Evaluation Test Results

First, I'd like to apologize to some of you who use Internet Explorer -- there was a problem with my blog template that prevented my blog from being displayed properly on your computers. My bad. I am very sorry, and hope that we can still remain friends.

Let me cut to the chase regarding my test results. My bone marrow labs came out normal. Oh yeah! There is no evidence of any further progression with the disease, and my free light chain ratios are normal. That means I can finally claim that I have achieved a complete response to the treatment!

On a slightly more somber note, my kidneys are still pretty damaged. I've had good improvement since the spring, but the rate of healing has started to slow down. It seems I will have nephrotic syndrome for now and in the near future. There's nothing they can do about that... we'll just have to wait and see.

Where do we go from here? Well, I will continue to see my nephrologist to keep tabs on my kidneys. And of course, I'll keep up on the drugs and the restricted diet. As far as the amyloid is concerned -- I don't need to come back to Boston Medical for another evaluation until next August.

I am very happy to hear this news as the disease has been stopped in its tracks for now, although I'm a little bummed out about how my kidneys are doing. However, the important thing is that my bone marrow is functioning normally. This is quite a relief, as I don't know what I'd do if the tests came out negative. I really hope it sticks. I am positive about my future, although I am still a bit sour from the good news they gave me last year, only to find that it didn't hold.

Time will tell.

One-Year Eval: Day Three

Finally -- my three days of appointments are over with. I have given my blood, sweat and tears (literally). I didn't enjoy this visit as much, since none of my regular doctors were around this week. And to be honest, I no longer like my doing my evaluations anymore -- I try very hard to keep my mind off the experiences I had there, and every time I do go, I'm sucked back into dealing with being poked with needles, enduring the endless waiting and deciphering cryptic test results. So I am very, very glad that it is over.

We are waiting for the results from the bone marrow biopsy, which I will get on Friday afternoon. Since a negative result is a definite marker of the disease, it is difficult to jump to conclusions without these lab results. The good news is that my lambda, kappa and free light chain ratios are still normal. This, along with good results on Friday would mean that I have finally achieved a complete response to the treatment.

However, I am not taking out the champagne just yet. As if on cue, my kidneys throw a wrench into my bounty of excellent lab results. There was no improvement on the protein leakage from my kidneys (still around 8.7g/day). There are also signs that my liver and kidneys are starting to take a beating from ingesting all of this medication over a long period of time. Usable protein in my body actually decreased significantly, back to levels prior to my second stem-cell transplant. There is no explanation on why this is happening, although this could explain my increase in fatigue. Funny enough, kidney function (creatinine) is still normal.

Although my kidneys are already taking a beating, I am going to resume taking my protein drinks to compensate for the loss.

But like I said, it's too early to diagnose without the biopsy results. I will do my best to report on them (and my doctor's opinions) before the Labor Day Weekend.

One-Year Eval: Day One

The trip to my "second home" was quite routine and unremarkable. To guarantee that I could get a parking spot in the garage, I arrived at my appointment about an hour early. Since the doctors were playing golf out of the office this week, I had to meet with a lot of the "third-string" staff. Heck, my amyloid doctor for this visit looked like he just graduated from high school. (Or perhaps, I'm just getting old.)

After taking samples off all my bodily fluids, they snuck up the bone-marrow biopsy this afternoon. Usually they aren't schedule until Tuesday, but because of the low staffing, there was no choice to reschedule. Crap! Usually I bring some drugs with me to help with the anxiety, but not today. I was not prepared for getting my hip bone split in two today.

So, I bought some time, and pulled some strings and get one of the nurses to get me 1 mg of Ativan to dull my anxiety a bit. A pill under the tongue, 10 minutes of hiding from the nurse, and I was ready and relaxed for the procedure. The doctor performing the biopsy was a little clumsy, but he was excellent in the marrow extraction. The procedure was short, with very little pain. Much better than last time, and don't get me started about my first one in 2005.

Mental note for doctors: If you are in the room with a conscious patient, and make a mistake, try to refrain from saying the word, "Ooops". That is the last word the patient wishes to hear when he or she is being prodded at, is being cut open, or in any other type of uncompromising position. Might I suggest you say, "Aha!" instead? Thanks so much.

Anyway, no news at this point, as was expected. I won't hear anything until Wednesday at the earliest. The doctors are all upbeat about my status, and they don't see anything in my labs yet that would indicate a problem. One thing I was told that really bothered me was that I am probably no longer eligible for additional chemo therapies should I relapse again. The two high-dose melphalan treatments have already put me a high risk of getting leukemia, and they don't want to further increase that risk. I guess I will not have any choice but to get a clean bill of health, right? :)

Happy Anniversary To Me

Well, I knew that it was going to come sooner or later. Today, of course, is my one-year anniversary of my second stem-cell transplant. Doctors use the date you receive your stem-cells back as the metric to chart recovery and survival from this disease.

I'm afraid to say that I have been extremely disappointed in my health condition now that I've had a whole year to recover. While some of the issues I experienced during the last few days have lessened somewhat, I am still burdened with a lot of fatigue. I felt much better at my one-year mark from my first transplant, and to be honest, much better 6 months ago. I've tried a lot of different things to deal with these problems, but I have not been totally successful. Hopefully at my evaluation next week, they will be able to find an explanation.

A couple of readers wrote me regarding my schedule next week, and when I would find out any news. I will be going in for a bunch of tests from Aug 27th - Aug 29th. I'll probably get a peek at some stuff on Tuesday, some preliminary results on Wednesday, and a full result on Friday afternoon. Of course, I'll report everything as soon as I find out myself. Wish me luck. I'm sure the insurance companies are licking their lips in anticipation.

Amyloidosis Awareness Race/Walk in Carlisle, PA

Thanks to Beth for the heads up.

In memory of Chip Miller, an amyloidosis patient who passed away in 2004, the Chip Miller Amyloidosis Charitable Foundation is having a 5K Race/Walk for Amyloidosis Awareness on October 20th, 2007 in Carlisle, PA.

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Exhaustion

Next weekend marks my one-year anniversary of my second treatment. During my treatment, I knew that I would still have some health issues one year later, but I don't believe I'd have nearly as many problems I'm still experiencing today.

I'm still having some issues with my low-blood pressure, and I tend to tire out much easier that in the past. I've also started to lose a bit of weight, which is probably the last thing that I need at this point. I'm always a little jittery right before an evaluation, but this is a little too much to be the sole reason for all this fatigue.

Since I've tried everything else to get my blood pressure up, I'm doing the last thing that could possibly help -- getting off of the ACE-inhibitor I started about two months ago. I'm hoping that it's the reason for all of this fatigue. My edema has been behaving a little better now, especially with this cooler weather, so I'm comfortable getting off of it to give my body a breather.

Back On Track, Sort Of

I just wanted to report to the people that read this blog (all three of you, hehe) that I am alive and well after returning from a fun trip in Toronto over the weekend. It was my first visit in five years, and it was great to see my friend Jason (yes, that Jason) and his girlfriend Elsie. They showered me with gifts and paid my way the whole time, so I've amassed a guilt bubble the size of a third-world country.

Blood pressure is a little better, although I think that it has subsided a bit now that I've been more sedentary since coming back home, which has been worrisome. I'm thinking about restarting my exercise routines once the weather cools off a bit. I've also stopped taking the protein drinks during this hot weather -- perhaps I should restart them as well.

I'll leave you with a picture from the Chinese Lantern Festival, which is currently taking place in Toronto. Toronto's a great city, and if I knew how to properly order a coffee from a Tim Horton's, I wouldn't mind living up there for a bit.

Emergency Pit Stop

I keep on forgetting to post this handy FLC diagnostic reference that Muriel Finkel of Amyloidosis Support Groups sent out a few weeks ago. It will probably make no sense to the layperson, but I figured I'd post it to anyone that was interested in it. It is a nice cross-reference to compare your free light chain levels. This document comes to you at no charge; the medical degree to understand it all, well, that costs a little bit more.

I'm afraid to say that I have had a bad patch of days recently, mostly due to some blood pressure issues. When my blood pressure is low, I am tired, a little disoriented, get non-specific chest pains, and generally feel like shit.

On Tuesday, I took a trip to NYC on business, and ended up overexerting myself. I woke up Wednesday not a happy camper. To add to the mess, my GI tract got upset with something, and I began to dehydrate. Needless to say, the combination of the exhaustion and dehydration made my blood pressure plummet. It was about at the level of a small rodent.

After several hours of feeling like death incarnate, I decided to go to the local hospital to get checked out. Better to be safe than sorry in these matters. I really like the hospital in my town -- it is literally a stone's throw away, and due to the light traffic it gets, you tend to be taken care of very well. They did a number of tests (along with a chest X-ray) and fed me some fluids to get my electrolytes back in balance. After a long while, the lab results came back. The doctor said that the results were "excellent", and sent me on my way.

Today was a little better, but a still a little rough. I'm going on a trip tomorrow, so I'll be doing everything I can to make sure that this doesn't happen again.

My Amyloid Doc Put Out Another Article

Durable remissions and prolonged survival for patients with immunoglobulin light chain amyloidosis (AL), a plasma cell dyscrasia, have been achieved with high-dose chemotherapy and autologous stem cell transplantation, investigators here reported.

The investigators said that "the fact that the outcome is so strongly dependent upon achieving a hematologic complete response indicates that treatment response plays an important role in long-term survival."

You want numbers and statistics? This article, written by my amyloid doctor over at Boston Medical, has a ton of them.

Aggressive Treatment Boosts Survival in AL Amyloidosis - Breaking Medical News + CME Teaching Brief® - MedPage Today

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Evaluation Delay

I'm not sure if there's a golf tournament on the week of August 20th, but I was contacted this afternoon to reschedule my one-year evaluation checkup, as most of the doctors will be out of the office that week.

I have been rescheduled for the following week: the week of August 27th. That means that I won't know anything until the 29th, and should have some prognosis on the afternoon of August 31st.

I'm actually not thinking that much about my upcoming visit, but when I do, it does weigh heavy on my mind, since I will discover if my battle with this disease has come to an end for now, or if it has only just begun.

Chlorella

I've been conversing with a friend and fellow patient about albumin, and how our protein leakage also causes a lack of albumin in our system, which leads to a number of bad things. Most apparent of the symptoms of not having albumin in our systems is edema, as it is the albumin that acts as a chaperone for fluid that passes through our blood. When there is no albumin, the fluid goes crazy -- sort of a physiological version of "Girls Gone Wild".

One of things we can do to deal with about our hypoalbuminaemia is to eat foods with albumin, so that we can make up for all of albumin our kidneys are leaking away. You can find albumin in egg whites, meats, and some plants.

One of the things recommended for raising albumin production is chlorella, which is algae found in freshwater. You can actually get chlorella tablets at your local health food store (warning: they are not cheap). As you can read in my last link, chlorella has a number of benefits, even for people in good health. I tried them for a time, but I ended up quitting due to their cost, and, well, they taste quite awful. But if they can help heal my body and put it back into equilibrium, then that's a sacrifice that I'll make.