I have already heard from several fellow myeloma patients that are willing to share their stories after reading Friday’s post:
In the meantime, I have a number of other interesting reader contributions that I would like to share with you.
The first is from a regular reader who recently underwent an allo (donor) stem cell transplant, our good friend, Mark:
What do I think? I think it’s a wonderful idea! Even though many donors are no longer subjected to the surgical removal of bone marrow, they still loose time–and experience some discomfort–during stem cell collection. Why not compensate them as a way to encourage more participation in the program?
Next, another regular reader, Holt, emailed me a short while back about the loss of a friend–and to share a great multiple myeloma awareness campaign idea:
Hello Pat,
A myeloma buddy of mine named Don died over the weekend. He was the first myeloma patient I met after I was diagnosed, and he acted as a mentor and confidant to me. He will be missed.
I hate this miserable disease!
How about this for an awareness campaign slogan: “Multiple myeloma–the deadliest cancer you’ve never heard of.”
Thanks for all you do to support us.
You bet, Holt! Sorry to hear about your good friend… Finally, a reader named Fred forwarded me this encouraging information:
The Phase I Multiple Myeloma trial using Reolysin (a viral therapy drug whis uses non-modified reovirus) has started recruitment:
| Arthur G. James Cancer Hospital and Richard J. Solove Research Institute at
Ohio State University Comprehensive Cancer Center |
|
| Columbus, Ohio, United States, 43210-1240
Here is the link to the trial on clinicaltrials.gov database http://www.clinicaltrials.gov/ct2/show/NCT01533194?term=reolysin&rank=11 |
|
Thanks, Fred! I knew that Reolysin is being used against brain tumors. Another example of “outside-the-box” thinking! I will do some follow-up on this tomorrow–along with a medical update about my meeting with Dr. Alsina at Moffitt late last week.
Feel good and keep smiling! Pat
May 7th, 2012 at 8:18 am
Hi Pat, I think it’s a great idea. One thing that myself and likely many other potential donors fear/hesitate from is the unknown on the process of both becoming a potential donor (ie harvest to type your cells), and then the actual donation if a match is found. I’ve heard of the peripheral blood stem cell apheresis method where they don’t stick you with a giant needle, but the specifics of this process aren’t always easy to find in layman’s terms.
Have you come across an honest assessment of this process that a potential donor can read/reference to others so they know exactly what they are getting into? Ignorance is probably right up there with fear of needle sticks….
May 7th, 2012 at 8:45 am
Interesting you bring that up, Justin. When I see the new public service spots recruiting donors, I feel they may be making a mistake not addressing this issue. But there is just so much you can say in 30 seconds. Have you seen any of those adds? Two points I think need to be made: Donors only participate if a match is found and cells from the marrow can be removed from a donor’s blood without using surgery. Does that work for you? I’m not involved with any of the PR work. But maybe some of us should get together and start our own awareness campaign. By the way, I’m starting to look at allos as a possible therapy for me down the road. Velcade helping to blunt affects of graft/host may help this become a safer option for myeloma patients down the road. Glad yours has turned-out so well!
May 7th, 2012 at 10:11 am
The part I found difficult to find (in admittedly little searching) is the process of becoming a potential donor (ie getting on the registry). Is this as simple as getting a normal (small) blood draw and having it sent to the appropriate place, or is more required of the donor-to-be (ie drugs needed prior to sample being taken, or actual stick to access the marrow).
That part seems to be what is glossed over in the several articles/websites I’ve read. They tend to focus on the actual harvest of cells as a donor, but not on the process prior to that point (of which for most of us will be the deciding factor or at least what gets the ball rolling so we can potentially become donors).
May 7th, 2012 at 10:17 am
OK, I did a bit more searching and came up with an answer (it really isn’t clearly stated until you start going through Faq’s). This is from the marrow.org site:
[b]
Q: How do I use the registration kit to collect a cheek cell sample?
A. When you join the registry, you will use our registration kit to give a swab of cheek cells. We will tissue type the sample you provide and use the results to match you to patients.
[/b]
So apparently it is as simple as a cheek swab and can be done from home. To me THIS should be spelled out in big bold letters right at the top of any “Join as a Donor” page! SHEESH.
May 7th, 2012 at 10:21 am
A little more reading and you can either be typed by a blood draw or cheek swab.
To top it off there is a drive locally to me TODAY or all things. Sorry for clogging up the comments with all of my replies. Please feel free to condense or delete the unimportant ones. (and apparently I need some HTML skills as I tried to bold improperly in my last comment).
Link to finding a local drive near you:
http://marrow.org/Join/Join_in_Person/Join_in_Person.aspx
May 7th, 2012 at 11:39 am
Justin S., Pat,
Thanks for putting this information up. I used to donate blood but I never knew of the Be The Match Registry. I do try and raise awareness for this cause. I know someone that raises a good amount of money for a local Childrens Hospital and he had never heard of the Registry until I got diagnosed. I know a lot of Myeloma patients view Allo as a “four letter word”, but I wish people could have seen how bad I was when I was diagnosed in Fall of 2010 and see how well I am doing just short of one year after transplant. Believe me, I am getting emotional while I am writing this just thinking about my Donor.
Mark
May 7th, 2012 at 12:38 pm
I’m glad you found the info about how tests are conducted, Justin. I thought it could be as simple as a cheek swab…
Mark and Justin-
Many thanks for your first hand contributions about allo stem cell transplants. Most myeloma patients don’t understand the process. I wouldn’t know much about it if I hadn’t met so many recipients while I was undergoing my allo. Researching my book didn’t hurt, either. But no one knows more about the process than someone who suffered through it. Please keep commenting–and feel free to submit content for me to run whenever you feel up to it…
May 8th, 2012 at 6:49 am
OK, I’m officially going to be a donor. Didn’t end up making it into the drive in person but the online sign-up was a breeze. You fill out a relatively short questionnaire (probably 20-30 questions), enter your address, and pay nothing. Kit should arrive in about 2 weeks, you simply do a cheek swab and send it back to them. 5 minutes and you’re done.
Here is the direct link to online registration and getting the kit shipped to your home:
http://marrow.org/Join/Join_Now/Join_Now.aspx
Thanks again Pat and hopefully this information can cause a mini-explosion in registration, not just for our cause but any bone marrow malady.
May 8th, 2012 at 10:40 am
Ok, remind me, Justin. You aren’t the transplant recipient? Is it your father or another family member? Sorry if I misspoke earlier…
May 8th, 2012 at 11:24 am
Justin S., Pat,
That is great Justin S signed up. I had mentioned to Pat in a private email I spoke in front of a group of 300 at a Cancer fundraiser about signing up. I do not mind speaking in front of a crowd if I am prepared, but I warned everyone I would choke up a little when I spoke about my experience. If only one person signs up for it than my speaking was worth it! Justin mentioned something that I was trying to say above. Any Myeloma patient and their family should have a good understanding what any blood cancer patient/family goes through. I would hope that a Myeloma patient that has a healthy member of their family would consider asking them to sign up. Allos are really a miraculous therapy for some patients. It does not surprise me that many Myeloma patients would not understand the Allo process since many of the “big name” Myeloma Doctors go out of their way to discuss all the potential side effects of Allo transplants while failing to discuss all the side effects never ending cycles of Revlimid/Velcade/Dex cause.
Big thanks to Pat for mentioning the Be The Match Registry and Justin for signing up.
Mark
May 8th, 2012 at 12:32 pm
Sorry Pat, I did get the feeling you mistook me for someone else. I am not a patient. I am an informed son of a patient who had an auto-SCT 3 years ago. But I’m also a parent of 2 young children and the thought of having a child with a leukemia-like disease is too difficult to imagine. What’s the potential mild/moderate side-effects worth when something like that is at stake?
May 8th, 2012 at 2:30 pm
I figured out my mistake, Justin. I have mixed you up with someone else. Thought it was a allo. Great! Become a donor. Thank you!