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Happy 4th of July! Info about amyloidosis, myeloma-related kidney failure and vitamin B-17

Home/Diagnostics, Therapy, Tips/Happy 4th of July! Info about amyloidosis, myeloma-related kidney failure and vitamin B-17

Happy 4th of July! Info about amyloidosis, myeloma-related kidney failure and vitamin B-17

It just doesn’t seem like the 4th of July today.  I understand that the majority of the country is HOT–a lot hotter than normal.

But shouldn’t the 4th mean a three day weekend?  The 4th of July on a Wednesday only messes everything up.  Which weekend is the holiday weekend?

Some businesses were closed on Monday and/or Tuesday.  Some will probably be closed on Thursday.  And how about Friday?  Or next Monday?

Listen.  I don’t begrudge anyone taking some well deserved down time.  But this uncertainty delayed the release of my new book by a week instead of a few days.  And I want to get it into my fellow patient’s and caregiver’s hands.  I think it is important.

Anyway, I thought that I would share a few myeloma related tidbits before I start hobbling around and doing some work around the house.

Did I say “myeloma related tidbits?”  Well, amyloidosis is pretty close.  Check-out this news from the University of Tennessee Research Foundation about an innovative approach to diagnosing amyloidosis:

Finding A Non-Invasive Solution For Detecting Amyloidosis

By Kimberly Hood

It’s hard to find what you can’t see, and it’s difficult to diagnose what you can’t find. This is exactly the problem Solex LLC is trying to correct in the detection of amyloidosis.

Every year 3,000 Americans are diagnosed with amyloidosis, but currently, there is no imaging technique available in the U.S. to detect the disease. Thus, there is no way for doctors to actually see the problem.

What is Amyloidosis?

Amyloidosis is a disease that occurs when abnormal proteins begin to build up in internal organs. It may occur in conjunction with many common diseases including Type 2 diabetes, myeloma, rheumatoid arthritis and Alzheimer’s. The symptoms of amyloidosis vary widely based on which organs are affected, so diagnosis is often delayed. Once diagnosed, the median survival rate of amyloidosis is only four years. Currently the only way amyloidosis may be diagnosed in the U.S. is through a biopsy. However, even with a biopsy diagnosis, doctors have no way of knowing the extent of the protein build up or the number of organs affected.

The Solution

Researchers at the University of Tennessee Medical Center have developed a synthetic peptide radiotracer for use with Positron Emission Tomography/Computed Tomography (PET/CT) imaging devices that facilitates the non-invasive, whole-body visualization of the amyloid burden in patients.

“PET imaging detects radioactive material,” Solex CEO, Jonathan Wall, Ph.D. said. “The peptide is a protein with a radioactive tag. It binds to the amyloid and gives an exact picture of where the amyloid burden is. It can be in the body for quite a while and generally no one realizes it until it has built up to the point of at least partial organ failure.”

The earlier amyloidosis is detected, the sooner doctors can begin working to prevent additional organ damage by stabilizing the function of affected organs and treating the underlying condition(s) causing the amyloid build up.

How Solex Began

While their team has been researching new imaging agents since 2008, Solex, the company based on the technology, has only been in existence for a few months.

“Solex was born out of a homework assignment and the need for clinical trials,” Wall said. “Emily Martin, my grad student, was taking Fred Tompkin’s course and one of her projects was to come back to him with something from the lab that they could turn into an entrepreneurial project.”

It was this homework assignment, coupled with the need to secure Small Business Innovation Research (SBIR) funding in order to proceed with clinical trials in humans, which led to the formation of Solex. The inventors negotiated the right to license the intellectual property from the University of Tennessee Research Foundation and the deal was finalized in December 2011, making it the first start-up company formed out of the University of Tennessee Medical Center.

Looking to the Future

Wall was quick to point out that forming the company was not their biggest obstacle, but instead, the difficult part was securing the funds necessary to advance the technology through trials required for FDA approval.

“The major hurdle is not to start the company,” Wall said. “It’s to not go bankrupt, lose your house or your kidney early on.”

Now that the company is established, their biggest concern is lining up investors and applying for SBIR grants to fund further testing. Solex has applied for SBIR Phase I funding. If everything goes according to plan, they will apply for a SBIR Phase II grant in April which would fund clinical trials in humans. After funding is acquired, Wall says that human clinical trials can be under way in as little as 12 months.

Meanwhile, Solex is working toward manufacturing staining kits to aid clinical pathology laboratories in detecting amyloid in samples. They also are conducting additional in-house trials in mice.

Solex developers from the UT Graduate School of Medicine include Jonathan Wall, Ph.D., Stephen Kennel, Ph.D., Emily Martin, B.S., Tina Richey, M.S., and Alan Stuckey, B.A., CNMT.

Pretty cool!  Back to multiple myeloma, a reader, named Sheri, emailed me yesterday looking for some help:


Being an online-friend with Ed (Patient columnist from California.  Click HERE to read his first column), I caught onto your blog.  You seem to have many, many connections in the MM world.

I was diagnosed with kidney failure last October.  When I was first told about the kidney failure, I had no symptoms at all. In fact my Dr. commented the day he drew blood how healthy I looked! I was 49 and felt pretty good for my age.  Blood work is what showed the kidney failure.   At that point, my kidneys were operating at 8%. Apparently that is too far gone to recover from.  I am doing peritoneal dialysis now.  At first the kidney biopsy results said I had Light-Chain Deposition Disease.  After meeting with the oncologist and having a BMB, I was told it was not LCDD but actually MM.    I was also started on Sub-q Velcade for 4 rounds.

I responded well to that, and we started the SCT process.  I had my SCT on Mar. 1.  My first blood work and 24-hr urine tests at +100 days showed my M-proteins dropped from .3 before SCT to only .2.  I am pretty disappointed about that.  The usual suggestion of Revlimid maintenance has been talked about, but for now I am waiting until my bone marrow biopsy in September.  I’ve read so much about Rev causing secondary cancers. (don’t need that!)  And not really prolonging your life.  (maybe by a few months).  I would prefer to not take it until a relapse because of my kidneys not processing things very well, and because of the side effects.  So, I am waiting to see if the M-proteins go up, stay the same, or (fingers-crossed) go down.

Sorry for all the back-story, but my main reason for contacting you is to see if you can put me in touch with people you might know that are in my same situation. I.E. MM, stage 3 with kidney failure.  I haven’t found anyone talking on the forums that I have come across, or any blogs that I have read where people have MM and are doing dialysis.  I read a recent post from Holt.  His situation at the beginning sounded similar to mine.  But apparently his kidneys were able to recover.  Oh how I wish that was me!  But my nephrologist says it is very unlikely.  It hasn’t happened for 6 months, so I don’t think it will now.  And because of the MM, I’m probably not going to be a transplant candidate.

Don’t get me wrong, I am not feeling sorry for myself.  Doing dialysis at home while I sleep at night isn’t that bad.  Beats the heck out of going to a center 3 times a week.  And I feel like my old self most of the time.  In fact, most days I don’t really think about being a cancer patient.  Until I look in the mirror and see no hair!

If you are able to pass my email along to anyone you know that might be in similar circumstances, I would appreciate it.  Or if you know of a blogger, or forum that has good info and good participation, please let me know.  So many of the forums I have seen don’t have much traffic.  No recent posts for many months.

Thanks again, and I enjoy reading your blog.  Good luck with your health!!

I emailed Sheri and passed-along some empathy.  I also told her I would check with my wife, Pattie–who helps operate a pair of dialysis clinics here in Florida–and see if she knew any patients that might fit-the-bill.

Pattie told me that the only patient she would have suggested also recovered enough kidney function last month to stop dialysis.  So maybe your kidneys will recover too, Sheri!  The woman Pattie described was on dialysis for at least six months, too.

Is there anyone out there that can relate to Sheri’s situation?  I’m sure she would love to hear from you.  Simply email me: and I will pass-along your contact information.

Finally, another reader, Bruce, emailed me last week about a vitamin B-17 therapy that he has been trying for a few months.  Apparently it has something to do with apricot seeds.  Anyone out there familiar with this?  I read several testimonials from cancer patients that swear by the stuff…

I love apricots!  The perfect fruit to enjoy on a 4th of July holiday–if we knew when it was!  Last weekend, the upcoming weekend…

Feel good and keep smiling, everyone!  Pat