May 2011 - Induction - Cycle 4 - Day 9

Back to the clinic today for a treatment, not much new to report. They did a CBC today and most of my numbers are up, actually all numbers are up but platelets.

WBC	8.8	Up
Grans	7.8	Up
Hemoglobin	14.7	Up
Platelets	110	Down

Talked to the patient coordinator at Rush last week, sounds like we might be sticking pretty close to the dates I posted a few weeks back. She was trying to get everything scheduled and was supposed to call me back last Friday or today, but not to my surprise I have not heard from her yet.

Made a connection with another person in Texas who had a stem cell transplant when he was 44, he is now 52. He gave me a nice outline of how his process went, though it seems to be different for everyone I am hoping the more people I find around my age might give me a better idea of what to expect. I am in the minority, only 3% of the people diagnosed with this disease are in there 40's, the majority of people are 65 and older.

Hope everyone had a nice memorial day weekend. We had two days of rain and one sunny hot and humid day. All in all it was good.

May 2011 - Induction - Cycle 4 - Day 1

Here we go, last induction cycle. It was questionable if cycle 4 would be done due to my good response to the treatment so far, but the decision was made to move forward. The idea is since I don't have many side effects, why not try and beat it down as much as possible.

Met with the local doctor today, he was in a very upbeat mood, cracking jokes and very attentive and not rushed. He told me due to number of questions I normally have, he blocks out 30 minutes for me rather than the normal 15 minutes. That was nice to hear. He was also very concerned about the patient coordinator at Rush not following through and doing what she tells us she is going to do. She was to already contact the local doctor and has not...concerned. Makes second guess my decision to go to Rush for such an important procedure.

Though the doctor did not have all the blood test results from some of Fridays blood test, which I don't understand why they can't get these tests done in time for my scheduled visits. One of the most important aspects of our visit is to discuss the results. So we discussed some of the test results that he did not have from the last visit at the end of cycle 2. Which were all very good. I can't get the doctor to say I am in complete remission, he likes to use the term partial complete remission. Though I think he is holding out for the bone marrow biopsy, which will probably be done in about 3 weeks. If that comes back with 10% or less plasma cells then I might be in complete remission, which is a good place to be in before the stem cell transplant. All in all very positive news, I have to say this is the first time the local doctor gave us hope.

I follow some other blog posts of people with Myeloma, and found a gentleman by the name of Nick who lives in California and receives treatment at the University Medical Center Arkansas, a well known Myeloma treatment center. I had researched and weighed my options of going there myself. Nick is similar in age and has already gone through a stem cell transplant, he is a wealth of information. I have trade e-Mails with him and he answers all my questions, seems to be a great guy. He posted on his blog how UMAS prescribes more of the Revlimid drug than anyone else in the world and the drug is very promising. That is one of the drugs I have been taking and will most likely be on a reduced dose for maintenance therapy after the stem cell transplant.

The doctor made the comment today that I looked physically good and similar to Stephanie's comment people who see me probably can't tell I am sick or going through treatments. They are both right. Other than getting tired at times, I pretty much can do what I want, or should I say anything the boss (Jane) feels is safe. Yard work requires gloves, touch anything or anyone the hand sanitizer comes out. She opens doors for me; which by the way makes me feel like a looser; but I understand why she does it. Hands are the number way germs are passed.

Well back to Iowa tomorrow morning for work, time to get to bed for hopefully a good night sleep.

May 2011 - Induction - Cycle 3 - Day 18

No injections this week or next week. Next week will be my week off of medications except for the dreaded steroid, seems the longer I take the steroid the more it beats me up, mainly affecting my sleep pattern. I can go 24 hours on Monday; usually get at least 4 hours of sleep Monday night; but that eventually catches up with me. This week has been rough on sleep, I drove to Iowa on Wednesday, thunderstorms Wednesday night at 3:00 and a day in Chicago on Thursday. Fell asleep last night at 7:30, Jane woke me up about 9:00 to go to bed and to my surprise told me James Durbin was voted off American Idol, but that is a story for another blog. I woke up at 4:00 this morning starving and had to get something to eat. Usually by the weekend I am back to normal, then start it over again on Monday.

Only had an INR blood test for the blood thinner, next CBC and other blood tests schedule for Friday of next week. Then meet with the doctor on Monday May 23rd.

Yesterday Jane and I spent most of the day at Rush University Medical Center, we had an appointment with the doctor and nurse coordinator to go over a list of questions I had comprised. Our appointment was at 12:00, though I was told to arrive at 11:15 for vitals before we meet. I met my end of the bargain, despite the traffic and going to the eighth level of the parking garage I checked in at 11:16, pretty good. We sat in the waiting room, and sat and sat; the time was 12:30; then shortly the nurse coordinator came out to get us. The doctor had another meeting so his time was limited. The nurse coordinator looked over my list of questions and had the doctor answer the questions she felt she could not answer, then the doctor was excused to go to his meeting. Don't get me wrong, I am not really complaining, the nurse coordinator was able to answer the rest of the questions and was extremely knowledgable. She spent over 2 hours with us and I am sure the time she spent with us might have made her late to other appointments she had. So I can understand why she could have been late for our appointment. I had over 50 questions in an organized document, anyone who knows me well knows that I am a highly detailed and organized person. I spend so much time analyzing and researching, I am continually finding more information to read.

I will highlight a few questions:

Stem cell collection
Question
The standard is to collect enough stem cells for 2 stem cell transplants, which is about 4 million total. I wanted to know if they could collect more and if there would be a benefit to this. My fear here is I have read once I get the high dose chemotherapy stem cells cannot be collected
Answer
The doctor stated stem cells only have a shelf life of 10 years. He also reassured me that in 5 years they could recollect even after the high dose chemotherapy.

Vaccinations
Question
Do I need to be concerned if Lexie just received the chicken pox vaccine or if my niece or nephews have vaccines?
Answer
Chicken pox vaccine is not a live vaccine and there is no concern. What I took away from this is as long as the vaccine is not a live virus there is not a problem. Though I was told I will need to be revaccinated in a year after the SCT.

Hospital Visitors
Question
The hospital sent me information that stated the ward I will be in cannot have any visitors under the age of 12. Lexie is 10, almost 11 any exceptions?
Answer
No exceptions, and the reason why is very understandable. The point that was made is that Lexie might have virus's that I am immune to, but the person one room over might not have that immunity. When Lexie comes to visit she will wait in the family room and I can come out to see her once I suit up with a mask, gloves and gown.

That is just a small sampling, there were many more questions. Probably one of the more important questions was will there be 3 or 4 cycles of induction therapy and what is the schedule for the SCT?

The doctor stated there will be 4 induction cycles, even with my good response. We are just going to keep hammering the bad cells out. So with that information we have a very tentative schedule.

Tentative Date	Step
June 13	Bone Marrow Biopsy Skeletal Survey 24 Hour Urine Test Labs - Complete Panel
June 17	Muga Scan Pulmonary function test Chest Xray EKG ...
July 7	Line surgically implanted in my chest
July 8	Start Neupogen Shots - These shots are self administered and cause the body to start producing more stem cells. I was told these are $23,000 a shot, thanks goodness for insurance.
July 11	Mobilization Shot - Tells the stem cells to leave the bone marrow and move into the blood stream
July 12-15	Stem Cells Collected
July 18	Office Visit
July 20	High Dose Chemo
July 21	Admitted to Hospital

All of these date are very tentative and will most likely be refined or changed, but the steps will most likely be the same.

April 2011 - Induction - Cycle 3 - Day 11

Well it has been a busy couple days, fifth grade orchestra concert Wednesday, fifth grade open house last night...

Went for my last injection for cycle 3 yesterday, counts were down but okay. This injection went very smooth, had our favorite nurse.

WBC	5.1	Down
Grans	3.8	Down
Hemoglobin	13.7	Down
Platelets	131	Down

All counts except platelets fall into the normal category.

I have come up with many questions regarding the stem cell transplant and will be meeting with the doctor at Rush next Thursday to get these questions answered. I do so much research and have so many questions, I am glad the doctor is able to sit down with me and discuss. He knows I have many questions and has slotted a large amount of time for me. I have well over 20 questions. While visiting the doctor next Thursday he has also scheduled some additional labs.

Happy Mothers day to all the Moms have a great weekend.

April 2011 - Induction - Cycle 3 - Day 8

What a nice weekend, no rain for two plus days! Got a lot of walks in, walked 2 miles Saturday, a mile on Sunday and a mile today. Even played tennis for a half an hour on Sunday. It was nice to be out and enjoy the weather.

Back to the clinic today for another injection, my blood counts were surprising very good.

WBC	5.4	Up
Grans	4.8	Up
Hemoglobin	14.6	Up
Platelets	160	Down

All numbers are up since I started treatment except for Platelets.

Treatment Explained
I thought I would describe my treatment to give everybody a better understanding of the treatment. The doctor does not call it chemo, but the nurses do. I have two drugs injected, one is for anti-nausea and the other is a drug called Valcade (Bortezomib). Valcade is a targeted therapy, it prevents cancer cells from dividing, prevents new cancer cells from forming and causes cancer cells to die. Not all people respond to Valcade. Valcade does all this with minimal disruption to normal cells. So no hair loss (but the will happen with the Stem Cell Transplant along with many other side affects), really haven't had any side affects from this medication. The most common side affect is neuroupathy, which I have not experienced either (I hope I didn't jinx myself).

I arrive at the clinic at 1:05 (5 minutes late on purpose to let the waiting room clear out for the 1:00 appointments, otherwise it is standing room only). The clinic and the doctors office is the same place. I then wait in the waiting room for 5-10 minutes and then I am called back to the chemo area. In this area there are about 10 reclining chairs, some patients receiving treatment have a slow drip IV and have to spend 3-4 or more hours getting treatment. My treatment is as follows:

- First I get a stick in the arm and they draw blood for a CBC and sometimes another vial of blood is drawn for a INR test.
- Next saline solution is injected into my vein.
- Then I wait while they run the CBC, if the numbers are too low then they have to find the doctor to decide if treatment is to be given, I only had this problem during cycle 1. The CBC takes takes the most time of the treatment.
- Vitals are checked next, blood pressure, temperature and oxygen level.
- Finally the medications are administered. They use the same stick used for blood draw and clip in the anti-nausea medication, next a little more saline then the Valcade and a little more saline. Takes no more than 5 minutes.
- That is it, the treatment is done.

All this takes about 30 minutes, depending how busy the nurses are. It is really not that bad, not worse than a blood draw, unless...keep reading.

Today's Visit
Today's visit was a little different. First the blood draw was slow, then the injection of the saline started to hurt, I noticed the nurse was having a hard time injecting the saline. I looked down and my arm had a lump where the needle was. I brought this to the nurses attention and she stopped the saline injection and pulled the needle out. This was really uncomfortable for about 5 minutes. The nurse then stuck another vein to inject the medications and all went well. I am assuming the nurse did not pierce the vein completely the first time and the saline was going under my skin instead of into the vein. Anyway all is back to normal now.

Last Thursday's Visit
Last Thursday's visit was a little uncomfortable also the nurse stuck a vein in my forearm instead of the elbow. This caused a little lump for a couple days and a connecting vein turned red. Then a two inch by one inch bruise formed. Looks like Jane has been beating me, though you know that is far from truth.

There are three nurses in the chemo unit, I am starting to pick favorites.

April 2011 - Induction - Cycle 3 - Day 4

Boy I have been crabby the last two days and I know it, seems the more doses of steroids I get in my body the harder I crash. Bless my family for dealing with my crabbiness. The good news is I should be at the bottom of my crash this week and ready for a great weekend.

Back to the clinic today for another injection, while I was there I also picked up some more blood test results. The doctor has not presented these results yet, but I was curious. So here are the unconfirmed results. The blood test I was waiting for was the Lamba Free Light Chain, originally this test was high (7350), the normal range is 5.7 - 26.3. The "unconfirmed" test result from last Monday's test was 17.9! These are some powerful drugs.

Blood test results were pretty good also.

WBC	4.5	Up
Grans	2.8	Down
Hemoglobin	13.6	Down
Platelets	225	Down

It is expected that these numbers would be going down due to the treatments, so no real surprises.

April 2011 - Induction - Cycle 3 - Day 1

Well here we are at cycle 3. We met with the doctor at 1:00 today and I was not sure what to expect at my doctors appointment and was a bit nervous which my blood pressure reading validated this fact; though by the time I received my treatment by blood pressure was back to normal. I also gained 1 pound, which I was told not bad with being on steroids. I was also cleared to play tennis, jog and do pretty much anything I wish, the doctors word of caution was to not hit take an injury to the head. I still need to stay away from sick people, guess who was sick today, you got it the doctor. Wasn't sure if I should have put on mask or ask him to, there was no hand shaking today he said he will shake my hand twice next visit.

Here are test results...Drum Roll Please...Kidney and liver functions are stable. The 24 urine analysis showed no proteins, this number was 4gm when I started and was one of the factors leading to my diagnosis. I said to the doctor that is good news, he corrected me and said that is excellent news, the disease is not detectable in the urine anymore. I asked if I was in complete remission, he did not go as far to agree with this statement, yet. The doctor also did a Freelite test last week, which he did not have the results yet, this test tests for free light chains (fragments of monoclonal proteins) in the blood. This test originally was high (Lambda Light Chain) with a result of 7,350mg/L when the normal range is 5.71 to 26.30. For my next visit he is ordering a Serum Protein Electrophoresis test to check for monoclonal proteins in the blood, similar to the urine test but checks the blood; this test was originally normal. But I believe the reason the test was normal was due to the fact the kidneys were dumping the proteins into the urine. Since the urine shows no indication of the proteins he wants to make sure they have not entered into the blood (I was not smart enough to ask this question when we met with the doctor, but it dawned on me when I was writing the blog entry). We hope all of these tests provide the same result as the urine test.

So what does all this mean? My local doctor will be talking with the doctor that will be doing the stem cell transplant to see if Cycle 4 of treatmenst is needed. If they agree Cycle 4 is not needed then they will be moving up the stem cell transplant. I kind of think why not continue with Cycle 4 to maybe blast out a few bad cells that might be undectible in tests. Though that might just be me conscious trying to put the stem cell transplant off for four more weeks.

Blood test results were pretty good also.

WBC	4.2	Up
Grans	3.8	Up - Almost to 2003 Levels
Hemoglobin	14.2	Up
Platelets	274	Up - Past 2003 Levels

Thanks agains for all the prayers, cards, thoughts and positive energy.