesium -- last Friday and Saturday.  They are the only nights I have missed since upping my dose to 1000mg per day.  And this is also the first cramp I have experienced since that time.  It could be coincidence, or could be a delayed effect...I will hopefully not experience another so I cannot guarantee I'll have enough data to figure out the correlation with precision!!

Was awoken last night from heartburn, despite taking Pantoprazole before bed the last two nights.  This seems to be getting a bit worse over time, or at least bouncing around.  Dex is the culprit.  Sigh.

Tuesday, November 16, 2010

Where has the time gone?!?!? Highlights from the last month...

Hello folks.  Honestly I'm not sure what's happened to the time but I'm alive and well!

Some observations from the last month:

* All markers still look good as can be.  Platelets are a little low, howevering around 110, and didn't recover when I took the week off Revlimid but sometimes that lags a bit so we'll see how they look today.  Platelet suppression is the biggest hematologist issue in my maintenance.  I will -- I promise -- be putting a graph up showing platelets over time.  Anyhow, in contrast, WBC has been a little higher, around 4-5 which is in the low end of normal but definitely normal.  I would say this could be in response to fighting something off, except my CRP is very low indeed.  Curious, but I ain't gonna knock it.

* In related news, I have gone a long stretch now without bronchitis or any cold / cough.  This is remarkable and much appreciated!  My little boy has had a nasty cough for about a month and somehow I've not contracted it.  Could it be my immune system is righting itself, even through the haze of immunosuppressant medication that I'm on?  I looked back to check the other Ig figures -- IgG remains where it should be and has been which is to say mildly suppressed in the 550-650 range.  IgA was obliterated during primary therapy and now sits at very low normal around 100, but while I first thought this might have been a slow recovery that now gave me the stuff to fight off colds, it has really been bouncing around in the 90-100 range for the past year.  IgM, likewise, was obliterated during therapy and remains quite low (below the point at which they begin measuring, which is 26) although it has peeked up into the range of measurement from time to time.  So it's not these markers.  I don't get T-cell or CD cell information other than in Arkansas, so perhaps I'll see what that looks like when I return there.

* I had a terrific brunch with a fellow MM traveler, EW, in Los Angeles a couple of weeks ago.  He's been kind enough to comment here from time to time and has followed the blog for a while.  He's an excellent guy and has a very interesting story, involving two doctors mentioned here from time.  One of them, of whom I am not a fan (Dr. JB), is on the opposite end of the spectrum from Dr. BB.  He thinks transplants are a waste of time.  He pursues what I will call a trial and error approach to different combinations of drugs.  Personally, I think his approach is dead wrong, but he is a doctor and I'm not, and as I have remarked to a friend that is less of a fan of transplants than I, if Dr. JB finds a cure, I will be in the front row cheering him on.  Anyhow, upon his initial consult, Dr. JB looks at EW and says "ehhhh....I give you three to five years."  What a jerk!!!  Thankfully, EW went for a slightly stronger approach, even though he has not undertaken a transplant.  And it's more than three to five years later, I believe, and EW feels great and has the disease under control.  So...take that, Dr. JB!

* I was saddened to read in the MMRF's latest blurb that "Myeloma is incurable."  With respect to Kathy, this is factually incorrect, a slap in the face to the work being done at Arkansas and elsewhere, insulting to those of us who have undergone aggressive treatment, and dangerously mis-informative to newly diagnosed patients.  It would be accurate to say there is no definitive cure, or to suggest that there is no treatment that can cure everybody, or even that there are controversial treatments which might represent a cure for some patients but not all.  However it is simply factually incorrect to state it the way they have.  I understand their need to maintain urgency in what is a fundraising newsletter, essentially, but it is depressing nonetheless!

* Lastly, I am pleased to note that by sticking to drinking as much water as possible, I have now lost 1 stone 6!