My Trip to Mayo

I want to give you a quick update on my visit to Mayo last week, and follow-up with my local cancer doc this week. I hardly recognized the place and could barely find my way around without all of the snow and ice. I am usually there in the winter.

It was a hard and fast trip - only 40 hours from the time I left the house in Bedford, flew to Minneapolis, drove to Rochester, spent the night there and then 10 hours at the Mayo Clinic, drove back to Minneapolis, flew back to DFW, and then arrived back home (thanks loads to Carol for trips to and from the airport). Salient items learned: 

• It is time to restart chemotherapy. The cancer has increased from 1.0 to 2.0 in the two months since I discontinued chemo. My doc at Mayo is the head of the hematology department there, and she spent a lot of time discussing various chemo options. I met with my local cancer doc yesterday to decide which treatment option to take. He asked what I wanted to do, I told him, and he agreed and ordered the prescription. I will go back on to strong doses of my previous cancer med daily, with a good helping of steroids on the side.
• The cancer has morphed from the easy-going, laid back cancer of years past into a more aggressive form of its prior self. I will likely need to remain on some form of chemo for the rest of my life, instead of the lengthy breaks I have enjoyed over the past years. I thank the Great Sustainer of the Universe, however, that there are medicines to combat this. I am grateful for the two months I have had off, and grateful for the meds to fight it.
• The skeletal frame is still intact. Other than the bone that the tumor ate away last year, ten years now and the disease has not attacked the frame. It has a tendency to create micro lesions through the bone but has not done so.
• The tumor does not appear to be re-forming. Pain that I have been experiencing that led me to believe the tumor might be coming back is from a series of parallel fractures (called insufficiency fractures) in the tailbone area that is growing back after the tumor destroyed it last year. These should be healed up and all better in 2-3 months.
• While there are a number of medicines available to me now, a very promising possibility a few (maybe 3) years down the road is Car-T cells. It is a medicine that acts like a transplant and may be able to take me off chemo. It has shown incredible success in trials. There is a trial coming up this fall, but I am too healthy to be admitted into it (a good problem).

Thanks to all for the love, encouragement, prayers and support.

Encouraged

I had a good visit with the cancer doc this afternoon, proving that the skies are not cloudy all day, every day. The good news is that I will be discontinuing chemotherapy for at least a couple of months. Sixteen months on the chemo is long enough, and I am very much looking forward to the break.

Don't misinterpret this as meaning the cancer has gone down. Overall, it has continued a gradual and fairly uniform increase over the past 12 months (unless I am taking the steroid dexamethasone). What it means is that the cancer isn't too bad and I am just going to take a break from the treatment once this cycle is complete later this week. In a couple of months, Carol and I will go to the Mayo Clinic for my 4 year stem cell transplant check up, then go back and see the local cancer doc on August 30.

As always, thanks for the prayers, encouragement, friendship and support!

April Update

I went to see the cancer doc today. The cancer has been slowly creeping upward over the past few months, since December, but he says I am doing real good, and am in good shape for a cancer patient. He loves that I am still swimming 3 times a week at a good distance and pace. 

Although I am doing fairly well, the doctor wants me to continue on maintenance dosing of chemo (what I refer to as the "lukewarm" approach to fighting cancer, neither hot, nor cold, nor much of anything else). I was disappointed to not check out of (and leave) the Hotel California on this visit, and I think that I kind of irritated and annoyed my good friend the cancer doc with constant questions and referrals to data and logic, and general lack of understanding to this approach of fighting cancer. In light of the many I know who are in much more dire circumstances of cancer than I, I have much for which to be thankful and should be ashamed for my lack of gratitude.

I appreciate all of you for your friendship, support and prayers.

December Update (or downdate)

I went to see the cancer doctor today. For the past two months, there has been a decline in the cancer-indicating M-spike, from 1.1 in early October to 0.7 earlier this month. This is the lowest it has been in six years. The decrease coincides with the time that I have been adding (somewhat on my own) low doses of a previously prescribed steroid to the incredibly expensive cancer drug. The doc attributes the decreases to the incredibly expensive cancer drug that is not hard on my body, but my review of the data favors (from a strictly human perspective) the inexpensive steroid that is very hard on my body. Anyway, we know who is ultimately behind any decrease and give thanks to Him.

As always, your friendship, prayers, encouragement and support are much appreciated.

Update October 2016

I went to see the cancer doc this week, and things are just about the same. The cancer has increased very slightly over the past 3 months (from 1.0 to 1.1). The blood is also healthier, which means the bone marrow is getting replenished and making good blood again. The doc is very happy with the low amount of increase in the cancer, the improvement in the blood, and my overall level of fitness. I can out-swim at least half of the old ladies in the pool in the mornings, but I do still get tired more quickly than normal.

The doc is not prescribing any change to the chemo treatment. I will have another blood test in early November, and see the doc again in December.

The prayers and encouragement are much appreciated.

A Doc Who Tells It Like It Is

I saw the cancer doctor this past week, and discussed results of the blood sample taken the week before. The cancer indicator is down quite a bit from last month, but up slightly from 2 months ago. For the past 4 months, the readings are 0.7, 0.8, 1.3 and 1.0.  What this means is that last month was an anomalous data reading, either due to a goofed-up test in the cancer lab (my hypothesis), or because I was sick at the time the sample was taken (Carol's theory). Throwing out the bad data point, we are seeing a slow and steady increase of 0.1 per month. I will get another blood reading in early September, but it will be two months before I see the cancer doc again, because even cancer docs need a vacation now and then.

The doctor is pleased with the slow rate at which the cancer is progressing and also with overall improvements in the quality of blood the marrow is making. He said that after another couple of months of this lower chemo, I might get to take a break from it. 

I asked him why it is taking so long for my leg muscles to heal and for me to start walking better again, and he said, "Because you're old." But, I countered that I could walk great in the pool, just not so good on dry land. He said, "Not only are you old; you're also fat." (Maybe not his EXACT words, but I think that was the logical progression of what he meant.) 

Thanks for the prayers, support and encouragement.

Stay the Course

Carol and I just got back from seeing the cancer doc.  The cancer indicator increased by 60% (from 0.8 to 1.3) over the past month. Initially, this concerned us greatly, but the doc is not worried about it. He does not consider it to be a trend until he sees it for two or more months in a row, and he is a very good cancer doc. So for now, we will stay the course at the "maintenance" level of 10 mg of wonderdrug per day, as opposed to 25 mg of wonderdrug plus steroids, which is the treatment level. On another note, the doc is very encouraged and enthusiastic by increases in the overall quality of the blood. As always, your prayers, encouragement expressions of friendship and concern are much appreciated.