UPDATE:4/12/19 Part II

Okay, nothing new here (since the 4/12/19 post), just more (much more) details for those who are interested. This is intended to give the “background story” and to answer some of the questions I’ve been asked.

Chemotherapy is Working!

Once again I will explain that my cancer (Multiple Myeloma) is a cancer of the part of the bone marrow that makes proteins. Of the many proteins produced, I have a very specific flaw in just one. It is called the IgG Lambda Light Chain. Because my bone marrow started to spew out huge amounts of this protein, probably sometime in September or October (I was completely unaware) it filled my kidneys and caused them to fail. There is no cancer in my kidneys, but simply they could not handle the volume of protein that my cancer cells (in the plasma) was producing. A normal person would have less than 24 mg of this protein per liter of blood. When I was diagnosed, I had 2658 mg of this protein per liter. The kidneys can handle the 24 mgs or less. We don’t know how much protein starts to do damage, so the goal is trying to get the protein as low as possible.

The graph below shows how my protein levels have been dropping through plasma exchange in January (where the part of my blood that has the protein is removed and replaced with an artificial plasma products), and through chemotherapy. So, in conclusion, we know the chemo is working. If it was not working, I would be in big trouble.

We will continue chemo until we get the lowest level we can, and until I can do something that has a better long-term outcome such as a stem cell transplant.

Lambda Light Chain Graph

What is My Chemo Program?

The chemotherapy that I am doing is standard for my disease and with someone in renal failure. I take pills of dexamethasone (a steroid) at 40 MG on Mondays. No one knows how this large dose of steroids work in Multiple Myeloma, but it seems to make the other chemo drugs work better. I also take a chemo drug called Cytoxan on Mondays. This drug stops the rapid cell division which is seen in most cancers. Then on Mondays and Thursdays I have an injection of a Multiple Myeloma-specific chemo called  Velcade. Velcade is very expensive (I think $3-4,000 per injection) and the most important chemo drug. It works in a complex way where it caused the bad protein to build up inside the cancer cell (it blocks and enzyme which the cell uses to break down the protein) so the cancer cell fills with the protein until it literally ruptures and dies.

Since February, the side effects of the chemo were getting worse and worse. I was doing okay on Monday when I did three drugs. But when I did Velcade alone on Thursday, I would have a severe flu-like reaction. The problem was, this flu went from lasting to one day to lasting a week, crossing into my next treatment, so I always felt bad.

My oncologist suggested that I take the dexamethasone again on Thursdays. He wanted me to take 40 MG (which would guarantee that I would not sleep for 2 days). I decided to take 20 MGs . . . and it worked! I have had only minimal side effects for the last two rounds of chemo with this program.

My Kidneys are Improving but Very Slowly

About 30% of Multiple Myeloma patients start out like me by having no symptoms until their kidneys fail. Of those who kidneys fail, somewhere (depending on the study you look at) between 30% and 80% eventually regain enough kidney function to get off dialysis.  For those who kidneys don’t recover, the prognosis is grim with a much lower life-expectancy (sometime months). I would not be a candidate for a kidney transplant because I have cancer. I may not be a candidate for stem cell transplant because I have renal failure. A stem cell transplant (where they harvest my own stem cells, burn out all my bone marrow and give me back my stem cells, which create new, mostly healthy bone marrow) could give me ten years of life.

So, it is an understatement to say that getting my renal function back is important. I have prayed my heart out over this and had many crying sessions when they have not improved as much as I wanted. I also hate having this painful tube in my chest and spending the hours on a dialysis machine each week.

My kidneys are doing fine managing my fluids (I pee like a racehorse and have no swelling). My own kidneys also are doing a pretty good job in managing my electrolytes. If I ate a large amount of potassium (4 + bananas) or calcium (5+ Tums) those electrolytes will get too high (a normal set of kidneys would handle that easily). So, I do have to watch my diet, but not too carefully. However, what my kidneys are not doing well is filtering out waste products such as creatinine. For that reason I must be on dialysis to survive.

One night, when I was high on my steroids, I spent several hours going back through my fourteen renal function tests. I looked at the rise of creatinine between dialysis sessions. Immediately after dialysis my creatinine gets down to 2 mg per 100 ml of blood. Normal is below 1.2 mg per 100 ml of blood. But my creatinine rises during the hours that my kidneys are functioning on their own. In order to get off dialysis, there can be no rise in the toxin when my kidneys are function on their own.

I went back over two and a half months and counted the hours between my previous dialysis and my lab draws to check my kidney function. I was able to crate a algorithm that shows precisely where I am at and where I need to be (which is 0 ). Below is the table to show this trend. You will see a slow drop, but then a plateau over the past two weeks. I will update this graph as I have more lab tests. Ignore the numbers to the left. It is not “creatinine level” but an algorithm, which I created and understand.

Grap of Kidney Function

Please keep praying for my kidneys to recover. I will accept a miracle or just a natural improvement. It would mean so much to have my kidneys again.

My Neurological Symptoms are Driving me Crazy!

The only symptom I had before I was diagnosed was neurological. These symptoms, were assumed to be caused by living in renal failure for some period of time. Sometime in December I started to have muscle twitches. I have had them before, but these started to get worse. I had several twitches going on almost all the time. The twitches were so bad that I started to assume I had ALS. I made an appointment with my doctor to discuss these and a new, unexplained nerve root pain from my neck  and down my right arm. He did, rightly so, focus on the neck pain and when I went to get a CT of my neck, I had to get labs. This was on January 11th. The labs showed that I was in serious shape with renal failure and electrolytes through the roof. This started the events that led to going to ICU and eventual  the diagnosis of Multiple Myeloma.

But during this time in the hospital, and after dialysis, these twitches slightly improved. My kidney doctor assumed that these symptoms were from my renal failure, which are common, but usually not this severe. I assumed that they would go away once I got the toxins down in my blood through dialysis. They have not. After some initial improvement, they have not changed.

So now, I have 2-3 places twitching all the time, on a good day. On a bad day, I have 10+. It is from my tongue down to the arches in my feet. It is driving me crazy! It is hard to sleep. Also, if I cough or sneeze, I instantly have 20+ areas of my abdomen twitching or go into a full spasm that last up to 1 minute. If I go from squatting to standing, the same thing happens in my pelvis area. No, this is not painful (except for the full cramps), but I am so disappointed that this is not getting better.

I’ve spoken to my kidney doctor, my cancer doctor, and a neurologist. They each shrug their shoulders as having never seen twitching this so bad in renal disease. They have no solutions. I have read every study in the world that talks about neurological symptoms of renal failure. Per the suggestion of one study, I did start gabapentin to see if it would  help. The first day went great but then, since then, it is not so clear.

I pray constantly that this would go away. I fear it will get worse and if it does, I will be tempted to blow my brains out. Not really. No, I would probably use pills.

The Future

I am disappointed that my referral to a Multiple Myeloma specialist at the University of Washington was lost by my doctor and after two months my future is still not clear. This, and the fact that each time I go to get labs and the lab orders are wrong, is very frustrating. If having cancer is not bad enough, having to constantly watch the orders for labs, referrals, and even the chemo (all of which have been wrong) is daunting. I cannot imagine how a non-medical person would navigate this maze. They would not know that a red and purple top tube are not the right tubes to measure the cancer protein in your blood, or that an IV chemo drug was not done, and should have been.

But before I digress more, I will say that we now have a referral sent to UW, but have not heard back from them. There, the Multiple Myeloma specialist will make sure that I’m on the right program and will start the evaluation for a stem cell transplant. My future will be in their hand.

Our Great Trip

Because I am on dialysis, I cannot get further than 72 hours from my dialysis machine. Also, my insurance will not allow me to get my dialysis anywhere else. They assume that I am so sick that I should not be traveling.

The other limitation is chemotherapy. It takes up the other days of the week. However, once a month I do have a break from chemo. Denise and I decided, that since I cannot get on a plane, that we will do road trips once a month when I’m off chemo. We just got back last night from our first trip. It was a 400 mile trip, up through White Rock and Vancouver, British Columbia, then over the Canadian Cascades, down through eastern Washington and back over our Cascades.

Denise was recently in a minor car accident, where she was rear-ended and her car may be totaled. I decided to buy a fun car, a high performance, small convertible. It looks new but it is 13 years old and thus affordable.

Our trip was fantastic! We pretended everything was normal. We made an agreement that I would not talk about cancer or my symptoms and she would not talk about work.  She is not a fan of convertibles (I’ve always driven Jeeps with rag tops and kept them down all summer). But, she allowed me to put the top down and leave it down. This was through two rainstorms and two light snowstorms in the mountains. I think she really enjoyed it.

Once again, I typed this from a dialysis chair and please forgive the typos. I will try not to write so much in the future.







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