Sneak Preview

When I went to Patient's Day earlier this month, I was able to speak with a number of staff who took care of me during my treatment(s). I spoke with my amyloid doctor, who complimented me on my healthy appearance, and wanted me to do a favor for her: to come in and do an early 24-hour urine test. She was genuinely curious to get the first results from my treatment, and didn't want to wait until my 3-month evaluation in mid-December.

To hear that my doctor was as curious as I about my recovery such a nice feeling. What a heart-warmer. And having the advantage of living in the area, I was able to do it without a problem. I drove down and dropped off my "little orange jug" on November 14th.

The thing with finding out lab results is that generally, the doctor will not call you with your results if they are good or, at the very least, not horrible enough to require immediate attention. Why is this? Who knows. Perhaps its a matter of triage -- the doctors don't have the time to call every patient and tell him their labs look normal. Or maybe they don't want to answer questions about the results. Still, the wait is very frustrating. Anyone who has been there knows that the tension can get high, and waiting for important blood test results can unerve you like a college senior who is awaiting the results of his SATs. So I tell other patients who are pulling out their hair waiting for the doctor to call back with results from a test to not worry about it. If there was a problem, you would have known about it already. All of the lab procedures these days flag any wacky results and send them to the doctor immediately.

This is just a stock photo, and not my actual lab results. Damn, I wish my cholesterol was only 210.

So when I didn't get the results from the lab I dropped off, I didn't worry about it. "If there was a problem," I said to myself, "they would have called me by now." But for some reason, that explanation didn't settle right with me. While it may be true that doctors only call you if your routine labs were bad, what about when the lab taken was not mandatory? The November lab wasn't required by protocol -- more of a "just for shits and giggles" kind of inquiry. Would my doctor share that information with me -- especially if it was good news? If it was bad news, would they not tell me, considering that I was coming in a couple of weeks? Now I wasn't so sure. Thinking about it, I started pulling my hair out. (Actually, since I don't have much hair it was more like pulling scalp and peach fuzz.)

Finally, after nearly two weeks of waiting, I dropped an e-mail to my contact at BUSM asking about the labs. Of course, I didn't have the cojones to say that I was terrified that I didn't hear from anyone and I was worried sick and desparately wanted to know the results, but instead dropped a gentle "reminder" them of the lab and to verify that they were able to process the sample.

A couple hours later I got an e-mail from my doctor.

Tony,
We did receive your 24 hour urine collection. Protein has decreased to 10 g/day and lambda free light chain is not present anymore. Therefore, it seems that you are in remission at this point. We will see how long it lasts for! Hope you had a great thanksgiving.

It's funny. I get an e-mail stating that I am currently in remission from this awful disease, and my first thought was, "I still am leaking 10 grams of protein?!?" Shows where my priorities lie. Or how stubborn I truly am.

Of course, there's no pulling out the red carpet for me yet. This is all preliminary and too early to celebrate, but it's a start. And I'm sure that if the labs do change for the worse, the doctors will let me know.

Amy Gets Air Time

As with any rare disease, the biggest challenge is getting the word out to people (especially doctors) what the disease is and how to test for it and treat it. For the most part, we have been unsuccessful at getting news articles or health segments on TV warning people about the disease. Some people sarcastically say that it would have to take the illness of a famous person in order to bring it into the public eye.

At the Amyloid Patient's Day in Boston earlier this month, Lois & Richard Singer made an announcement that they were going to use the mention of amyloidosis on FOX's series House as a way to get a medical segment aired about the disease on a local TV station. They made several phone calls with news afflilates in their area just to squeeze in a small piece about the HOUSE episode, and the disease in real life.

It appears that they came through! Lisa Cooney Carter, wife of the late Lance Carter, has posted a link to the small medical segment on FOX News 5 in New York. You can watch it here.

Day 89: Thanks Giving

We've finally made it through another month. I've come to believe that if "time flies while you are having fun", then there's a corollary of "time lags when your bored out of your #@$! mind". The last few months have felt like an eternity, like watching paint dry in slooooooooow motion. Even this far out from the treatment, the recovery does not speed up. The body takes it's own sweet time to recuperate.

There's nothing to do but stare in the mirror and wait for the hair to come back in. I have instituted a "Follicle Watch" program to keep me better informed of any hair growth activity in the area. There have been some pop ups on above my ears, so I increased the watch level to "Elevated". All I need is a little time, and I'll be growing an afro in no time.

Next steps? Well, at the three-month mark, I get to stop taking another drug -- Protonix, which was being used to protect my stomach during the chemotherapy. That brings the drug count down to two - the Lasix and the Midodrine. This will be the lowest number of drugs I've been on since I checked into BUMC last May. I'm sure that although CVS is not probably happy losing my business, my liver is ever so thankful that I'm taking it easy on the pills.

On December 11th, I check into BUSM for my 3-month evaluation. Like my 3-month checkup last year, this is a bunch of follow-up tests to see how the body has reacted to the transplant. It's very important to realize that most of the test results should be taken with a grain of salt, as the body is still not at equilibrium from the high-dose chemo. However, it will be good to compare some of my numbers from last year. I know that there has been some improvement with the kidneys, and it will be nice to have the labs to prove it.

I've also decided that my body is ready to attempt to return back to work full-time at the beginning of December, a full ten weeks sooner than after my first transplant. I'm at a point where my body really isn't going to become any more conditioned until I get into the rigors of working and moving the entire day. There's a big jump from laying on the couch to making a daily commute into work, and usually the body does not tolerate it very well. Still, I need to put my best foot forward and see what I can do, so I can truly gauge my recovery progress.

Thanksgiving is tomorrow, and I want to close by giving a quick thanks to everyone who has been a part of the journey with me over the last 18 months. To the doctors and nurses over at BUMC, for without the proper care and diagnoses I would not be here today. I'm very lucky to have been living in Boston near the best doctors in the world for this disease. A thank you to all of my family and friends who have supported me throughout this -- I know it hasn't been a pretty ride, but it has been much more manageable with your letters, cards, e-mails and Best Buy gift certificates. And finally to all of my readers (that's right, I'm talking about you!) Your comments have been so uplifting and helpful. I read every one of them and while I am unable to respond to each one of them, they do put a smile on my face. Happy a Happy Bird Day!

Day + 82: Home Strech

All that lack of writing means one thing - that this is one of the more boring parts of the recovery process, when you have recovered everything except your stamina (and your hair), and you're just waiting for the body to build up to a level where you can manage going back to work and pulling a full-time schedule. Here's a tip: it's very important to constantly increase activity to prepare yourself for the rat-race, or you will fall on your ass once you start. You cannot lay around for a couple of months and be expected to all of a sudden function with full energy through a work day. It just won't happen.

Although this recovery seems like forever, it has been very good compared to after my first transplant, where I was out of work for nearly five months. I've been out of work this time for nearly three and considering coming back; so that's progress! I hope to return to work by the end of the month.

Talking about hair, I am trimming my goatee on a daily basis, but I'll be damned if I can get any hair to grow on the sides of my head. I've had better results with Chia Pets.

I had some friends come in from out of town this weekend, and I spent a lot of time walking around non-stop for hours on end. I was surprised that although I was very beat at the end of the day, I was able to endure without getting sick.

New Treatments

At Patient's Day last week, there was a lot of optimism regarding the significant number of new treatments that were in the clinical trial phase for treating both primary and secondary amyloidosis. A good number of the newer drugs are based on studies that are so new, they haven't been reported in a medical journal.

Most of these treatments aim to do so by reducing the rogue light chain levels in the body back down to normal levels. Some of the treatments are chemotherapy-based, known and used in other diseases such as multiple myeloma; others are working off of new theories, and deal with the protein cells directly.


Here's a slide from the presentation last week showing how scientist believe amyloids (and resulting fibrils) from in the body. You see those small arrows on the diagram? Those show the different processes which scientists are directly attacking to stop the process. As you can see, some are trying to stop amyloid fibrils from forming, while others are working directly with RNA to prevent an inbalance of light chains from ever forming in the first place.

For those who couldn't read the slide, here are some of the notable clinical trials in process:

Phase III

• MRA (Humanized anti-IL-6 receptor MAb)
• Genasense (Bcl-2 antisense)

Phase II

• Actimid (TM) (IMiD)
• CC1I006 (IMiD)
• Aplidin (R) (apoptosis inducer)
• Atlizimab (Humanized anti-IL-6 receptor MAb)
• AP23573 (anti-angiogenic)
• Bevacizumab (Humanized anti-VEGF receptor)
• Deptipeptide (rapamicin an.)
• Mylovenge (Idiotypic vaccine)
• Anakinra (IL-1R antagonist)
• 2-methoxyestradiol (antiangiogenic)
• RAD001 (mTOR inhibitor)
• SU5416 (antiangiogenic)
• Temodar (R) (chemotherapy)
• Arsenic trioxide (multiple act.)
• Vatalanib (antiangiogenic)
• ZD6474 (antiangiogenic)
• Tipifarnib (farnesyl transferase inhibitor)

Phase I/II

• AMG 162 (Ab anti-RANKL)
• Atiprimod (anto-angiogenic)
• Gallium maltolate (chemotherapy)
• GCS-100 (chemotherapy)
• Samarium153 EDTMP (Skeletal-targeting)
• GVAX(R) (myeloma vaccine)
• SU6568 (anti-angiogenic)
• GX 15-070 (apoptosis induc.)
• Alvocidib (chemotherapy)
• CP-571 (MoAb anti-IGF-1)

Oh my hands hurt from typing that in. Anyway, there was a lot of praise being given to bortezomib (Velcade), which is now being used on AL patients without multiple myeloma. It is in clinical trials internationally, and many patients are positively reacting to it. I don't have any more information other than that, but I thought that I should pass it on.

Patient Profile: John Moore

This is the first of a number of "patient profiles" -- short stories about other amyloidosis patients that I have come into contact since I began treatment for this disease in the summer of 2005.

The first patient that I came into contact on a regular basis was Jack Moore, a CPA from Sacramento, CA. I had the pleasure of meeting Jack at Boston Medical in July 2005 while waiting for our appointments. Both of us were admitted for high-dose melphalan / stem-cell transplants. Throughout the treatment, we would always go into each other's recovery rooms, to check up on each other. John was two weeks ahead of me, so it was great seeing how he was doing, as it gave me an idea of what to expect in my recovery. I really grew to really like Jack due to his amazing energy and infectious personality throughout his treatment. Even as his kidneys began to fail and being forced into dialysis, his attitude was always optimistic.

Well, that optimism paid off -- several months after his transplant, the damage to his kidney began to reverse, and he was removed off of dialysis. Today, he is doing great, and not only has he had a complete response to the treatment, his kidneys are now functioning normally again!

Pictured (left to right): William Hale, Jack Moore, yours truly

Jack is yet another "success story", and an inspiration for amyloidosis patients everywhere. You can read the diary he wrote during his treatment here.

Patient's Day 2006 Recap

On Saturday, November 4th, the Boston Medical School of Medicine held a Amyloidosis Patient's Day. This event was open to the general public, and coincided with the Amyloidosis Symposium, a "doctor's only" event also being held in the area. I was amazed at the number and variety of people who came to the event. In all there were approximently 100 patients, caregivers and doctors from all over the world who came to meet and learn the latest news on this disease. The guest list was a veritable "who's who" of the worldwide amyloidosis community.


After a brief registration period and breakfast, the morning consisted of a number of presentations. The mood was upbeat, and we were presented with a ton of information on new treatment methods and approaches to stopping progression of the disease. Specifically, the presentation topics and speakers consisted of the following:

• Translational medicine in systemic amyloidoses (Dr. Giampaoalo Merlini)
• New developments in diagnostics and monitoring therapeutic effects (Dr. Raymond Comenzo)
• A patient's experience and viewpoint (Isabelle Lousada)
• Organ system disease and supportive care (Dr. Laura Dember)

I've scanned in the presentation materials referred to at the conference, which you can find here. Warning: This document is in PDF format and is quite big (over 6 megabytes in size). It is unannotated and may contain doctor-lingo and multi-syllable words that you may not understand!

Once the presentations were finished, we took a break for lunch, since all of the long presentations and big words made us very hungry. This was a great opportunity to grab a sandwich (or two) and mingle with other attendees about the disease and how it affected their lives. It was a pleasure to finally meet other patients and caregivers -- many which I had been only communicated with until now over the phone or via e-mail.

Once lunch was over, we broke into a number of different groups, each discussing a number of issues about the disease, such as treatment options and quality of life issues. This was another excellent opportunity to share experiences with other patients and caregivers.

Finally, all of the conference participants were treated to a sneak preview of the new care facility across the street at Boston Medical Center, which is located in the newly-erected Moakley Building. It is very nice and modern, with a lot more open spaces, larger waiting rooms, and private treatment rooms for transplant patients!


It was a long, tiring day, but it was worth it. It was uplifting to see so many other people who have been struck by this awful disease overcome come and beat it completely. It was also a pleasure to meet Dr. Merlini and Dr. Comenzo, both who are pioneers in the field. They are well known for finding new approaches in tackling this disease, and for successfully treating patients where others have failed. I had a great time at Patient's Day, and I can't wait for the next one.

Patients Day

Yesterday was Patients Day at Boston University School of Medicine, which coincided with the Educational Symposium on Amyloidosis. I spent the entire day there, talking to doctors and other patients. I'm still a little wiped out for a full report, but I promise a full recap in the next day or two.

More Pineapples, Please?

As I was googling around cyberspace this morning, I came across a "Q&A" discussion about amyloidosis by a Dr. James Heffley. I like his analogy of the amyloid deposits which grow during the progression of the disease:

...Imagine a factory producing a product made of nonbiodegradable plastic. A small percentage of these plastic products are sure to be defective, but there is no easy way to do away with them. This is no problem if there are only a few of them. But if a flaw develops in the machinery and a lot of defective plastic products are made with no place to store them, the defective products will accumulate and interfere with the production of all other products...

Then, out nowhere, he began to list of the "natural" ways that scienists are learning to handle (or even treat) the disease:

...Destruction of amyloid by very high doses of vitamin C in combination with copper seems to work in animal experiments and may at least prevent amyloidosis from worsening. Low levels of glutathione, another major antioxidant, may also be associated with amyloidosis. Although human studies have not been conducted to evaluate glutathione supplementation for amyloidosis, some clinicians recommend 500 mg two or three times a day to try to prevent the disease.

Bromelain, an enzyme derived from pineapple, may help break down amyloid deposits in kidney tissue; this is suggested by a laboratory study performed on tissue samples from the kidney of one person with a family history of amyloidosis. This preliminary finding does not indicate how this information will translate to treatment or prevention of amyloidosis for people in general...

...Although only a "test tube" experiment, production of insoluble amyloid was reduced in the presence of melatonin, a brain hormone that diminishes with age but that can be easily and safely supplemented.

Although amyloid is an abnormal protein, the amount of protein you eat plays no known role in the development of the disease. Dietary choices and supplements that increase your intake of omega-3 fatty acids theoretically would help to prevent amyloidosis...

Wow. That's the first I've heard of these studies. Of course, after a few-clicks in my favorite search engine, I've found that this is somewhat well known, and this information has been around for at least a couple of years.

The correlation between bromelain and kidney amyloid deposit reduction is interesting to me, as I have quite a lot of amyloid deposits there. You can even get bromelain in a pill at your local health-store, which would be awfully convienent.

I will bring these findings to the Patient's Day event on Saturday and run it by some of the doctors I meet.

Lance Carter: When we last left our hero...

Early this morning, our friend Lance passed away. My heart goes out to Lisa and their families. I am currently without words, so I will leave it at that.

Lance, know you will be missed, and that one day, we will find a cure for this terrible disease that took you from this world.