My Feet Are Getting Better

My feet are not bothering me as much lately. Most of the time, now, I take the Vicoden only twice a week to get to sleep. I notice different feelings in my feet. Not really "better", just different. I am imagining that the new tingles are signs that feeling is coming back to my feet. Once or twice a week they are stonger and keep me from falling to sleep - so I take two pills and off to sleep.

Neuropathy in my Feet

I am still dealing with the pain/tingling/numness/hot-flashes in my feet. I use the pain pills 6 days out of the week to get to sleep. Exercise (gym or jogging) does not seem to make a difference. I found a discussion on Velcade-induced neuropathy which does a good job of summarizing the situation.......
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"Velcade-induced neuropathy can take months and months to remit. We often state that tingling alone can resolve in a week, tingling and numbness can take months, tingling/numbness/pain can take a year, and severe painful neuropathy will likely get better but never fully resolve. This is not a very positive thing to tell a patient, but it's the truth."
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bye

100-Day Test Results

Well, we did not get the best report that we expected but we did get a "good" report. The cancer is not in total remission - there is still some cancer activity going on. It is at a very low level and I could live with that for "years". I will go in for a blood test every two months to keep an eye on the cancer. When it grows, it creats a byproduct which can be measured in my blood. The doc sais that as long as the measurement stays below a certain value, that we will just go on with it as is. If it goes above a certain value, I will start on another drup to fight it back down. - - This was the first test after the chemo. I will go again in late December to see if there are any changes.

My 100-Day Test Is In Progress

We made my appointment for the 100-Day test to determine what effect the chemo had on my cancer. Last Monday I donated all the the body fluids they needed for the tests. Next Wednesday, 11/3, I report to the doctor's office to hear the results.
All of the side effects from the chemo are gone except for the Neuropathy in my feet. Weight is returning and appetite is great. I can run a little but either my wind gives out or the foot problem kicks in. On my old 45 minute route, I find that I can alternate between running and walking 250 steps for most of the way.
bye

I Have the Walking Down Pat - Let's See if My Feet Can Stand Jogging

I have been walking three miles in just under one hour every other day for two weeks. My feet hurt worse on the "walking" days that they do on the resting days. I wonder what happends if I try jogging. The first series of chemo that I got in May-June-July used the drug Velcade. In many of the people, this drug causes Periperal Neuropathy in the hands and feet. Well, my feet are experiencing this problem. Often, my feet hurt so much that I cannot fall asleep. I have some Vicoden tablets left over from a tooth problem that really help a lot if I take them one hour before bedtime. The Mayo doc has given me a drug to help my feet but we have have found the correct dosage yet because it is not helping. So, between my lungs (which have been resting for two months) and my feet, I doubt if I will run very far - but I'm gonna try. I miss it. - - -bye.

Blood Test Completed - Everything is "On Schedule"

"Just keep doing what you are doing, and come back in 40 days."
The meeting with the Doctor was a brief one. "All of your numbers look great. They are coming along just fine and are right where we would expect them to be at 60 days." Apparently, this time period that I am in (the first 100 days) is a big waiting period. They don't do any cancer related tests until day 100. They just watch my immune system rebuild all along the 100 days. Right now, my immune system is in it's "teenage years" and it is expected to continue to "mature" over time. All of my food-related and crowd-related restrictions are still in place. All of my food must be cooked. No raw vege's, peel apples and peaches. Don't go to Walmart at it's most crowded times.
So, the next big date is around Oct 20. At that time, we will measure the protein in my urine which is an indication of the cancer activity in my bone marrow. bye for now, George

Next Important Date is 9/21

I will have a blood test 9/21 to see how my immune system is recovering. Then I find out if any of my eating or socializing restrictions get removed. This has nothing to do with the cancer.... I have to wait until day 100 before they will determine what effect the stem cell transplant has had on the cancer.
I am walking three miles in about one hour every other day. If I do it every day, my legs complain.

Still Good News - No New Problems

My INR was a little high at the last test, so they adjusted my coumaden dosage down a little.
Eating, sleeping and walking are all doing fine.
I'm working at my volunteer job for 2 to 3 hours a day also.
bye, George

Good News - NOTHING New to Report

I feel good!
Nothing new to report.
I'm walking every day, eating plenty, and sleeping well.
I don't see the Doctor until 9/21.
The INR came in at 3.2. Will get tested again on Tuesday.
Bye for now, George.

Things Are Looking Up - Yea!

The temperature is gone.
The shots in the belly have stopped.
The coumadin related INR number is stabilizing.
I am walking every morning for about 30 minutes at a good pace.
The appetite is returning. I have lost 10 pounds over this ordeal.
I'm going to start working at my volunteer job for an hour or two a day.
I still get very tired but, when I have something to do, it is much less od a problem.
Happy Day!

Getting Settled Into the Coumadin Routine

When one is on coumadin, there is a test to determine if the dosage is "correct". The INR number is an indication of how "thin" your blood is. Before the drugs, my INR was 1.1. The goal, on the drugs, is 2.0 to 3.0. To get me there fast, a series of shots were scheduled twice a day for up to 7 days along with the drug. Sue was able to give me the shots. After three days of drugs and shots, my INR was 3 and the shots could stop. Now, I continue with the drug and get the INR tested twice a week for a while to see that the combination of drug dosage and my diet allow the number to stay in the 2 to 3 range. Drug dosage can be adjusted weekly if needed. It is estimated that I will be on coumadin for three months.

I'm Too Upset to Write Something Cute - Now I Have a Blood Clot

My daily temperature has come down to 99 degrees. It's still a little hot, but not as bad as the 101 degrees.
My stamina is returning to a level consistant with being at Day 25. Thats good.
Thursday we were in Mayo for one more test to find the cause of the fever. I was getting an Ultrasound of my upper right chest area where the Central Line used to be. It was 10AM, and my next appointment was at 12:30 to see my main doctor. The ultrasound technician finished the test, said that I could get dressed and asked me to wait a few minutes while they checked with the Doc to make sure that they got all the images that were needed. The Tech returned, said that the testes were complete and that they had moved my 12:30 appointment up to "immediately". Historically, my main Doc is never early because he is very busy. Something is up!
When I got to the next appointment, there were a few people that I had been working with on the fever challange. "Mr Jester, we found a Blood Clot during the Ultrasound and we have to start treating it immedately!" I will tell you more after I get my mind around this new development.
For now, I have started taking a blood thinner and have joined the Mayo Coumadin Clinic. I go to the clinic at least twice a week to have my blood tested and the coumadin dosage adjusted. The treatmnet will last about three months.
It is wonderful that they fould the clot before it caused any problems. It just sucks that I have one.
bye

I Feel Like I'm On The Dr. House Show

Do you watch Dr. House? He is a specialist in diagnosing people's problems. 50 minutes of the one-hour show are sprent experimenting with various drusgs while they are zeroing in the real cause. Well, I'm definately in the first 30 minutes of the show! They put me on another antibiotic for a week. NO change in my temperature yet. - They removed my Central Line because their best guess was that it has an infection in it. (One that does not show up in any of the cultures we did.) So, it's out and now, whenever they need to draw blud or infuse a drup, they have to "stick" me. My veins have all withdrawn into hiding! We drove to Mayo Monday through Friday of last week. That is 85 miles rund trip. I wish I was still in the hospital!

Good Blood Counts are Not The Whole Story

Unfortunately, I have had a low grade temperature for the last 4 or 5 days. Yesterday, it spiked to 102.4! I am exhaused most of the time. I sleep, or at least sit with my eyes closed about 20 hoursa day. We went to Mayo yesterday to have blood drawn so see if I have an infection. The odd part is tht I do not feel ill. I feel like I can't keep my eyes open, hardly have the strength to walk and have this #@$% temperature. I hope that the testing yesterday an today finds something.

My Blood Counts are Doing Great!

The recent blood tests show that all the counts are returning. They (Doc's) say that the numbers are improving even faster than they would have expected. I am a model patient.

Been Home for Three Days Now - Still Sleeping a Lot

The trip home was uneventfull - I even stayed awake for the entire 55 minute drive.
Now that I've been home for three days, I notice that I am still sleeping most of the time.
Eating is getting better although it is not from hunger as much as I know that I have to eat.
The Taste Buds are still on their wild journey - I never know what is going to taste good today.
I go to Mayo today (8/16) to have my blood drawn and tested to see if all of the numbers are getting better.
bye.

Now Let It Try to Fall Out!

Well, here I am - shaved from the neck up.

Day12 and I'm Going Home Tomorrow

Yea! My counts have really jumped over night, and I have not have a temp for 2 days. I am scheduled to go home tomorrow (8/12). I'm ready to go too. I have noticed hair starting to come out from my head and even my eyelashes. I've decided to have my head shaved to minimize the mess in the bed. Watch for a photo of the new me.

End of Day 10- very little improvement

This is Sue. George is so exhausted he cannot write on his blog. From Friday to today his white blood cell count has come up from 0.1 to 0.3. Normal is 4.2 to 10.2. The wiz kid has slowed down a little. The Dr. says not to worry; soon his count will start zooming up. But for now he is very, very tired. At this time they are expecting he will go home no sooner than Thursday or Friday but we just have to wait and see what happens.

My First Day With The Fever - Ugh!

My body is tired to begin with and now it has to deal with a fever. I slept all day except for the visits to take my vitals. I did not eat one bite of solid food. The fever has been hovering in the 99.5 to 100.6 range all day. All I want to do is sleep. This is Day8. They say my counts should start recovering soon.

This is the Doctor Speaking - Activate The First Fever Protocol!

I got my first fever. It spiked to over 102 at midnight which triggered the First Fever Protocol. They took a chest X-ray and drew blood to start a number of cultures. Since we do not know what is causig the fever, they start these cultures to see which one will "grow". Based on that they can tell what kind of bacteria I have and give me the correct antibiotic.

Three Days of No Energy and No Appetite

I have been laying in bed for three days. I don't even have the energy to take my walk in the morning/  I can't keep my eyes open most of the time. My Blood Counts continue to fall.

Today is "The Day" Plus 4

We have a funny way of counting days here in stem cell transplant land. The day that I got my stem cells returned to me is "The Day" or Day Zero. I got my chemo 2 days before that on Day-2. Today is Day +4 or Day 4. They are telling me that my blood counts should hit rock bottom on Day7 and that will be the worst time for my symtoms. After that, I should be getting better on a daily basis. The are projecting that I might be able to leave the hospital around Day 12 if my counts go up as expected.

No Side Effects - No Appetite

I have no appetite. My taste buds are on a wild drug-induced ride and make things taste stronger or weaker. If I get a ham and cheese omlet, the ham tastes like a block of salt. Or, the cherries on the cherry cheescake are s-o-o sweet that I cannot eat them. Today, 5 days after chemo, nothing tastes right. The are no other side effects to report.

No Negative Side Effects (Yet) - But I Am Sure Tired

The good news is that the dreaded side effects are not starting yet. The Nurse says "just wait". I am very tired though. They come into my room to take vital signs every four hours around the clock. So I don't really get to sleep more than 2 or 3 hours at a time. Then, at 4AM and 4PM I have to get out of bed and get weighed. After they leave at 4AM, the breakfast is delivered at 7:30. So there's not much sleep in there either.

My Stem Cells Are Back

The whole process took about two hours. The three bags of stem cells came inside a liquid nitrogen container. It looked very science fiction. Each bag was defrosted in a warm water bath and added to my drip line. At that point it looked like a regulare blood transfusion. There were assorted other drugs added to the drip to prevent vomiting and to prevent other side effects from the preservative they had added to the stem cells for freezing. That was all over bt 10:30 AM. Now the stem cells have to find their way into the bone marrow to replace the ones we killed two days ago.

Chemo Is Done - Now the Fun Begins

The chemo drug (Melphalan) was put in through my port yesterday afternoon. I got 1000ml in one hour.  To minimize the mouth sores that are coming, I had to make my mouth as cold as I could stand. I kept crushed ice in my mouth from 30 minutes before, to 30 minutes after the chemo infusion By the time I was done, it seems as if my speach was affected from my frozen mouth. Boy, did I pee for a while after all that ice! All of the potential side effects will take 3 to 12 days to show up. My hair loss will happen in abut 2 weeks. I do not have any side effects today. Today is a day of rest. My stem cell infusion will be tomorrow (Friday). 

Checked Into Mayo Hospital Today

OK, it begins. We checked in today (7/28). The high-dose chemo will begin at 4PM and will take a couple of hours. The biggest concern for today is the potential mouth sores that 'may' develop from the chemo drug. To fight that, I have to suck on ice chips before, during and after the chemo treatment. They say that if I keep the skin in my mouth really cold, the mouth sores will be minimized. We will see....

The Bleeding Has Stopped

Good news! The bleeding has stopped and the nurse that did the last cleaning was gental and did not open the wound again. I hace two days off before we check in on Wednesday for the chemo and stem cell infusion.

The Central Line continues to ooze.

Every time they clean the catheter, they distrub the stitches and it starts to bleed again. Then the dressing gets full of blood and it has to be changed. It stops bleeding over night. Then they clean it and it starts to bleed........... I have been to the Hospital to have the dressing changed three times since Tuesday and this is getting old! When I go in Sunday (7/25), I am going to suggest that they do not clean it. Just change the dressing and let me go until I check-in for the procedure on Wednesday, 7/28. Clean it then so that I don't have to drive again for a dressing change every day.

The Harvest is complete on 7/22.

Yea! Another 5 hour session, and there were enough stem cells harvested to stop. The goal was 8 million cells. We got 5.1 and 4.3 over the two sessions of 7/21 and 7/22. There were 4 sessions scheduled just in case I needed them.

The Harvest Started 7/21

They started to harvest Stem Cells Wednesday, 7/21. I was hooked up to an Apheresis machine for 5 hours! The whole process looked very similar to a Dyalisis process. My blood was sent thru the machine, the stem cells removed, and the blood was returned to me. Did I say that I sat there for 5 hours!

Tunnel Catheter Inserted Today

My Tunnel Catheter was inserted today in my right side near my collar bone. It was about a 30 minute procedure in the operating room. I was not "out" but in a twilgiht condition as they called it. No problems. One hour in recovery to let the drugs wear off and we were on our way. Stem Cell collection starts Thursday.

Getting Ready to Harvest my Stem Cells

I started getting a daily shot of NEUPOGEN, Sunday, to cause my body to make more white blood cells to get ready for the stem cell harvest this Friday. This causes me to have an abundance of white blood cells and the harvest goes well. Wednesday I get a central line installed and Friday the harvest takes place. I get connected to a machine that looks like a dialysis machine. My blood goes through it, the stem cells get removed, and the blood gets returned to my body.

Pre-Transplant Physical Exam Completed

I have completed two days of testing. When they took my blood, they used 14 test tubes because there was going to be so many tests performed using the blood. This was a very complete round of tests used to find "anything" that may be wrong at the moment that would become a major problem after my immune system is killed by the high-dosage chemo.  We start a 10-day waiting period now so they can review the test results and give me a clean report as a go-ahead for the chemo.

Mayo Visit - Stem Cell Transplant is a "GO"

We met with Dr. M at Mayo and he told me that I am an excellect candidate for the high dosage chemo treatment and the Stem Cell Transplant. So, for the first week of July, I will have a physical and tests to make sure I can stand the coming treatments. Second week of July is a rest. Third week of July is the Stem Cell Harvesting. Fourth week of July is check-in to Hospital, get the high-dosage chemo treatment, and transplant the stem cells from week 3. I will be in the hospital for about 2.5 weeks and go home mid August.

Peripheral Neuropathy is Starting - Reducing Velcade

I am having symptoms of peripheral neuropathy. Spoke with Dr.S and Dr. M (at Mayo), and they both agreed that we should reduce the Chemo drug Velcade. We kept the amount the same but changed the frequency from twice a week to once a week. Let's see if that helps..............

Initial Consult Set-up With Mayo Clinic for June 17

We got through the registration paperwork, records transfer and doctor assignment process at Mayo. My Initial Consult visit is set-up for June 17th with Dr. Slack to discuss the opportunites for a Stem Cell Transplant. Thank goodness they are part of the Optum Healthcare Centers of Excellence Program and considered "in network" because of it.

Cycle 3 of Velcade Chemo Going Well

I am half way through the third cycle of chemo and the after-effects are continuing to remain low. Interruped sleep is the most annoying. There are nights when I wake up every 20 to 30 minutes and take 15 to 30 minutes to sleep again. Then there are nights where I wake up once and sleep the rest of the night. I catch up with a nap or two the next day and I am fine. It's more annoying than anything else.

Platelets Good - Starting Third Round of Chemo

5/25/10: Back on Chemo - Platelete Number Were OK
Started the third round of Chemo today. Back on the Tues, Thurs, Tue Thurs routine.
Sleeping has been getting better lately. I'm not sure if it is due to being off Chemo for two weeks or not. Let's see if this third round of Chemo brings the sleeping problems back.
Doc has told me to set up the consultation appointment for the stem cell transplant. As soon as I get confirmation from United HealthCare that Mayo is "in network" for this work, I will set up the appointment.

Protein Spill Numbers are Great! But, I Wonder??

5/18/10:  The results of the 24-hr Urine Test show that my Protein Spill over a 24-hr period went from 1440 to 72.5. (The good range is 30 to 150) This is after two Chemo cycles. This is great news for my Kidneys. However, it is such a major reduction that I wonder if the test was done right? I will ask Doc to repeat the test next week to see if we get two results in the same ballpark.

Delayed Chemo Series #3 for One Week

5/18/10:  I was supposed to start Chemo series #3 today but my blood test showed that my Platelets were very low and the Doc delayed Chemo for at least one week. The good range for platelets is 140 to 415 and mine were 88. Since Chemo lowers them even more, we had to delay Chemo.

Big Picture Summary for my Family and Friends

5/11/10 - I am adding a Big Picture Summary here because I have sent emails to Family and Friends directing them to this blog and I want one posting that they can read to get up to date.
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What Is Multiple Myeloma?
Multiple myeloma is a type of cancer formed by malignant plasma cells.

Plasma cells are found in the bone marrow and are an important part of the immune system. They make the antibodies (also called immunoglobulins) that help the body attack and kill germs. When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. When many plasma cell tumors are found throughout the bones, it is called multiple myeloma.

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out the normal blood-forming cells. This can cause anemia -- a shortage of red blood cells. Anemia causes people to become pale, weak, and fatigued. Another condition that can be seen is leukopenia -- a shortage of normal white blood cells. This can lead to difficulty fighting infections.

The abnormal plasma cells do not protect the body from infections. For example, if you developed pneumonia, normal plasma cells would produce antibodies that specifically attack and kill the bacteria that were causing the illness. The myeloma cells crowd out the normal plasma cells, so that the antibodies to fight the infection aren't made. The antibody made by the myeloma cells does not help fight infections.

The myeloma cells also react with the cells that help keep the bones strong. There are 2 major kinds of bone cells that normally work together to keep bones healthy and strong; cells that lay down new bone and cells that break down old bone. Myeloma cells make a substance that tells the break-down cells to speed up the dissolving of bone. Since the other cells do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma.

I have only been in this cancer world for 6 weeks. I honestly do not know the answer to "How Long Do I Have To Live?" at this time. I do know that we found this early in the development of the cancer. I do not have any of the symtoms discussed. I have the low white blood count and the extra protien in my urine. I did have full body x-ays and they did NOT find any cancer growths on any of my bones.

The treatment plan we have started is Chemo Therapy. I will go for four "cycles" of Chemo. (Two weeks ON and one week OFF is one cycle) which will end some time in July. I will be evaluated for a bone marrow transplant (called a stem-cell transplant) in June which will determine what happens for the rest of the summer. Multiple Myelome CANNOT be cured. It can be reduced or even put into remission - but it is not cured, it can come back at any time and it usually does from what I have read.

So, stay tuned. As I learn new stuff, I will communicate with you. I have started a Blog to record my thoughts and progress.
You can see it here: http://jesterjournal.blogspot.com/
In there, I am trying to share my feelings and conditions.

bye for now,
George

Second Cycle of Chemo

4/27/10: The second cycle of Chemo will be April 27 and 29, and May 4 and 6. I have not noticed any major negative after effects of the chemo. The minor problems are constepation and interruped sleep. Some nights I only sleep for two hours and others I sleep for an hour, wake up for two and sleep for more later. I have not taken any sleeping pills yet. I don't seem to be very extra tired the next day after these bad nights. The nurse said to get on something if I find that I am very tired after not sleeping for a few days. (Not yet thought) We are going to do another 24-hour uring test on May 12 (after these two cycles are done) to see of the Protien Spill has been reduced by the Chemo.

The Chemo Begins

4/6/10: First Chemo treatment today using Velcade. I get a bag of Aloxi.... for nauesa, a bag of Decadron (a steroid tohelp the Velcade), a push of Velcade and a bag of Saline. I am also on a pill program. Dexamethason: 20mg on Monday. Prochlorper: 10mg every 6 hrs for nausea. (I am not needing this pill so far). Acyclovir: 400mg twice a day to prevent Shingles.
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One cycle of Chemo is about three weeks. During the first two weeks, I go for chemo on Tue, Thurs and Tue, Thurs. Then I have 12 days of rest and start the next cycle on a Tuesday. The first cycle will be 4/6, 4/8. 4/13 and 4/15.

Kidney Doc Says They Are Fine

3/23/10: Took my blood results to Dr P to establish myself with the Kidney Doctor. After review, he said that I do not have any negative kidney indications and that there was nothing he had to do for me at this time. Come back in 6 months for another review. Yea!

Protien Spill in my Urine

2/9/10: The 24-urine test has been completed for the second time. Both results indicated that I was "spilling" 1400 mg of protien in a 24-hour period. This is 100 times normal and MAY lead to Kidney damage down the road. Dr. S2 wants to treat the protien level right away.

Bone Marrow Needle Biopsy

2/3/10: Eileen performed a Needle Biopsy today on my pelvis. Lots of pushing and probing but not really any hurt. The results came back with the terrible words - "evolving into Multiple Myeloma". The bad plasma cells in my blood are at an 11% concentration. Normal is 2% and Myelomas can start forming at 20%. Ugh!

Full Body X-rays

2/2/10: Went for full body xrays today. They took pictures of all of my bones from hear to toe. The Good News is that all of the pictures were clean. There were NO cancer leasions on any of my bones. (This confirms that I am early in this disease.)

It Begins

12/29/09: My yearly physical has shown that my platelets are low for yet another year. Dr. S1 is sending me to the Oncologist for more tests. I will do a 24-Hour Urine test before seeing Dr. S2.