This first cycle has been completely uneventful, thank goodness. The infusion consists of a bag of saline solution and a quick shot of Velcade into the catheter; no sweat.
I looked at some other myeloma blogs and other sources and it looks like the main concern will be peripheral neuropathy, where my feet and hands will start going numb or become painful. I've got a little numbness now in my toes from the earlier Revlimid I think, but it's no problem. I've been warned to let the onc know as soon as it starts to spread so they can reduce the dosage.
It seems that the side effects of Velcade start about the third or fourth cycle as it accumulates. Maybe it won't be too rough...
Cycle 2 starts Monday.
It's Ba-a-a-ck! - November 18 thru December 5
Well, crud. I had hoped (and expected) to get several years of remission out of the stem cell transplant done in May, but the monster has reared its ugly head already. When I had the 3-month followup back in August, everything looked good. But at the 6-month followup a couple of weeks ago, I was told that a couple of lab results are now out of the normal range, in essence showing that the myeloma has already started progressing. I need to start a drug therapy, and I won't be able to have another transplant using my own stem cells although there is a slight possibility of a transplant using a donor's stem cells in the distant future. I think a match is very unlikely and that procedure is pretty risky to boot. So for now I'm concentrating on the drug therapy.
So Monday I start getting a twice-weekly infusion of a drug called Velcade. I go for two weeks then get one week off for recovery. It may not technically be labeled as a chemotherapy but I'm calling it that. It has a lot of the possible side effects like chemo, except that I won't lose hair. It's called a "proteasome inhibitor" and causes cell damage. Somehow normal cells recover but cancer cells die, in theory. Actually the response rates look pretty good in a couple of studies I've read about, but the complete remission rate is pretty small. The plan is to knock back the myeloma with Velcade, then try to contain it with Revlimid. I took Revlimid for about six months prior to the transplant and the results were very good with few side effects. No one knows how long I'll be on the Velcade but it's apparent that it will at least three months and probably several more months after that.
This is really frustrating since I'm now feeling the best in almost two years, with no pains and a lot of my strength and energy coming back. I'm just hoping this stuff doesn't cause too many problems and I can travel and do some work around the house. So the fun starts Monday. I'll write up anything interesting that happens. Check back later!
So Monday I start getting a twice-weekly infusion of a drug called Velcade. I go for two weeks then get one week off for recovery. It may not technically be labeled as a chemotherapy but I'm calling it that. It has a lot of the possible side effects like chemo, except that I won't lose hair. It's called a "proteasome inhibitor" and causes cell damage. Somehow normal cells recover but cancer cells die, in theory. Actually the response rates look pretty good in a couple of studies I've read about, but the complete remission rate is pretty small. The plan is to knock back the myeloma with Velcade, then try to contain it with Revlimid. I took Revlimid for about six months prior to the transplant and the results were very good with few side effects. No one knows how long I'll be on the Velcade but it's apparent that it will at least three months and probably several more months after that.
This is really frustrating since I'm now feeling the best in almost two years, with no pains and a lot of my strength and energy coming back. I'm just hoping this stuff doesn't cause too many problems and I can travel and do some work around the house. So the fun starts Monday. I'll write up anything interesting that happens. Check back later!
Dismissed - June 29
June 29th was my "dismissal" day, the last appointment with the BMT team before being handed back to my oncologist for further management. However, I have to return in mid-August for a full round of tests, identical to all they did before they accepted me. This includes the always-fun bone marrow biopsy. I already dread it. Then I return every year for the same round of tests for the next six years.
Unless something unusual comes up, this will be the last entry. It's been an experience...
The End is Near - June 19
I mean the end of the transplant process is near: I'll be released on June 29th to my oncologist and I have only one more appointment before then to remove my catheter. My energy has improved a lot and I'm eating a lot better too so life is becoming a little more normal. I'm still in isolation for a couple more months unfortunately but other than boredom it's not too terrible.
A note for any readers who are blood donors: the platelets that I received during my treatment came from Atlanta Blood Services. They are always looking for platelet donors, so give them a call at 404-459-8744. They're located across the hall from BMT and I think they are associated with each other.
A note for any readers who are blood donors: the platelets that I received during my treatment came from Atlanta Blood Services. They are always looking for platelet donors, so give them a call at 404-459-8744. They're located across the hall from BMT and I think they are associated with each other.
Recovery Cont'd - May 24 thru June 6
There's not a whole lot to write about except the continued recovery from the chemo and transplant. The lab results usually improve day to day, and the clinic visits have been cut to two per week now and I stay about three hours instead of six as before. Some energy is returning slowly and my appetite is also returning slowly. The only new therapy is a pulmonary deal where I go in once a month to prevent a type of pneumonia from developing.
It's now been 30 days since the transplant and everything is going as well as could be hoped. Sometime between now and Day 50, I'll be released from the clinic and back to my oncologist. But I'll still be in "isolation" until Day 100 I think. I guess a more normal life will start then, I hope.
It's now been 30 days since the transplant and everything is going as well as could be hoped. Sometime between now and Day 50, I'll be released from the clinic and back to my oncologist. But I'll still be in "isolation" until Day 100 I think. I guess a more normal life will start then, I hope.
Recovery - May 17 - 23
It's always something... This started as a routine week, with six hour office visits and feeling tired and no interest in food. Then I got the results from a sinus drainage sample they did several days ago because I was coughing and blowing so much. Turns out I have the flu, so now I'm being isolated there in a little room all by myself. And Margie got the flu from me and she's banished from the office totally. We're both on the downside although Margie's still coughing badly.
The good news is they gave me a break from clinic visits on Sunday and Memorial Day so it was really nice to sleep late. Next week should be more of the same.
The good news is they gave me a break from clinic visits on Sunday and Memorial Day so it was really nice to sleep late. Next week should be more of the same.
Post Transplant - May 10 thru 16
Everyday this week was identical. The clinic checked several blood markers and based on the results I would get blood or platelets or something else. And I always get two bags of saline solution, with each bag taking three hours so the minimum time sitting around is six hours. Fortunately they have recliners so you can sleep or read or watch tv. Still it's really boring.
During the week I was completely wiped out, especially in the morning. Also I was still fighting the nausea and zero appetite. But very slowly things seem to improve.
During the week I was completely wiped out, especially in the morning. Also I was still fighting the nausea and zero appetite. But very slowly things seem to improve.
Heck Week - May 3 thru 9
I planned to call this Hell Week but it wouldn't have lived up to the name. I had the big dose of chemo on Monday which was no big deal except I was told to keep my mouth full of ice the whole time. I had heard this before; it slows down the blood around the roof of the mouth and prevents the poison from causing as much damage to the surface. And it worked; I've had no mouth sores at all. The second day was ok, except the nausea and vomiting started. Wednesday I checked into the hospital for the transplant, which was identical to getting a blood transfusion. However, due to all the nausea and vomiting they kept me overnight until it settled down some. I was really drained of energy and had no appetite. I had to go to the clinic every morning to get a couple of bags of fluid but they gave me a little more energy. Meantime, I was fighting the nausea and vomiting with several different pills, none of which worked perfectly but they sure helped.
Harvest Time - April 27 thru May 2
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.
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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