I know I promised to share pictures of my Super Bowl Sunday trip to see the new manatee sanctuary. I will, I will… Pattie has the disc I need to download the pictures. I will get to that tomorrow.
In the meantime, this Celgene/Revlimid/secondary cancer story continues to qualify as BREAKING NEWS in the myeloma world–something which normally only happens during ASH or ASCO.
A fellow blogger and multiple myeloma caregiver, Lori Puente, read my article and emailed me yesterday, asking me this:
I took a stab at this on my blog yesterday, posted late last night. Have you found anything that says long term use of Revlimid can cause secondary cancers for those of you who did not do a SCT? The study up at the Beacon seemed to be a study for those on maintenance after SCT. So I’m just wondering about that and wondering if you are wondering about it in those terms.
What a mess.
Here was my brief email response to several of Lori’s questions:
I never thought about this being a SCT/not SCT issue. Interesting. Once of my sharp criticisms of the whole research arena these days is most everything still revolves around getting a SCT right away after induction. I want to know about timing! Are they less effective if you wait? No one seems to know. So to expect data about this with or without SCT seems very improbable, wouldn’t you agree? Can I quote your reply? Thanks, Lori- Pat
Lori is a very informed advocate for myeloma patients and caregivers. Lori was kind enough to respond to my request for a quote. Apparently she had a lot to say. Let’s take a look:
I think its quite probable with all the “manage my myeloma” guys out there on longterm use of Revlimid to determine if this is a post SCT/Revlimid problem or a Revlimid problem. Like many of the study findings we are getting lately, they are a collection of data looking back in a rearview mirror at their patients’ journey’s from diagnosis to present time and outcomes. I’m hoping from this latest bit of news that ALL the big researching facilities will expend the time and money to go back into their patient pool and make some conclusions based on their vast collection of tracking information of patients still in their care or that they treated. (Sadly all the facilities lose some of this data when patients switch facilities in their search for a better outcome, but that number is possibly small enough to ignore.)
On whether it is prudent to do a SCT early or late… The main thing has been, in my non-scientific understanding, to make sure EVERY MM’er get their stem cells amply collected before they get too far into any of their treatment. Before radiation and before multiple rounds of oral chemotherapy used to get them stabilized. Once collected, they can more safely make choices in their treatment path, confident they have future options available in their fight. Having said that… many physicians thus far, are leaning toward early SCT rather than later. But I still think it is an unknown, unproven “theory” about MM treatment. In other words, the docs are still fighting about it which means regardless of which side of that argument you are on, there has not been a slam dunk study yet to say, this is what should be done and everyone has moved to that way of thinking, except for a fringe few. I think that, again, it will be a 20/20, rearview mirror, looking back an assessing those who took the long term management path before SCT and their overall survival/event free survival statistics up against those who went into SCT straight away, be it single or tandem. The frontline tandem continues to have an edge over the frontline single with the later 2nd SCT, and some would say significantly with the numbers coming out of Little Rock and Huntsman.
One of the most difficult emotional challenges with Multiple Myeloma treatment continues to be, no one knows for sure, which is the best overall path to take for the majority of patients. It is still left up to the individual patient’s ability to overcome a cancer diagnosis of this magnitude while at the same time having enough wits about them left to begin their research and discussions with multiple doctors of vastly differing views to sort out what makes sense to them for their own situation and presentation. I would encourage all newly diagnosed patients to be very selective in their 2nd and 3rd opinion choices. Too often I hear a patient going to similar big name facilities for consultations and comparison. When in reality, they need an apples to oranges opinion to truly understand the treatment dilemmas. Would you agree? There is the:
no stem cell route (management for as long as possible)
single transplant followed by 2nd transplant after relapse
alternative therapy routes (which I don’t address directly but follow with great interest and curiosity)
I think its important to better understanding the situation in treatment confusions by getting differing views vs. the same view which seems to really just be different place and different doctor bed-side manner.
I can’t disagree with much of what Lori has to say. Whatever treatment philosophy you and your doctor choose to follow, nothing beats an informed, educated patient communicating clearly with a well trained, well informed myeloma specialist.
I started to “rant” a bit about the whole delimna: How are we ever going to know which treatment plan is best? What is the best path for you or me to follow? Some real answers would be nice, don’t you think?
More about that tomorrow. If we are lucky, Lori will continue to contribute to my meandering thread as we continue to follow the Revlimid controversy and mix-in a lot of other stuff–like today!
Your homework for tomorrow: Read Lori’s post about Revlimid and secondary cancers on her blog, Riding the Wave – Multiple Myeloma.
For the record, I’m the one who has been taking Revlimid for almost four years–and I’m not that concerned. But that doesn’t mean it isn’t a big story.
Feel good and keep smiling! Pat