Have you been reading the insightful and informative comments from our readers lately?
I have been saving a lot of helpful reader suggestions to share with the rest of you. Bernie from California followed-up and sent me this email earlier this week:
In your blog on Aug.25 you mentioned The Institute for Myeloma and Bone Cancer Research in West Hollywood, where I am a patient of Dr. Berenson. He says that ALA (alpha lipoic acid) and vitamin C should not be taken on the day of treatment but are useful before and afterwards. Hope this helps.
Next, Judy from Idaho needs your help. I probably don’t write enough about the challenges faced by “high risk” multiple myeloma patients–those with chromosomal abnormalities that make their myeloma more difficult to treat.
Judy lives in rural Idaho, but sees a specialist in suburban Denver. She is still recovering from a difficult experience following her second stem cell transplant. Here is an excerpt from an email Judy sent me recently:
Hi Pat, I need your help, if possible. I have what my oncologist describes as ultra high risk IgG Kappa multiple myeloma diagnosed 24 May 2011 (age 60) with 80 percent plasma cells in my bone marrow with abnormal cytogenetic 4:14 and 1q21, with no bone lesions nor kidney disease…
What I need from you is a shout out to other high risk IgG Kappa multiple myeloma patients and what they are experiencing and how they are being treated. Could you shar my story on your web page? You can publish my email: firstname.lastname@example.org.
And I have a blog at: http://jmmultiplemyeloma.blogspot.com/
Thanks Pat, jm
Judy shares lots of detail about her difficult journey on her blog, along with some wonderful pictures of her family and the rugged landscape where she lives. Those of you who are looking for inspirational stories from older myeloma patients should definitely check-out her site, too.
It looks like she is doing well as she recovers comfortably at home. Best of luck to Judy and our other high risk readers!
Myeloma patient blogger, Gary Peterson, was one of a half dozen multiple myeloma patients and caregivers that joined me for a Cure Talk Panel discussion back in August.
The post I wrote the next day,
featured a lively, ongoing discussion about some controversial questions–and surprising answers–that myeloma and transplant specialist, Dr. Raji Vij, shared with us that day.
Gary is on a mission. He is working hard to identify myeloma treatment centers that have the best survival record.
Check-out Gary’s comment that showed-up two weeks after my post:
Pat, Hell did freeze over! You defending Total Therapy?? Pat and Mark, sorry I am getting into the discussion late, but you certainly got a great conversation going. When I saw the discussion, I went back to the source document for TT2 at the following link: http://jco.ascopubs.org/content/28/18/3023.full.pdf What I saw was that they show the death rate of 287/668 or 42% at 8 years (Figure 1 Graph A). Therefore, overall survival including all deaths is 58%.
I did not find Mark’s number of 128 or 19% of the patients dying from non myeloma causes, but based on the Social Security death rate tables one would expect the total normal death rate from all causes for the average 70 year old would be 24.1%. 70 is the average age of a myeloma patient. So the 19% seems high but is actually 5.1% better than the expected rate. The Social Security tables are at the following link: http://www.ssa.gov/oact/STATS/table4c6.html
The National Cancer Institutes SEER data would give an 8 year survival rate of 25.2%, however this is Relative Survival(which excludes non myeloma deaths). Therefore comparable data for TT2 would be 58%+19% or 77%. So TT2 data would suggest that you will be 3 times more likely to survive with the TT2 protocol than at the average SEER facility. The TT3 program has a much better survival rate. I hope this helps to provide another view of these findings.
P.S – I enjoyed working with you on the CureTalk panel.
I enjoyed the experience too, Gary! Those of you that are interested in therapy trends should go back and read some of the 22 comments that popped-up in the weeks following my initial post. Some pretty insightful stuff!
Here’s the link to the audio of the panel discussion is http://trialx.com/curetalk/2012/08/thank-you-for-your-support-myeloma-cure-panel-talk-show-team/.
And speaking of links, CLICK HERE to access Gary Peterson’s blog, which features a growing number of cancer center survival rate stats. I will be interviewing Gary and writing about his project sometime soon.
Enjoy your weekend! Tomorrow I’m going to provide you with links to a number of blog posts and columns that I have written recently for other publications–just in case you missed them. I’ve been busy!
Feel good and keep smiling! Pat