Saturday, January 12, 2013

Tuesday Afternoon (Happy & Sad Stories)

On the brief visit we just had to Mayo Clinic in Rochester, we were kept pretty busy rushing between appointments and testing at the clinic. On Tuesday afternoon, however, we did get a chance to visit with some of the other guests in the Gift of Life Transplant House. Most of the stories have happy endings. Many of the patients are there for a stem cell transplant, using their own stem cells, and the history of success is very high.  Others, though, for various reasons, cannot use their own stem cells and must rely on a donor. Their success rate is not so high, and on Tuesday one resident got the news "We're sorry, your body is rejecting the donor's marrow. We've done all we can do, and there's nothing left to try," and his reply was, "I just want to go home." We visited with his sister/caregiver that afternoon.

And then, there are the situations where even the happy story is integral with a tragedy.  Some of the patients are receiving transplants of heart, lung or liver, and there is the awareness that although they are alive and have survived the transplant process, it was at the cost of some other person's life. Sometimes, the organ recipient will read or hear in the news about a specific young individual's life cut tragically short by an accident, and know they are alive because that youngster has died. They share the emotional mixture of joy and sadness, and gratitude and guilt.

Late Tuesday afternoon, we had to run back to the Mayo Clinic, then wandered the shops of the downtown area after dark. The picture to the right is of Carol at our dinner in a well-recommended Italian Restaurant named Victoria's. That's an odd name for an Italian Restaurant, but the food and the atmosphere were superb!

Synopsis of Step 1

Just now have time to give you a little update on the completed Step 1 (Assessment) at Mayo.  Monday and the first half of Tuesday were filled with all sorts of tests and sampling. They took 13 separate samples/tests, including a sample of the bone marrow and numerous X-rays. We had a brief break on Tuesday afternoon, then all day Wednesday was spent meeting with the RN who will be the transplant coordinator and the doctor in charge of the procedure.
 
The upshot of it all is that my heart and lungs are in great shape, and the other organs such as liver and kidney are in good shape, too. The skeletal frame is also in good condition, with still no sign of damage from the disease. Cancer activity in the bone marrow is at 20% - 30% (20% - 30% of the cells are affected by the cancer).  This is still significantly less than the 65% at diagnosis, but up from the 12% at last measurement 3 years ago. The M-spike indicator of the cancer showed no increase from last November at Mayo (7 weeks ago), but I'm a little unsure of those readings.
 
Carol & I decided to return to Texas for a week of working while in Step 2 (waiting for insurance to approve further procedures). If all goes according to plan, we will head back to Rochester on Wednesday afternoon, and begin Step 3, which will be several days of injections to boost stem cell production, and getting fitted with hardware called a palidrome (sp?), which is flexible tubing inserted into a major vein in my chest to allow for extensive blood work in Step 4.
 
Thanks for prayers, friendship and concern.

Wednesday, January 9, 2013

Home Sweet Home

Our home while I am receiving treatment at Mayo is the Gift of Life Transplant House, 705 Second Street SW, Rochester, MN  55902.  Here are some photos of the house. The first was taken at 6:45 AM while I was walking the 3 1/2 blocks to the Mayo Clinic. The second was taken on the way back home shortly after noon.  Also ,here is a like to the house website. The picture on the website is of a second, newer house right across the street. http://www.gift-of-life.org/

















The portion of the house shown was originally the residence of Dr. Edward Judd, the first doctor/surgeon to join the staff of the Mayo Clinic after the two original brothers. We are staying in a new wing added onto the house at the back. 

Tuesday, January 8, 2013

Step 1

The stem cell transplant is a multi-step process. On Monday, Tuesday and Wednesday of this week we are in step 1, which is testing, testing and more testing to evaluate the stage of the cancer and detemine my viability as a stem cell transplant patient. They have sampled and tested all sorts of things, including a bone marrow sample on Monday.  After 3 days of testing, we begin a week of waiting on the insurance company to approve the process (step 2). During this week, we plan to return to Dallas on Thursday, 1/10, work for a week, then come back to Rochester on Wednesday, 1/16.

Friday, November 23, 2012

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.

Monday, November 19, 2012

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.

Friday, October 26, 2012

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