Paul Mizzou Walker Cancer UPDATE

UPDATE:

Bock,

Another step in the process that you can check Off!
Hang in there!
I was admitted to KU Med yesterday myself - have developed another nasty tumor.

Pauk

March 19, 2014 at 7:28 PM

UPDATE April 2012
Yesterday, April 15, was the 100 day milestone.  All restrictions are now lifted although Paul is still cautioned to stay away from those who are sick.  100 days is also the point at which Paul could go out to eat and have a beer.  Have to admit that we cheated a bit on that one in the last couple of weeks - just a little.  Today, Paul had labs, PET scan, and bone marrow biopsy.  We will get the results of those on April 30; that will tell us how effective the transplant was.  Prayers are still in order, thank you very much!  We go to Mayo in mid May for a second opinion as to what type of maintenance treatment would be best to lengthen the time to disease progression.  Meanwhile, Paul is feeling great.  He has recovered from the transplant and is enjoying not being on any cancer drugs.  

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I am writing this to tell you that Paul has been diagnosed with myeloma which is a cancer of the plasma cells in the bone marrow. It is a treatable, but not curable, fairly rare cancer. I have copied some info from www.canceranswers.com at the end of this if you are interested in finding out more about it.

I know that it would be better to call each of you personally, but that is overwhelming at this point. I do want to get the word out quickly, though, so that you can include him in your prayers.

Paul had what he thought was a pulled muscle in his side in January. He noticed soreness while working out and quit working out for several weeks. It improved quite a bit, but never totally went away. In May, it became more tender and he noticed swelling. He went to our primary care physicial on 6/6, CT scan was ordered for Friday, 6/8. He was asked to come in that same day for results, which at that time they thought was probably lymphoma. He had a needle biopsy on the mass on 6/12, and it was determined to be plasmacytoma/myeloma. He was referred to a hematologist/oncologist and had blood, urine, skeletal survey and a bone marrow biopsy done. We met with the hematologist yesterday. The tumor has destroyed the outer end of his 9th and 10th ribs. It was decided that radiation would be the treatment because he is Stage 1. We meet with a radiologist on Monday to schedule radiation. He has 1 of 3 major criteria and 2 of 4 minor criteria for multiple myeloma. It is hoped that the radiation will give him from 2-5 good years during which time he will be monitored closely, and then more aggressive treatment (chemotherapy, bone marrow transplant) will be needed. With this disease, for some reason, hitting it hard with aggressive treatment early does not improve the outcome.

There is stiill an outside chance that it is one plasmacytoma (which could possibly be curable) rather than multiple myeloma (which is not curable) We do believe in the power of prayer and hope that you will remember him in your prayers.

By the way, he still feels fine and is actually outside painting the house right now!

Paul Walker Update JAN 2012

January 9, 2012 UPDATE.  Taken to the mat...a few times.  But Paul gets back up.

To make sure you continue to receive our emails, please add services@caringbridge.org to your address book or safe sender list.

Dear Richard,

A new journal entry for Paul's CaringBridge website was posted at 5:04 PM, CST on January 9, 2012.

Paul's site: http://www.caringbridge.org/visit/paulwalker2

Mobile: http://m.caringbridge.org/visit/paulwalker2

Don't forget to sign the guestbook!

January 7, 2012 UPDATE...Paul fighting it ...but it is putting a hurting on him.

Paul had a very rough day yesterday.  He was was very confused, unsteady on his feet, extremely tired.  They had cut down on the dose of his anti nausea medicine yesterday, but it continued to affect him very adversely.  He was unable to do much of anything.  They put an alarm on his bed last night so that he wouldn't try to get up on his own.  They discontinued that medicine today, but he vomited shortly after.  So, they have started him on something else.  He is much, much better today.  It was pretty frightening yesterday, because he was worse on the day of transplant than he was the entire time with the first transplant....and he will still continue to go down and stay down for almost two weeks.  

Just wanted to let you know that our phones are now working at the hospital. 

Thanks,

Linda

January 4, 2012...UPDATE...The battle wages on...

Please sign Paul's GUEST BOOK.

He could use the BOOST that your minute of care will provide.  Throw in an inspirational quote if you have one handy.  Thanks...  Bock

May 2011 UPDATE:  Paul is going back to the Mayo Clinic this week; combination SCHEDULED visit and something "new" needing attention.  Please...say a quick prayer for Paul and his family.  That gift of prayer will pay you dividends when you are in need.  Thanks...RGB

Paul and Linda and the grandkids...

Paul is WINNING the CANCER fight.

Thanks for your prayers.

Caring Bridge is really cool...

http://www.caringbridge.org/visit/paulwalker2

Check it out...FREE, Informative...and CARING for sure.

Congrats on winning the battles Paul.

Paul Walker - Fight Tiger Fight UPDATE JULY

WEDNESDAY, JULY 14, 2010 4:18 PM, CDT

Well, 

Linda and I went up to Rochester Monday for my second monthly checkup and review.  I had bloodwork Tuesday morning and consultation with my doctor late Tuesday afternoon.  The first thing she said after "Hello" was that I no longer had an M-Spike!   That was great news.  That means the drugs are working and I am back in remission.  

She cut back on my prednisone so now maybe I can sleep over the weekends.  In the future, she will most likely cut back on the Pomalidomide (the clinical trial drug) which should cut back the fatigue and other side effects.  In the meantime, I am thrilled to have the side effects for something that has worked so well against the cancer.  In effect, it reduced the cancer from a fairly high level to undetectable in 2 months.  

Now I will just count on a long remission.   

Thanks once again for your prayers and support.  The support of family and friends has been instrumental in my handling of this disease and I am thankful for the relationship I have with each and every one of you.

God Bless,
Paul  

THURSDAY, MAY 20, 2010 7:43 PM, CDT

Wow, hard to believe it has been so long since we updated Paul's journal.  Much has happened since December.  Paul's "numbers" have continued to increase showing progression of disease.  We held off on treatment, but we are now at Mayo Clinic enrolling him in a clinical trial. 

He switched to Dr. Hayman, a Mayo clinic myeloma specialist, as his primary oncologist in March.  Since that time he has also found a new oncologist in Kansas City.  His KC oncologist was recommended by several myeloma patients that we knew through the support group and friends.  Since December, Paul has been getting monthly labs.  His numbers took a jump in March and then another big jump in May.  After talking to his Mayo doctor last weekend about a clinical trial at Mayo, on Wednesday they, scheduled appointments and we got here last night.  The trial is with the next "generation" of the drug that he was on prior to his 2008 transplant.  He had a good response to that drug, so we decided this was the right thing to do.  We met with his doctor this morning and he had several tests.  We met with her again this afternoon.  All that is left is the dreaded bone marrow biopsy, but at least at Mayo they put you out for it if you want.  So the biopsy is tomorrow morning and then we will meet with the clinical trial coordinator to get the drug....and we're off to the races.  Hopefully he will have a great response to this new drug with minimal side effects.

We are thankful that he has had two years without treatment and a great quality of life.  We knew that it would be temporary, and we are ready to take the step in the journey.    

At Paul's quarterly appointment in October, we were told that his myeloma "numbers" were trending up. We were told not to wait another three months for the next appointment, so Paul scheduled labs and appointment for December. We met with his new physician yesterday. His numbers are still trending up; however, it was decided to continue monitoring closely and to hold off treatment until the numbers worsened or he became symptomatic. He still feels great and was told to enjoy life, which he is doing. He is currently planning our next vacation; probably a driving trip through the southwest to the coast next spring. Wishing you all a Merry Christmas. Linda Walker.

Paul Walker HARVEST

Paul had a morning full of tests and then another appointment with the tranplant doctor. He signed consent for the additional drug to mobilize his stem cells. They will be harvesting his stem cells with the help of this new drug starting Monday, March 24. They generally harvest enough for two stem cell transplants in case another is needed; however, there is a possibility with his past trouble that they may only be able to harvest enough for one tranplant.

A rather major change is that KU is going back to inpatient transplants for awhile. Assuming the harvest is successful, Paul will be admitted to the tranplant unit on March 31, the first day of his chemo; and will be there for approximately three weeks or until his counts go back up. Last Friday, we talked to another myeloma patient that we had met at the support group. He was to be three weeks behind Paul on the tranplant schedule; but due to Paul's delay, he is now two weeks ahead. Anyway, he was told last Friday, that he would be inpatient. That gave us time to kind of get our heads around this before meeting with the doctor today; at least it wasn't a total surprise. We both feel comfortable with this change and feel that this is another way that God is taking care of us.

Again, thank you for all of your support and prayers. We know they are helping.- Linda(Calvin's grandmother!)

Paul Walker Cancer Treatment Update

Paul had labs today and his platelets are starting to go up, so the plan is to start the harvest or collection of his stem cells on Monday, 2/25. The chemo and infusion of his stem cells will be the following week.

We are anxious to get started; but, obviously, somewhat apprehensive.

The central line that he had put in on Friday was a bigger deal than we realized; and the care of it is somewhat involved. Once we start going to the cancer center daily, they will take over its care.

Thanks for your support.-- Linda(Calvin's grandmother!)

Paul Walker UPDATE...UPBEAT~!

In a message dated 2/12/2008 6:15:05 P.M. Central Standard Time, grandmalindawalker@gmail.com writes:

As of last week, the plan was to start harvesting Paul's stem cells the week of 2/18, and then the chemo and transplant the week of 2/25. He had a couple of full days of tests and consultations last Thursday and Friday. Most everything looked good, except his platelet count was low. This could be due to some medications which he is now going to hold or due to an infection. A low platelet count could make the harvest more difficult. At any rate, everything has been bumped back a week in hopes that the platelet count will go up. The really good news is that the results of his bone marrow biopsy show that his plasma cells are now only 2%. In June when he was diagnosed, they were at 10%. In October, when all of the pain started, he was at 70% in some places. At the beginning of January at Mayo, he was down to 5% after a little more than two cycles of the induction drugs....and now 2%. Actually 3% is normal; I always knew that there was nothing normal about him! The most recent skeletal x-rays show that he has compression fractures in his vertebrae that were not present in his 11/20/07 x-rays. This would explain the terrible pain he had in late November and December. The oxycontin is what is now controlling the pain. In the future he may consider having cement injected in the vertebrae. This would possibly help him get off of the pain meds. But first things, first....and that is the transplant.

Anyway, thank you for all of your prayers. They are really working. We will continue to need them in the coming weeks and months.-- Linda(Calvin's grandmother!)

Paul Walker MAYO Marathon

In a message dated 1/4/2008 12:37:01 P.M. Central Standard Time, grandmalindawalker@gmail.com writes:

We made our drive to Mayo in the frigid, windy temperatures on New Year's Day. The car was really blown around, but at least there was no snow. ,We met with our doctor on Wednesday morning ay 9:30 and she had already read through the files that we had hand carried up here. We really liked her and she spent quite a bit of time with us. Then we were off to the races with tests and appointments which really wore Paul out. He had an EKG, urine test, chest X-ray, bloodwork, and an appointment with the social worker on Wednesday. On Thursday, he had a bone marrow biopsy for which he was sedated - Yeah! He also completed his 24 hour urine collection. That pretty much completed all of the necessary tests since we had brought up copies and/or CDs of all of his past tests. He felt up to going out to eat last night which was great.

Today we had an appointment at The Gift of Life Transplant House which is where we would probably stay if we decide to have the transplant here. They said that the usual stay for a stem cell transplant is 6-8 weeks. The bedrooms are pretty small with a double and a twin bed in each and a recliner and small desk. TVs are not allowed because they want to encourage mingling and gaining support from others. There are common rooms with TVs and lots of sitting areas. You are provided two sets of towels and sheets and are responsible for your own laundry and cleaning. There are kitchens to cook in and numbered cabinets, freezer space, and refrigerator space. The cost is only $25 a night. It would be pretty close quarters for such a long period of time. Good thing Paul and I like each other.

Anyway, the big decision will still be where to have the transplant. We have been so impressed with Mayo. They really do put the patient first. KU, on the other hand, has a strong pull because of being at home. Hopefully when we meet with the doctor on Monday afternoon to discuss test results, there will be something that will help us make the decision.

We plan on driving home on Tuesday, weather permitting. Right now the weather channel shows snow for Tuesday, but that is still pretty far in the future.

Thanks for all of your prayers and support. We know that they are helping and bring us a lot of comfort. -- Linda(Calvin's grandmother!)

Paul Walker at Mayo Clinic for Tests

In a message dated 1/2/2008 6:17:28 P.M. Central Standard Time, grandmalindawalker@gmail.com writes:

Happy New Year to you too! We are in Rochester at Mayo. We met with the doctor today and Paul had lots of tests; more tests tomorrow and then we meet with the doctor again on Monday. Keep us in your prayers.

Thanks
Linda Walker
Calvin's Grandmother

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