Monday: And we're o-f-f...oops. My WBC this morning was much better but they decided to check the stem cell level in the blood and it was borderline. So the harvest has been delayed a day. No big deal; I would rather have higher levels and maybe less time on the machine. We'll see how it goes tomorrow.
Tuesday: This time it's for real. They put me in a recliner, one of about a dozen in the room. Four are for stem cell harvest, the others are for platelet donors. There is a big machine that processes blood at every recliner. Besides the tubes that move the blood to and from the machine, there are several drip bags of fluid and medicines. But with the catheter there is no pain or any problems, except one. It seems they really want to keep you hydrated, which means they pump fluids, which means that you have to pee about every hour. And they will not unhook you from the machine once it starts. The only solution is to pee in their plastic container. They are discreet enough to pull a curtain around you, and they empty the container for you. Everybody knows exactly what's going on, but nobody cares. The harvest process takes about three hours so there's a lot of peeing happening.
Wednesday: Yesterday's results were not very good, so I'm back on the machine. Crud.
Thursday: And Wednesday's results were not even as good as Tuesday's. Apparently the chemo that I took earlier is causing problems. I got a call in the afternoon that they had ordered a brand new drug that really pushes the cells out for harvest. Why didn't they do this earlier? It probably has something to do with the six thousand dollar ($6,000!!!) cost per dose. And a dose is only 1.2 ml, probably about a teaspoonful. And I have to give it to myself.
But the fun part was that the pharmacy refused to give the drug to me. Seems they didn't get the insurance authorization. So after we wait around for about an hour until after 5 pm waiting for them to talk to somebody, Margie gets pissed, goes to the pharmacist and calmly explains the situation to him, along with the inference that neither of us is leaving without the drug. He gave up, we got the drug, and Margie is the Hero of the Week.
Friday: The harvest on Friday morning was greatly improved, but not quite enough. So we go back to the pharmacy to get another $6,000 dose but with absolutely no problem for the pharmacist. I guess he knew who he was up against and surrendered this time.
Saturday: The clinic operates 7 days a week, so the collection continued. But that afternoon I got the call that the drug worked again and I was finally finished, thank God. The harvest process is actually very easy. I just lay there and read a book. Others watched tv or one of their collection of dvd's on portable players. After about 3 hours, they unhooked me and sent me home. But it was amazing how wiped out I was every afternoon. I slept off and on (still peeing every hour) from lunch until dinner, and then slept through the night with no problem.
Next week: Showtime. High dose chemo Monday, stem cell reinsertion Wednesday.
An Easy Week - April 19 thru 25
Only three visits to the BMT Group this week for bandage changes and lab tests. I get to stay home, constantly. I'm now considered in isolation since my white cell count is down from the first chemo. I can leave the house but not go to any public place like a store or restaurant, can't do any inside or outside gardening, contact anything with a remote chance of having germs, or have visitors, germy or not. Also I can't eat anything raw (apples, celery, etc.) unless it's thick skinned like bananas or oranges, nothing prepared outside the house unless it's packaged or pasteurized, and everything at home has to be well cooked. Kinda boring... But Margie has been wonderful, both keeping me from wandering outside of the restrictions and making sure I eat well. So far, no appetite problems.
To add excitement, I get to give myself two injections twice a day into my gut fat. Fortunately there's plenty available. One shot is something I've done before called Lovenox that just keeps clots from forming. The other is Neupogen, that's supposed to restore white blood cells. At the cost of about $350 a shot, it better work. I get to draw it out of a vial and do all the things a nurse does to give a shot (right dosage, no air bubbles, look for blood, etc.), and if I screw it up it gets discarded . This goes on for seven days, twice a day. Do the math...and hope I don't mess up. (So far, ok.)
Friday: Uh-oh... The white blood cell count is still low, and it's got to be high to do the stem cell collection. They'll check again early Monday and if it's ok then they'll start. Otherwise, I'll continue on the Neupogen until it works. This could delay things a little bit.
A mild fatigue has reappeared over the last couple of days, and I'm wondering if it's related to an antibiotic that I recently started. I'm assuming that I'll be on handfuls of prescriptions once the action starts. Sure hope I don't get too wiped out by it all.
To add excitement, I get to give myself two injections twice a day into my gut fat. Fortunately there's plenty available. One shot is something I've done before called Lovenox that just keeps clots from forming. The other is Neupogen, that's supposed to restore white blood cells. At the cost of about $350 a shot, it better work. I get to draw it out of a vial and do all the things a nurse does to give a shot (right dosage, no air bubbles, look for blood, etc.), and if I screw it up it gets discarded . This goes on for seven days, twice a day. Do the math...and hope I don't mess up. (So far, ok.)
Friday: Uh-oh... The white blood cell count is still low, and it's got to be high to do the stem cell collection. They'll check again early Monday and if it's ok then they'll start. Otherwise, I'll continue on the Neupogen until it works. This could delay things a little bit.
A mild fatigue has reappeared over the last couple of days, and I'm wondering if it's related to an antibiotic that I recently started. I'm assuming that I'll be on handfuls of prescriptions once the action starts. Sure hope I don't get too wiped out by it all.
The Fun Begins - April 16 & 17
The first step was to get a catheter into a large vein under my collarbone so the blood can be removed and stem cells harvested. To do the collection, blood is sent through a centrifuge to extract the stem cells that reside in the marrow but are migrated out to the blood stream with drugs.
Thursday, I was sent to an operating room at the hospital, put under anesthesia, and awoke to find a tube hanging from my chest, and three more tubes with colored tips hanging from it. The doctor had pushed the catheter under the skin to a spot just under my collarbone and somehow attached it to a vein. The three tubes hanging out are to allow drugs and blood to be easily accessed at the same time. It feels odd but there's no pain, and the only problem is showering. But a big piece of Glad Press 'n Seal and some tape works well to keep the bandages dry. So I was ready for the first chemo on Friday.
Apparently this drug causes problems with the bladder lining, so the first thing they did was pump 3 hours worth of fluid into me, then the chemo (Cytoxan), then three more hours of fluid. Two days later I'm still going to the bathroom about every hour. The Cytoxan is a mild drug I think, and other than some mild stomach upset has not caused any problems. It's supposed to start the stem cells in the marrow migrating into the blood vessels. There is another drug to push the stem cells that I start on Monday. I already hate it and I haven't even started. More on that later.
Thursday, I was sent to an operating room at the hospital, put under anesthesia, and awoke to find a tube hanging from my chest, and three more tubes with colored tips hanging from it. The doctor had pushed the catheter under the skin to a spot just under my collarbone and somehow attached it to a vein. The three tubes hanging out are to allow drugs and blood to be easily accessed at the same time. It feels odd but there's no pain, and the only problem is showering. But a big piece of Glad Press 'n Seal and some tape works well to keep the bandages dry. So I was ready for the first chemo on Friday.
Apparently this drug causes problems with the bladder lining, so the first thing they did was pump 3 hours worth of fluid into me, then the chemo (Cytoxan), then three more hours of fluid. Two days later I'm still going to the bathroom about every hour. The Cytoxan is a mild drug I think, and other than some mild stomach upset has not caused any problems. It's supposed to start the stem cells in the marrow migrating into the blood vessels. There is another drug to push the stem cells that I start on Monday. I already hate it and I haven't even started. More on that later.
The Transplant Prelims - Jan thru March '09
As my onc had previously planned, in January he started his application to get me into the Northside Hospital (Atlanta) Blood & Marrow Transplant Group. "Application" is an accurate word because they obviously can't take anyone who can't stand the process, even though I've seen several little old ladies there. (Maybe they weren't little and old when they started...h-m-m.) I had my first visit in mid-February finally, when they did the usual history, quick physical, and then explained the process to us. It was a little overwhelming but Margie and I were ready to get started and agreed for them to start the process.
Unfortunately it took until late March for them to get all the preliminary tests lined up. The tests lasted all day (on no breakfast or lunch of course), including skeletal x-rays galore, the always fun CTs with barium, heart tests, some other tests, and the dreaded bone marrow biopsy.
In spite of what I had been told, the biopsy hurt like hell. They pull samples of marrow out of each side of the pelvis and there's no way to stop pain in bones. But they can deaden the general area with Lidocaine, which they first told me would sting like a bee for a minute, then later when I was face down on the table and there were four people in the room they admitted it was more like a hornet sting. Actually it was like a nest of hornets all hitting at the same place. But it was over in a few seconds thank goodness, and it worked. I couldn't feel anything but pressure when they stuck into the first bone. Then they pulled the marrow sample out which sent a shot of pain down my leg that took my breath away. Again it lasted only a few seconds and I almost lived through it. The best news of the day was that they couldn't find a soft spot in the other side of my pelvis (in spite of poking around for a while) so they couldn't pull another sample. What a shame...
At this point I still had not been formally approved for the program, so we went back the next week to get the final approval and sign all kinds of papers. All the tests were ok so I was accepted. We were on the way finally.
Unfortunately it took until late March for them to get all the preliminary tests lined up. The tests lasted all day (on no breakfast or lunch of course), including skeletal x-rays galore, the always fun CTs with barium, heart tests, some other tests, and the dreaded bone marrow biopsy.
In spite of what I had been told, the biopsy hurt like hell. They pull samples of marrow out of each side of the pelvis and there's no way to stop pain in bones. But they can deaden the general area with Lidocaine, which they first told me would sting like a bee for a minute, then later when I was face down on the table and there were four people in the room they admitted it was more like a hornet sting. Actually it was like a nest of hornets all hitting at the same place. But it was over in a few seconds thank goodness, and it worked. I couldn't feel anything but pressure when they stuck into the first bone. Then they pulled the marrow sample out which sent a shot of pain down my leg that took my breath away. Again it lasted only a few seconds and I almost lived through it. The best news of the day was that they couldn't find a soft spot in the other side of my pelvis (in spite of poking around for a while) so they couldn't pull another sample. What a shame...
At this point I still had not been formally approved for the program, so we went back the next week to get the final approval and sign all kinds of papers. All the tests were ok so I was accepted. We were on the way finally.
The Battle Begins - Oct '08 thru Jan '09
With the diagnosis finally determined and my fractured vertebrae cemented back together, I was back to my oncologist for treatment. He was very optimistic about the prognosis, and although I had been a little shocked at the cancer diagnosis I wasn't overwhelmed this time. He graded the cancer at Stage 3, for whatever difference that makes. The standard therapy is to go on an oral chemotherapy for about 6 months to knock down the disease as much as possible, then hopefully move onto a stem cell transplant.
He also arranged for 10 radiation treatments to the repaired vertebrae in hopes of relieving some of the lingering pain. The kyphoplasty had done a great job with pain relief since there was no pressure on the nerves that almost kept me from walking previously. But the MM was still in the vertebrae and causing pain, so the radiation took care of the MM and knocked out a lot of the remaining pain and I was able to move pretty well again.
The primary part of the chemo was a drug called Revlimid, which is a cousin of Thalidomide, a drug that some may remember caused terrible birth defects several decades ago. I was prescribed 3 weeks at a time, then had to call into the manufacturer and answer questions to make sure I wasn't going cause any pregnancies (hah!). Then they authorized a special pharmacist to dispense another 3 weeks worth after I was off the drug for a week. I also was prescribed Dexamethasone which was supposed to improve the effectiveness of the Revlimid and help with nausea.
Ever since the the back pain started I had been on pain meds, mostly Oxycontin. All this and the pain caused a loss of appetite and some nausea, so I lost about 15 pounds (good). But I also could move only delicately for a long time so my energy and strength was severely affected. Finally in January the pain was mild enough that I could stop the Oxycontin, but with some difficulty. I understand drug addicts a lot better now; for me it was both a physical and psychological dependence after about 6 months on this stuff. But that's another story.
The Revlimid worked amazingly well. All the blood markers that the onc was watching went down every month. But I was warned that its effectiveness would last only about 6 months. Then we would apply for step 2 of the process, a Stem Cell Transplant. Scary!
He also arranged for 10 radiation treatments to the repaired vertebrae in hopes of relieving some of the lingering pain. The kyphoplasty had done a great job with pain relief since there was no pressure on the nerves that almost kept me from walking previously. But the MM was still in the vertebrae and causing pain, so the radiation took care of the MM and knocked out a lot of the remaining pain and I was able to move pretty well again.
The primary part of the chemo was a drug called Revlimid, which is a cousin of Thalidomide, a drug that some may remember caused terrible birth defects several decades ago. I was prescribed 3 weeks at a time, then had to call into the manufacturer and answer questions to make sure I wasn't going cause any pregnancies (hah!). Then they authorized a special pharmacist to dispense another 3 weeks worth after I was off the drug for a week. I also was prescribed Dexamethasone which was supposed to improve the effectiveness of the Revlimid and help with nausea.
Ever since the the back pain started I had been on pain meds, mostly Oxycontin. All this and the pain caused a loss of appetite and some nausea, so I lost about 15 pounds (good). But I also could move only delicately for a long time so my energy and strength was severely affected. Finally in January the pain was mild enough that I could stop the Oxycontin, but with some difficulty. I understand drug addicts a lot better now; for me it was both a physical and psychological dependence after about 6 months on this stuff. But that's another story.
The Revlimid worked amazingly well. All the blood markers that the onc was watching went down every month. But I was warned that its effectiveness would last only about 6 months. Then we would apply for step 2 of the process, a Stem Cell Transplant. Scary!
2008: Diagnosis
Hi, and thanks for visiting!
Several years ago someone with cancer said that identifying himself as a "cancer survivor" sounded passive, as if he had lived through a tornado or shipwreck through blind luck. Instead he referred to himself as a "cancer warrior", fighting a determined killer in a lifetime battle. I agree with his point of view, so this is called "A Myeloma Battle."
Actually this blog is for my benefit as much as for anyone else because I know that memories get fuzzy and fade away, especially for me. I want to record what led to the discovery of my multiple myeloma in 2008 and the battle with the disease that will likely go on for several years (if all goes well). But if anyone else gets something out of it, that's even better. Also, this blog will let friends and family check up on the day to day happenings as the battle intensifies and then we're victorious.
Multiple Myeloma is a cancer of the bone marrow, more accurately of the plasma cells found in bone marrow. It causes thinning of bones, anemia, an impaired immune system, and other problems. Somewhere I read that it's very rare, accounting for about 1% of all cancers. There's no proven cause and no quick and easy screening process. The typical symptom is an unexpected bone fracture.
You may already know what led to my diagnosis in 2008, but for others and for my record I'm going to try to remember the main points. It may have actually first appeared in January 2008, when I my back hurt after a long day of standing and bending. The pain lasted for weeks, but I've had back pain before and this seemed just another strain to live through. Then in April, I was on my hands and knees working on a door repair when I got a terrific shot of pain across the middle of my back. This too seemed to be another strain to endure, although it was so painful that my doctor did give me some really nice painkillers.
But a couple of months later, when I had another snap in my back and sharp pain while just sitting in a restaurant, the doctor sent me for spinal x-rays and lab tests, and referred me to an orthopedist. The orthopedist could spot the problem on the x-ray from across the room: I had two vertebrae that had fractured and compressed, affecting the nerves across my back. He performed two outpatient back operations called kyphoplasty where he expanded the vertebrae back to their proper sizes and repaired the fractures.
The first back operation in September was actually to biopsy a vertebra and its bone marrow. During the same period of time, my doctor sent my lab results, which were suspicious, to my oncologist, who ordered even more lab tests. With the lab results, he could rule out most cancers except myeloma. So it wasn't a complete surprise when the marrow biopsy results from the operation came back with the finding of myeloma. And the battle began.
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