Recipe for a Stem Cell Transplant

Executive Summary:
Take some blood out, collect some pre-cancerous stem cells from it, and put the blood back in. Then kill the cancer by killing everything in the bone marrow - good cells, cancer cells, innocent bystander cells, etc.  Put the harvested stem cells back in and hope everything starts working again.

More Details and a General Schedule:

First Week (Phase 1 is the first two weeks):
The first 1 to 3 days will be various tests to determine the current stage of the myeloma. For the record, it had increased significantly in October, and then began to skyrocket when tested at Mayo in Novmeber.  It will be during this time that my bone marrow will be sampled and analyzed.  Stem cells and blood cells are produced in the bone marrow.

For the next four days, I will be given shots to stimulate growth of stem cells, which might include an extra "kicker" shot on the last day.

Second Week:
One the first day, as assessment will be made of the stem cells, by collecting a blood sample. If ready, collection of stem cells will begin the following day by a process called plasmaphereis.  It will not be necessary to go into the bone marrow to collect the stem cells. Although produced in the marrow, they become dislodged and float through the blood. It is believed that the stem cells are pre-cancerous, and it is not until they develop into the protien cells that they become cancerous.

Anyway, for the plasmapheresis I will be hooked up to a plasmapheresing machine for about 4 hours each day of this stage. Blood will be withdrawn from my body, spun in a centrifuge to seperate the pre-cancer stem cells, and then the rest of the blood will be replaced back into my body.  It usually takes 2-3 days to collect enough stem cells, but can take up to six.  The amount of stem cells they collect depends on a person's age and weight, and they plan to collect enough stem cells to do two transplants.

Weeks 3 & 4 (Phase 2):
The first two days are when the actual chemotherapy takes place. I will be given high doses of melphalan. This will kill the cancer cells and everything else in the bone marrow. In the analogy of a garden filled with weeds, kill everything in the garden, weeds and good plants, too, and we'll come back in later and re-seed with the good plants. During these two days, I will have extreme nausea.

On the third day, they will start re-seeding with my stem cells to get my bone marrow going again. Pretty scary stuff, but it seems to work. Begining on day 4, the chemo starts to catch up with me, and I will spend the next 1-2 weeks feeling really crummy, losing my hair, and have the cells lining my throat, esophogus and stomach damaged.

Recovery:
Should take about another week, for a total of 5 weeks, if all goes well. It could easiley go another week or two. They send me home when I am done.

The whole thing will be done on an outpatient basis, and we will likely be staying in a group home called th Gift of Life Transplant House.

What's Up?

Many of you have been kind enough to ask for prompt information as to what happens with us up here at Mayo. We met with the blood cancer doc today, and it was decided that we will proceed with a stem cell transplant here in early 2013. It will require us coming back up here for several weeks at that time. It will be an arduous and unpleaseant process, but the end goal will be having the cancer go into "durable remission," and stay off of chemo for 7 to 10 years when it's done.  That's longer than the initial period given for anticipated survival at the time of diagnosis 5+ years ago.

Thanks to all for your many prayers in regard to this visit! We'll keep you updated as things get scheduled and further information develop in the next few weeks.

Cancer Update October 2012

There has been a lot of medical activity the past couple of months. On the positive side, I had a full skeletal (X-ray) survey performed in September, the first since diagnosis 5 years ago. It showed that there continues to be no deterioration of bone due to the disease.

On the not-so-positive side, the M-spike (indicator of cancer level) has increased to 2.0. We had set 2.0 to 2.5 as the range for when I would need to resume chemotherapy.  Although we were expecting this, it is a few months sooner than I was expecting.  I saw the cancer doc on Wednesday. He says I am looking great, but's it's time for me to get my game plan on for resuming chemo.

To that end, Carol & I had already scheduled a trip to the Mayo Bros. Clinic in Rochester, MN, the week of Thanksgiving, to consider an alternate method of treatment there.  Originally, I thought I would have to enter a clinical research study to get the treatment I want, but it now seems that I may be able to get it through conventional means.  It would be a stem cell transplant, but unlike transplants available locally, the end result would be "durable remission," whereby the cancer is still there, but at a low level that does not increase, unlike my cancer has done the past few years.  Anyway, Carol and I will go and talk, and see what results.

If I do go the Mayo route, I will need to spend some time up there next winter, and Carol would take a leave of absence to go with me.  If I choose to continue my treatment path of the past few years (which has not been a bad path), I will likely still wait until January to resume chemo due to insurance reasons.

That's about it in a nutshell. Sorry this is so long, but a lot has happened.  As always, I appreaciate your love, prayers, friendship, encouragement and concern.   - Daryl

A Very Meaningful Anniversary

 Five years ago today, I received my diagnosis of multiple myeloma. This is a particularly meaningful anniversary because what I was told at time of diagnosis was:

• You have multiple myeloma, a cancer of the bone marrow.
• We can treat it to keep it down as much as we can, but we can’t cure it.
• We have no idea how long it is going to take for this cancer to kill you, but our best guess is 5 years.

So, here I am at 5 years, their best-guess prediction for survival, and still going. I was on chemotherapy for 2½ years, and then took a break to allow my body to recover so we could fight the cancer some (I say “we” because I am not certainly in this fight alone; I have cancer, Carol has cancer-in-law). I was hoping for a 6 month break from the chemo, and the break has lasted for 2½ years as I go in for bi-monthly checkups to keep an eye on where the cancer level is. My “best guess” is that chemo will need to resume in early 2013.

Anyway, what a great 5 years this has been! During these past five years, I have been blessed to see three grandchildren born into the family and one granddaughter added by special delivery from Guatemala.  In May of 2010, I saw my youngest son marry a wonderful young lady. A few months later, three years and one day to the day from diagnosis, I walked my youngest child and only daughter down the aisle to marry the wonderful young man of her dreams. God has been good to me. I have lived to see all of my children marry godly individuals and doing well in life, and have lived to see (and enjoy) seven children of my children. 

All of this is in addition to many blessings of ministry and family both here and abroad, and I have been able to maintain more than full-time employment.

At the outset, I realized that the cancer was no random occurrence in the universe, but came to me from the hand of a heavenly Father whose love for me goes far beyond my ability to comprehend. As a result, several hymns became very meaningful to me.  There are “Children of the Heavenly Father,” and “Be Still My Soul.” Each line of the aforementioned songs is my personal testimony during this time. But the most meaningful hymn, from the start, has been “All the Way My Savior Leads Me,” by Fanny Crosby.  Again, each stanza means a lot to me, but here is just the first verse:

All the way my Savior leads me;

What have I to ask beside?

Can I doubt His tender mercy,

who through life has been my guide?

Heavenly peace, divinest comfort,

Here by faith in Him to dwell!

For I know, whatever befalls me,

Jesus doeth all things well!

PS -during the past five years, I have become very offended by commercials that give the impression that if you have the “right, fighting attitude” and some particular hospital, you can beat cancer.  I have seen people with really good attitudes go down with this disease, and a good attitude can’t beat cancer any more than it can beat a bullet to the heart. Our lives are completely in the hands of God. There is no place I would rather it to be.

Update June 2012

Results of a blood sample taken last week indicate that the cancer M-spike increased this two-month period from 1.2 to 1.6.  If viewed as an isolated data point, 33% could be viewed as a substantial increase. Given the range of the accuracy of the test, however, it is possible that the past few readings, when things seemed to be stable or even decreasing, may have been on the low side of the test's accuracy, and this time's may be read a little on the high side.  It can vary quite a bit simply by who is reading the test results.  Cancer patients (hopefully) learn to not get too excited one way or the other by results of a single test, be it good or bad.  Regardless, this is precisely the level at which I expected to now be when I was making my own, personal projections last November or December.  If this is the case, resumption of chemotherapy early in 2013 remains likely.

Again, no change in the course of action for now.  We will sample and test again in August to see if this is the beginning of a significantly increasing trend, or if the overall gradual increase is continuing at its anticipated rate, or if this is just a aberrant data point and things are staying stable.  We are still safely below the trigger point that Carol, the doc and I set a year ago for resuming chemotherapy.

Thanks to all for love, prayers, encouragment and concern.

Two years and counting

Today makes two years that I have been off of chemotherapy. I was hoping for a break of at least 6 months, and am very glad it has lasted, and is lasting, this long.

Two Items of Good News

I got a couple of pieces of good news within the past week. Today, I went to see the cancer doc. Results from the blood sample taken last week showed a decrease in the amount of cancer - a slight decrease, but a decrease nonetheless. It is the first decrease since discontinuing chemotherapy almost two years ago, after a lot of slight increases or no increases. For now, we stay the course at just monitoring. I will get my blood sampled again in two months, but won't go back to see the cancer doc until 4 months from now.

The other piece of good news is that I had that horribly unmentionable and wonderfully life-saving procedure called a colonoscopy done last week. Several years ago, we stayed less than a half-step ahead of cancer on a big ugly tumor found on one of these routine procedures. Get it done if your doc says it's time. It could literally save your life, it did mine. Anyway, these results came back clear, and I was very glad. I did not want to have to fight cancer on two fronts (or would that be one front and one rear?) simultaneously.

Thanks for the friendship, love, prayers and concern.

Update, Feb. 2012

I got results back on the most recent blood sample, and there has been no increase (or decrease) in the cancer since the last sampling two months ago. The cancer doc was real chipper about it when I saw him today. For now, it is stay the course and continue to monitor. Thanks to all for prayers, love and support.

"I have been, and will always be, your friend."

This morning I got to have breakfast with my best pal from high school days, Guy Ray. He went to Messick High and I went to White Station, but we met and got to be pals at church. He reminded me of Spock's quote that is the title of this blog, and the same is said by both of us in regard to the other.


Here is a picture of us at church camp one summer sometime in the 1960's. Guy always was the cool one of this duo. I don't think we've changed that much, do you?