I’ve got lots of myeloma related news to pass along. Let’s start with some disappointing news from the Leukemia and Lymphoma Society (LLS).
A loyal reader, Linda, emailed me recently, opening this way:
At my LLS blood cancer meeting last week, a representative from the LLS was there and talked about new directions and fewer donations. Sounds like difficult times for non-profits. She said the $100 per year given to blood cancer patients has been suspended as of February of this year…
How unfortunate! When I was diagnosed back in the spring of 2007, the yearly, no-strings-attached stipend amount was a whopping $500. It dropped over the years to what was the current $100. It wasn’t a lot, but I remember feeling a bit less despondent after hearing I was eligible to receive it from the social worker at Mayo Clinic. The money helped. But more importantly, it left me feeling like I wasn’t alone and someone cared. If I hear that they’ve accepting applications again I’ll let you know.
Dr. Kumar started out giving an ASCO review, but I quickly derailed him into talking about how and why allo transplants are making a comeback in myeloma patients. He discussed the topic for ten minutes or so. I learned a lot.
Like so many others, Dr. Kumar is pinning his hopes on new immunotherapies like daratumumab and SAR. He also spends time debunking the theory that continual maintenance therapy is always best for a patient. As always, I was impressed. Dr. Kumar is a very bright guy!
Finally, a support group leader from a small southern Minnesota town, sent this email:
My heart goes out to you as you maneuver the roads of getting a new chemo drug.
However, this post today is one of the most important you’ve EVER posted. I often speak to myeloma patients, that do not have a myeloma specialist. The first thing, I tell them is that they need to see a myeloma specialist. Not all oncologists can be an expert on every cancer and myeloma changes so fast it, can be hard to keep up with. I mean changing fast in the patient and new discoveries on the drug front.
Recent contacts I’ve had has been, one patient, is taking Doxil, cause they weren’t aware that there was financial help available for Revlimid, another patient feels that he is at the end, because he feels bad and doesn’t realize the roller coaster of feeling bad and recovery, back and forth on this disease, that he can take chemo and get out of his rut, I’m telling him not to give up. Others feel they’ve taken a chemo and are now permanently o.k. Help!
That’s why your blog is so invaluable to myeloma patients, keep up the good work!
Thanks for the kind words! She was responding to a post I wrote June 19th:
She emails me often with questions from group members and I help whenever I can. Apparently this paragraph from my post hit close to home:
Still think a patient doesn’t need to understand his or her options? Someone in a mid-sized town that’s not seeing a specialist–or taking part in his or her therapy decisions–may not even suspect that there’s more than one direction to go. Their doctor will simply tell them that he or she is prescribing a new drug or drugs. With no medical standard of care, which drug(s) will they choose? I’m not comfortable with a medical oncologist using their smart phone to skim through a couple of therapy reviews, then prescribing a drug combination that they may have no experience administering…
So many from online communities know so much about myeloma related therapies and diagnostics. But that constitutes a miniscule 3-4% of patients and caregivers living with multiple myeloma. What about the rest?
Sure, a much larger percentage may spend some time online early on, but then do very little follow up or self education. Another 1% attend support groups that aren’t also very active online. That’s it! What about the other 95%? I use the example of “Someone in a mid-sized town.” What about rural Americans? I correspond regularly with a caregiver from rural Nebraska. The closest medical oncologist is hours away. And I believe he and his wife travel over six hours to get to Mayo Clinic to see a specialist. I’m betting if a neighbor is diagnosed, they’re likely to skip the Mayo clinic part and stick with that medical oncologist–or possibly receive treatment from the local small town doctor.
And there’s no guarantee that someone will see a specialist, even if one is available nearby. I often hear, “I’m comfortable with my doctor.” Or, “I don’t need a specialist.” From members of my support group north of Tampa; not exactly stuck out in the sticks!
Then there are our international readers. They turn to us because with a few exceptions, new myeloma drugs are going to be tested and approved here first. How many of those hundreds of thousands are seeing someone that would qualify as a myeloma specialist here in the States?
The online myeloma community has come a long way the past six years. But there’s much more work to do. And I plan to hang around long enough to do my fair share!
Feel good and keep smiling! Pat