To start, I would like to apologize to a number of readers that never saw their comments published. I normally receive an email whenever someone comments on any post–or so I thought. But I learned today that there were 27 comments from the past week or so waiting to be approved by “the Administrator.” HEY! That’s me! Why the system never alerted me to these lost voices is unclear. Rest-assured I won’t make this mistake again. I want your comments to be “heard!”
I believe that the sharing of information between myeloma patients and caregivers is one of the most important–if not the most important–ways to help all of us keep our heads above water.
Keeping that in mind, I strongly recommend that you revisit comments made following past posts after a day or two. You can simply click-on the comment link or scroll down to the bottom of the post.
And if you like, you can always adjust your settings so that you receive an email whenever a new comment is posted.
Why is following our comment thread so important? Check-out these helpful and informative posts left by several of our regulars this past week:
I think Dr. Giralt makes a great point in the paper I highlighted above:
“A 55-year-old today has an expected life-span of 30 years. To say to a patient you have a seven-year lifespan, which is twice as high as it would have been 20 years ago, is still not that good.”’
There have been major strides in the last decade with Velcade and Revlimid, but I still think we are way behind other blood cancers. For example, Dr. Anderson thinks the results with carfilzomib/Revlimid/DEX are “exciting” due to a 42% sCR rate after EIGHT MONTHS. By comparison, 70-80% of younger patients diagnosed with AML (acute myeloid leukemia) go into remission within a few WEEKS after diagnosis. Their induction (which normally takes a week) is very intensive and requires a hospital stay, but I wish myeloma patients had an option that had a 70-80% chance of remission within weeks. By myeloma therapy standards those rates are good, but not compared to other blood cancers.
I think some Doctors reluctance to discuss an early allo is based on their opinion that 10 years of survival is “good enough” for a young patient and that we should be happy with long cycles of drugs with a QOL that is “not too bad” in their opinion. This young patient is not very impressed with the progress made in the non-allo setting with respect to survival and QOL. On the other hand, I am very impressed with the strides made in allogeneic transplantation.
Mark is our resident allogeneic (donor) stem cell transplant expert. He underwent a successful preemptive allo several years ago and is doing very well. His take-away message: Allos should be presented as an option to newly diagnosed patients up-front, when they are more likely to work.
Next, how about Danny’s nutritional comments following my post about the dangers of consuming too much aspartame for myeloma survivors:
Yep. I was aware of this study for the last several weeks and I had already warned of aspartame in a previous column last January based on early data shared by Dr. Berenson.
Acesulfame-K and saccharine are also suspect, by the way. However, Stevia seems safe.
My idea: if you need sweet, go for a little honey or sugar. Just seek moderation.
And a bit later along the comment thread:
I want to emphasize Pat’s last point.
Its important to realize that a whole variety of chemicals other than aspartame may be associated with the likelihood to develop myeloma.
However, it is important to distinguish that we do not KNOW that they cause myeloma– only that there is a statistical association there. Same for acrylamides in the diet, asparagine or perhaps butter and cream. Beyond diet there may also be potential risk, in the exposure to such varied things as pesticides for orchard workers, solvents in the oil industry or even ionizing radiation. The list goes on.
I think its helpful to emphasize that while we may suspect that some of these factors may be associated with the chance to develop the disease, we have no idea whether they are causal.
That said, I think it wise for MGUS or myeloma patients to avoid or minimize those things.
Brian shared this link-back to an article CNN ran about marathoner and myeloma survivor Don Wright:
Here’s a link to the CNN article on Don
Next time you see a growing comment thread below a headline, click on it. The collective wisdom of my readers is a powerful thing.
Feel good and keep smiling! Pat