New Post After a Long Silence

I have been taking Revlimid for over a year now. The 15mg pill results is tolerable cramps so that is the one I have been taking. The cramps are directly related to the amount of exercise or excessive usage that I give my muscles. I've stopped jogging but continue walking at a slightly brisk pace. I get leg cramps every once and a while as a result.
.
The good news is that the 15mg pills are controlling the cancer to a great degree. Every blood is basically flat. The numbers are not increasing or decreasing. That is good is the sense that they are flat at a relatively low level. I have had a new blood test in early june and am awaiting the results report.
George

Lower Dose - The leg cramps are gone.

It has been three months since my dosage was lowered from 25mg to 15mg. Good news - blood tests show that the drug is continuing to fight the cancel cells although a little slower than the 25's, and the bad leg cramps have gone away 95%. I will continnue on this dose, have a blood test every two months, and visit with Doc in Oct when we return to PHX.

Started Chemo Treatments Again

About 2 years after my stem cell transplant, the "numbers" were increasing past the point where Doc was worried about kidney damage. He wanted me to go on a chemo routine. There were a couple of drug choices that included IV's and Pills. We chose the pill type because that would allow us to go away for the summer. IV's would require us to stay in Surprise and go in for weekly treatment.
.
So, I started on Revlimid and Dexamethozone (spelling?). Twenty-one days "on" and 7 days "off". Many problems with muscle cramps until we got the dosage adjusted. Now, it's tolerable. I got the good word in early April. The numbers are down and the dosage can stay the same for the summer -  it is OK for us to pack up the RV and get out of Dodge!
.
We plan to hit the road about 5/1. bye

More Treatment May be Coming

Here is some interesting news. We went to the cancer doctor on 3/12 to review
the results of my March blood test. From our last discussion with him, we fully expected
to find another increase in the protien in my urine and to be started on a new round of chemo
using pills.
.
Well to our surprise, all of the indicators being monitored went DOWN! He could not
explain this and decided to wait for an April test to see which direction things are going.
.
Either the February spike UP or the March spike DOWN is a fluke and we have to decide
which before starting chemo.
.
It still appears that we will be able to get away for the summer - he said that the
chemo pills can be perscribed even if I am on the road. I will have to go in for
more frequent blood tests to make sure that there are no (or limited) side effects.

Still Waiting Until October

My monthly blood tests are "stable". They are not without issues, but they are stable and Doc is still saying that we can wait until the 10/18 appointment. So, that's the plan. Going back to Phoenix during the first week of October. bye

Good News and Bad News

Hi - I'm back after a summer delay.
The blood tests continue once a month or so. At first, the rate of increase was alarming. Then it slowed, and even turned down for a month. The Doc said that it is common to oscillate a little. The good news is that he feels I can wait until October to see him, and I do not have to come back to Phoenix early. So, we are staying in Jackson, WY into September and will go back to Phx then. The bad news is that there is cancer activity, and I will have to have more Chemo soon. bye.

New Blood Test Results Not the Best....

My Cancer is a more active than we had hoped. Instead of going for a blood test every three months to monitor the levels, I have to go every month now. Doc wants to see how fast things are changing to determine when additional treatments will be needed. The next test is mid-May. Oh well!

Going Away for the Summer

Sorry for the silent period since December. That's indication of how well things are going.
I have been going for my blood tests every two months and the results so far are very good. The Doc says that the cancer is not in full remission, but the activity level is so low that treatment is not recommended at this time. In fact, we are going to change the blood test timing to every three months, and we are going to get back on our summer RV schedule. This year, we have arranged for a job in Jackson Wyoming. We will work three days a week in exchange for the campsite and services. We will work in the office taking reservations. I have my last blood test scheduled for 4/13 before we leave. I will post more then. bye George

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.......
.
"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."
.
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