Friday, December 28, 2007

UPDATE: Prayers for Paul Walker WORKING!!!!



UPDATE 12/28/2007

We had an absolutely wonderful Christmas. On Christmas Eve we had Amy, Aaron, and Calvin, Andrew, and Marcia's family for dinner after attending church at 4:00 that afternoon. Amy, Aaron, and Calvin decided to spend the night with us Christmas Eve which was a real treat. Andrew came the next morning for brunch. We spent a relaxing and enjoyable Christmas with the kids.

Paul continues to feel better which is a true blessing. He has been able to almost eliminate the drugs that he takes for breakthrough pain. His extended release oxycontin is handling the pain at this point. He is much more mobile and is actually able to do a few things and enjoy life a little. The pain medication still causes some fuzziness, forgetfulness, and confusion. His hemoglobin is still low which causes a lot of fatigue, and he is still isn't driving; but it is all so much better than it was. He is continuing on short term disability.

We spent today at KU Cancer Center. Paul had labs at 10:30 which ran late, then a 2 hour bone strengthening infusion which ran late, then a 1:00 appointment with his doctor which ran late....so we finally got out a little after 4:00 Anyway, the news was good. His labs all point to the fact that his drug therapy is fighting the myeloma. All of his "numbers" have greatly improved since he started the drugs. On Monday, he started his third cycle of treatment. At this point, it looks as if his stem cell transplant will be at the end of February after his fourth cycle of treatment; but, of course, that is subject to change.

Our appointment at Mayo is January 2 for a consult. We will have to decide then whether or not to have the transplant at Mayo or at KU. KU told us today that their mortality rate for stem cell transplants for myeloma patients is zero which was reassuring. I hope after our visit to Mayo, there will be something that makes the decision easier one way or the other. The Mayo reputation is pretty persuasive, but there are certainly advantages to having the procedure at home.

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UPDATE 12/06/2007
Rick, sorry it has taken so long to get you an update. The last week or so
has been quite eventful.

One of the potential side effects of one of the treatment drugs is blood
clotting. In fact, aspirin is prescribed to help thin the blood. Well, I
still managed to get a clot in my calf. They did a sonagram on the calf (it
is not pregnant) to confirm and then they prescribed a blood thinner called
Coumadin. At this point I believe the clot has disolved but I will still
need to take the Coumadin for a while.

Also, the pain level from the cancer has increased to the point that they
increased my pain med dosage (Oxycodone) from 40 mg to 60.

I am now on a short term medical disibility leave of absence from work which
has been a lifesaver. There is really no way I could be going in to work
these days.

The good news is that after the first month of this drug treatment program,
the Dr. is convinced that it is working. The diagnostics are changing and
pointing in the direction I need them to go. So at this point, it looks
like I am on target for the stem cell transplant, hopefully at Mayo,
sometime early 2008. This is what I have been mostly concerned about - that
the treatment was not working and we were wasting time until we found a plan
that did work. I truly believe that the prayers from you and this group, as
well as others that are praying for me are making a real difference.

God bless you all for the prayers you have contributedd for this cause. I
very truly appreciate them greatly.

Thanks,

Paul Walker
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Update: 12/2/2007
Paul had his second appointment at KU yesterday. He had additional tests run the week before. We had good news and bad news. The good news is that the Revlimid is starting to work on the cancer. The bad news is that he has multiple lytic lesions in his skull (described as punched out holes), and the rest of his bones are thinning. I guess the good news there is that there are not currently lytic lesions on any other bones. He will now be starting monthly infusions of Aredia, a bone strengthener. He is still in a lot of pain. He wasn't sure if he could make it to work today. He is on extended release oxycontin, and they encouraged him to take smaller dosage oxycontin, as needed.

Linda


Update: 11/31/2007

Paul's doctor was not able to get him into Mayo any sooner than the December opening; and in fact, the first opening that they have now is January 2. We change insurance January 1, so I am not sure how that will work out. I am thinking that since Mayo didn't think that it was necessary to get him in earlier, that they don't think it is a crisis - which I am thinking is actually a good sign. Paul is starting on his induction drugs this week. Hopefully they will soon improve his physical symptoms. He is having a lot of pretty severe bone pain even though he is taking hydrocodone. He is not really able to do much besides go to and from work, and that isn't very easy.

We went to KU and had a long consult with a Bone Marrow Transplant doctor and a coordinator on Monday. We got a lot of good, but scary, information. At least we are more informed, and they also gave us a lot of material to read. We still would like to have the transplant done at Mayo, but are keeping our options open at KU. Amazingly, stem cell transplants are done on an outpatient basis. They will not do them unless he has a caretaker 24 hours a day, 7 days a week for the first month. It would be at least two months before he would be able to go back to work, and then probably only part time.

Just thought I'd let you all know the most recent...

Continue with the prayers.

Linda

UPDATE: 10/26/2007

We received the results of Paul's tests from the oncologist. Unfortunately, the myeloma is progressing at a very fast rate. Paul had been having bone pain in his ribs, back and hips since Hawaii. They originally thought that it was due to muscle strains from Hawaii because it came on so suddenly. The most recent tests show that it is myeloma. The doctor is recommending starting immediately on induction drugs to prepare for a stem cell transplant. It usually takes two-four months of these oral drugs to reduce the myeloma before stem cells can be harvested. That is followed by several days of IV high dose chemo therapy, and then the stem cell transplant.

After much research in the last couple of months, we have decided that we would like to go to Mayo Clinic for a consultation and then the stem cell transplant. Unfortunately, they have no openings for consult until December. Our oncologist here is checking with them to see if they can see us sooner. Regardless, Paul will probably be starting the induction drugs very soon. The oncologist says there are very few side effects with these drugs, and that they should improve his symptoms.

Please keep us in your prayers.

Linda

FIRST REQUEST: 9/3/2007
Paul Walker is a longtime friend of mine dating back to our days at Mizzou, where he was president of a business fraternity that I joined. We recently hooked up again, with his wife "Kooch" his college sweetheart. We met for dinner last year and later went to a Mizzou football game. Paul likes to fish, so we tarted making plans to do things occasionally since we are now living in the same area....then this...and the reason I ask for your prayers for Paul...


I am a little overdue on my latest update. Paul finished his 20 radiation treatments on July 26 and has been feeling great. Two weeks ago, he had a visit with his hematologist/oncologist. At that appointment, we found out the results of a cytogenetics test that was done in June. Due to the myeloma, he has doubles of some chromosomes and the absence of chromosome 13. The absence of chromosome 13 points to a more aggressive myeloma with a more unfavorable prognosis. Paul's doctor referred him to KU for a second opinion and stem cell consult. We went to that appointment last Tuesday. The doctor expects the myeloma to need more aggressive treatment within months; originally we had been told that it would probably be years. He has ordered additional staging tests to see how things are progressing. When it looks like things are advancing, the most likely treatment will be several cycles of chemotherapy followed by a stem cell transplant with Paul's own stem cells (autologous) followed a few weeks or months later by a stem cell transplant from a donor (allogenic). An allogenic transplant has many more complications than an autologous transplant.

As I said before, Paul still feels fine. We are enjoying spending lots of time with Calvin who is five weeks old now; and, of course, the cutest and sweetest baby ever. We are also getting ready for our big trip to Hawaii later in September.

Please continue to keep us in your prayers.

Linda

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