I am a three time relapsed Multiple Myeloma cancer patient. I don’t know any four time relapsed MM patients. MM is the medical terminology for bone marrow cancer. MM cancer begins in plasma cells, a type of white blood cell. These cells are part of your immune system, which helps protect the body from germs and other harmful substances. In time, plasma Myeloma cells collect in the bone marrow and in the solid parts of bone to become plasmacytoma. Plasmacytoma is plasma cell Myeloma as a single lesion or tumor. When the plasma cell Myeloma develops into multiple lesions it becomes Multiple Myeloma. Often MM symptoms go unnoticed, delaying a Myeloma prognosis.
Multiple Myeloma is what is called an orphan cancer, meaning very few people have it. About 20,000 people receive a MM prognosis every year. About 10,000 people die from Myeloma bone cancer every year. Approximately 120,000 people in the U.S. have MM cancer. No one knows the exact causes of Myeloma bone cancer or why plasma cell Myeloma forms. An MM prognosis is more common in older people and African-Americans.
This extremely deadly form of cancer has no known 100% cure. However, if caught soon enough with proper cancer treatments available today many MM patients can lead fairly normal lives by using various FDA approved medications that are proving to be very successful in the containment of the plasma cancer cells and control of MM symptoms.
I was diagnosed in July of 2003. However, the first indication that MM was present was in my first annual physical in 1999. A spike in the protein level of my IgG (immunoglobulin). The spike continued through the 2000 and 2001 annual physicals. I asked, at that time, my primary care Dr. about the spikes, his response was...don’t worry about it. Fortunately he retired. I had copies made from his files of all of the medical records that I had accumulated over the years.
The first thing my new, and current, primary care Dr. looked at was the 1999 annual physical. He asked me about the spike in the IgG protein. I told him I didn’t know what it means. He recommended that I do a 24 hour urine sample. I did. The results came back with the test result showing the presence of the Bence-Jones protein. (A Bence Jones protein is a monoclonal globulin protein or immunoglobulin light chain found in the urine, with a molecular weight of 22-24 kDa. Detection of Bence Jones protein may be suggestive of Multiple Myeloma or Waldenström's Macroglobulinemia.) My primary care referred me to an oncologist right away.
I had a consult with him. His explanation of the presence of the Bence-Jones protein was it could be that the protein is just there, or it could be a precursor to Multiple Myeloma. The only way to find out what the presence of the Bence Jones protein meant was a bone marrow biopsy. Three pretty scary words. I was also scheduled to have a bone survey to see if there were any lesions on my bones. A bone survey is a complete set of x-rays of every bone in the body, top of the head to end of toes. The biopsy was quick and painless. I was knocked out for the whole procedure. There were about five nurses and several others who assisted. Two days later the oncologist called me, yeah he called me, and said that I should come into the cancer center and that we would discuss the test results. I saw him the next day. He told me that the biopsy did show the presence of the Myeloma cancer cells. Shocking? Yes. Scary? Yes. Especially when the Dr. told me there is no known cure.
About the middle of the 90s, the MM researchers had sent out a notice to most of the pharmaceutical companies telling them they need a medication that would do this, this and this. The pharmaceutical companies responded with...that drug already exists, it’s called Thalidomide. At that time there was only one FDA approved oral chemotherapy drug on the market...Thalidomide. Yeah, that Thalidomide. It had been banned worldwide since the very early 60s. The makers of Thalidomide, who were in Europe, were trying to get the FDA to approve it as the vast amount of users was enormous here in the U.S. Fortunately the FDA had just appointed a new FDA Executive Director, she said no way is that medication going to be prescribed for anyone through any pharmacy in the U.S. She told the pharmaceutical company that it needed more extensive testing. The drug was used by pregnant women so they could get some sleep while dealing with their pregnancy. Unfortunately not enough testing had been done, when suddenly there were continuous births of children with horrible birth defects. Over 8,000. The common drug used by all of these women was...Thalidomide. It was immediately banned worldwide.
The National Cancer Institute and the MM researchers went before congress to ask for a chance to do a trial study to see how effective Thalidomide was. Congress approved the MM team’s request to do the clinical trial, but the Thalidomide had to be tightly controlled. After the clinical trial ended the test results showed that Thalidomide was effective in about 70% of the patients, if the MM was caught soon enough. An astounding response to a clinical trial. Congress approved prescribing Thalidomide but again, very tightly controlled.
After my oncologist told me about the Thalidomide he said he wanted to be aggressive with it. He prescribed 10mg of Thalidomide every day. In order to get the medication started there were several consent forms that had to be signed, most dealing with do not allow women who are pregnant or could become pregnant to share the Thalidomide.
The bone survey results came back to my oncologist, but my family and I had taken a trip back to the mid-west to visit my mother. The oncologist, before we left, asked for the telephone number of where we could be reached. Wow! He actually called the hotel where we were staying. He called and told me that the bone survey showed no lesions. He told me I was lucky as we caught the MM in its early stages.
I took the Thalidomide for about two years, then my test results showed that the Thalidomide had reached a level that it wasn’t quite within the range of the test numbers. My oncologist then prescribed a steroid called Dexamethasone, 40mg once a week, that I was to take in conjunction with the Thalidomide. Wow, what a steroid! Dex, as it is known by MM patients, immediately started bringing the test results down to a lower level. Good news.
After about five years of the Thalidomide and Dex combination, my oncologist said the test results were now showing that the Thalidomide and Dex cocktail wasn’t effective any more. He recommended a recently FDA approved medication for MM patients. It is called Revlimid. Rev. is a derivative of Thalidomide. I was prescribed 10mg a day, every day. I also continued with the Dex. There was another drop in the level of MM cells. I took the Rev/Dex combo for about five years. Then its effectiveness leveled off, just falling a few levels above the high end of the test results.
There were no more FDA approved drugs at this time. Then my oncologist who I had been seeing once a month retired. Not only was he a great Dr., he was also a really great guy. I was bummed when he told me he was going to retire. In the ten years of seeing him once a month we found we had a lot in common from politics to religion and about any topic we would discuss. After a while the nurses would have to knock on the exam room door and tell him he had other patients he had to see. Drs. need to see a new patient every 9-14 minutes.
I was now provided a new oncologist who immediately sent a request to my healthcare provider to send me to a specialist outside of our insurance coverage. The request was approved. I met the Dr., a young man and very knowledgeable about MM, at a local cancer center. He is an acute lymphoma specialist. He told me the only method of fighting the MM at this point was to do a Stem Cell Transplant. Three more pretty scary words. He tried to reassure me that this procedure was routine. Yeah right. Routine for doctors and staff, but as far as I was concerned it wasn’t routine for me.
Three days after the discovery of MM I was told I had atrial flutter. Not good news. There were four ways of dealing with the A-fib. Drugs, shock the heart into regular heartbeat, leave it alone, or put a small device that would go into my heart and scorch some nerves, an ablation procedure. Told the cardiologist I would have to think about it, as I was still trying to wrap my head around the Myeloma. Good thing I did, as my primary care called and said he had sent me to the wrong cardiologist. OK. The flutter was first picked up by another cardio Dr, from our old insurance plan. I was prescribed a drug called flecainide. After about three weeks to try to figure out which a fib procedure to do, I was told to go see the new cardio guy. I did. He did three EKGs and couldn’t pick up the flutter. He asked me when I started taking the flecainide. I told him about a month ago, he said sometimes meds take a little time to kick in. He told me to come back in three months for another check-up. He reduced the number of flecainide tabs. I have no problems with A-fib.
After the first meet with the MM specialist, a consult, as I was leaving the exam room, the Dr’s. words were “Tom you’re not supposed to be alive.” I laughed and said...thanks, I think. So far I had beat the life expectancy from seven to ten years.
I did a 14 and a half week pre-stem cell transplant routine of heavy duty oral drugs and sub Q injections of MM killer drugs. Sub Q injection means directly into the stomach. Plus, a drug, Neupogen and very expensive, that helps produce white blood cells. Also by sub Q injection. On top of this I am a Coumadin user, and you can’t take Coumadin and do a stem cell transplant. I had to bridge, switch, to a drug called Lovenox, twice a day by sub Q injection. I also had a battery of tests to do in order to make sure I am ready for the procedure. Balancing Dr’s. appointments and tests with a lot of Drs., and trying to time them with not getting to far away from the bathroom was challenging. I dropped 20 lbs during this procedure. Just not hungry.
Around the first part of December 2013 I was given the big chemo blast to kill my entire immune system. No pain. Just a long four hour procedure. I was told to chew on crushed ice so the chemical taste would not be so bad, it worked. The next day I was admitted to the Cancer Center where I was hooked up to a machine that collected stem cells from the blood. I had a port coming out of my right shoulder area. I was hooked up to the machine. After about three hours the first day, the machine stopped working...not good. I was done for the day. But had about three more days of collection. When I showed up the 2nd day I asked the nurse if the machine we were going to use was the same one we used the day before. He said no and that he had swapped it out for the one in the next room. A person needs a minimum of 2 million stem cells to do a transplant. The specialist told me I may not be able to produce that many as I had taken Thalidomide and Revlimid for over 10 years. After the three days of collection I produced 3.2 million stem cells. The transplant was on.
I was admitted to the hospital on about the 4th of December. The comedy of errors started then.
My wife and I had to be at the hospital at 2 p.m. in order to get checked in. Seemed reasonable. We were finished with all of the paperwork by four. Lots of paperwork when a new patient is being admitted for a stem cell transplant. We were shown to my private room, as all SCT patients are to receive. All patients on this floor were SCT patients or bone marrow transplant patients. The floor has its own ventilation system to keep out, as best as possible, all of the WMD.
I hadn’t had anything to eat since early morning. It was now 5 p.m., then 6 p.m. then 7 p.m. then 8 p.m. I’m really hungry. Nobody had stopped by to see if I was hungry. I finally pushed the little red button on my hospital bed to get some action. The nurse at the nurses’ station said she would connect me with the kitchen. She did. A very upset kind of voice answered and said he would send up some food. It arrived. And before I could say take it back and warm it up, the dude was out the door. Cold mashed potatoes, cold gravy, cold green beans and a cold slab of roast beef. I ate the cold mashed potatoes and gravy. In hindsight I should have called down to the kitchen and told them to get their butts back up here and heat this tray up. I was not a happy camper.
The food I was given for each meal tasted like it had too much salt. Nobody told me that the chemo blast might affect your taste buds. It did. After a few days of this, I couldn’t handle it any more so I subsisted on grilled ham and cheese, grilled cheese, ham sandwich, cheese sandwich, even the milk tasted like it had salt in it. My breakfast every day, was milk with frosted flakes. I dropped another 20 pounds while in the hospital for 20 days.
The re-infusion of my own stem cells took place on December 5 and 6. A really great infusion expert handled the re-infusion. Not much to it, warm up my stem cells, make sure all of the code numbers were the same, hook them up to the port, hang it upside down so the whole thing is gravity feed. Talley ho. I was closely watched for the first 48 hours to make sure there were no side effects. There weren’t.
I was a model patient. For a while. Several nurses would stop by on their breaks and I would discuss the wide world of the web with them. Since I had retired as Vice President of Marketing for a leading web development team that developed high end web sites for law firms the nurses listened to every word. It didn’t hurt for me to discuss this as I was pretty much out of it. Every morning at 8 a.m. I was given what I call a “pepper upper.” Called Ativan. Every four hours, yeah I took advantage of it. I am also a Coumadin person, but one cannot take Coumadin and have a SCT. I was bridged to Lovenox. (Lovenox is a needle in the stomach, twice a day. My stomach was black and blue as I had to do Lovenox injections twice a day for two weeks prior to admission to the hospital.) However, the next big surprise came when the staff said I could no longer take the Vicodin for the three compression fractures pain in my lower back. It has acetaminophen in it. I would have to take oxycodone. The nurse asked me if I had any pain coming on, to let him know. My response was “Yes.” I said yes I could feel pain coming on as we spoke. Oxycodone was in my hands in five minutes. Ativan every four hours, oxycodone every four hours. I had it worked out, repeat drugs every two hours and I’m out of it. Made my boring days much more pleasant.
Then the comedy of errors began to really happen. Totally unexpected by me.
After the infusion of my stem cells, I was told to get out of bed and walk around the floor level I was assigned. Bad idea as far as I was concerned. Even though the floor was dedicated to transplant patients, there were a lot of visitors. All probably contagious with some type of WMD. So I walked around my room. Each patient had their own private room.
I was hooked up to a monitoring device 24 hours a day. I called it “my robot.” Then occasionally another device was hooked up, another robot. The first robot took blood pressure, temperature and pulse. After about a week a nurse came in to take my temperature. 100.1. I told her that was kind of low, so she took it again, 101.5, which sounded a little closer to reality than the 100.1. I told the nurse that the 101.5 sounded a little closer, then I asked her which one was she going to use. She said let’s use the lower one. Huh!? So she did.
This robot thing lasted for the entire time I was in the hospital.
One day the nurse came in to take my temperature. I had her take it three times from the same robot. None of the three were the same. I told her to go get another robot, she did, again three different temps. Completely different from the first three. Then I told her to get a third robot and leave the first two in the room so they wouldn’t get confused. Again three different temperatures, all different from all of the others. Nine different temperatures with three different robots. I asked the nurse which temp she was going to use, she said she didn’t know. Didn’t know? Huh!? I joked with her about a “service contract” with these robots, she didn’t get it. She left the room in a huff. I never did find out which temperature she used.
After about four days, I decided I wanted to take a shower. Each room has its own shower. I called the nurse, told him I wanted to take a shower. He said he’d be right there. About five minutes later he walked in carrying what looked like a large Target zip lock baggie and a roll of paper tape. I asked him what’s with the baggie. He said it was to cover up the port. Ports are not supposed to get wet. I said you’re kidding me. He said no and began taping this un-sterilized Target baggie to my chest. I was stunned. I asked him if there were any adhesive patches that were specifically made for this type of issue. The nurse said yes but they were extremely expensive. Extremely expensive?! At this level of care?!
The next day the specialist who made the rounds each morning came in. While she was checking me and my chart out I told her about the three different robots and the nine separate temperatures. She didn’t seem too interested. Especially when I told her I thought it would be a good idea to check the contracts when purchased to see if there was any kind of “service agreement” attached to the contract. She laughed and left the room without answering or even acknowledging my question. I was not pleasant with her for the remaining time I was in the hospital. Blow me off like that is not a good idea.
Next...My hair was beginning to fall out, so I called the nurses station and told them time to shave my head. The male nurse came in and said the shears had been stolen. What? Stolen? He said yes both pairs. I told him they were probably at the Spring Valley Swap Meet, and we both laughed. Fortunately I had brought my electric razor with me. It is not set to trim hair on the top of the head, just shave and trim sideburns. We used it. Stolen hair trimmers, from the hospital, crazy. Give me some more Ativan and oxycodone, quick.
No problem with diarrhea or nausea. They have meds to help with everything. If I ever felt either of these coming on, just push the little red button.
All beds were hooked up to a monitoring device that had an alarm so if a patient fell out of bed, the nurses would come running. I was never that close. However, when one has to use the bathroom, one has to push the little red button. Sometimes I would cut it kind of close. Even a matter of a couple of minutes. If I had to wait more than 30 seconds I’m out of the bed, grabbing my robot and heading to the bathroom, setting off the alarm. Did I care? No. When you have to go, you have to go. The nurses finally got it. Hedges will head to the bathroom as quickly as possible. No accidents in my bed.
Hospital beds are not comfortable. My wife and a friend went to a home medical supply and bought me a very comfortable mattress the same size as my bed. The nurses were astounded. They had never thought to tell the patients that this is an option. OK. I started something.
Actually I started a lot of things in my room. The long conversations with the nurses after midnight. Guess I was the only one who could speak “nurse.” sort of a...tell me about your troubles with your husband or boyfriend. I should have been charging them by the hour. But full of Ativan and oxycodone certainly helped me get through the conversations. Just nod my head yes and no. Oh, and could you get me another oxycodone, I feel some pain coming on.
I finally realized I didn’t have to order my next day’s meals from the iTab, or whatever they use to tell me my options for meals the next day. Pizza was never mentioned. So I told the menu person I wanted some pizza for lunch. Bad idea on my part, it gave me severe diarrhea issues. But like I said, there is a powerful med for everything at the hospital. But the pizza, with everything tasted great.
After about 15 days in the hospital I was beginning to think I wouldn’t be released until after the New Year. Much to my surprise the Dr. who did the rounds told me I had an infection somewhere, somewhere? Huh!? And that they were going to try a third antibiotic with a little broader spectrum to kill infections. Yeah, broader spectrum, bring it on. It worked. I woke up about 2 a.m., after three days, in a cold sweat. After I pushed the little red button the nurse said this is great as your fever has broken. The Dr. told me if my infection was permanently gone in three days I would be released. It was gone. I came home on Christmas Eve. Best Christmas present I ever had, or will have.
After release from the hospital I was still on the Lovenox. The specialist told me he would prescribe some more. The pharmacist called the next day and asked me if I wanted to fill the prescription for Lovenox. I asked him what the co-pay is. He said $4,000. I told him don’t fill it. I immediately called my primary care. He said let me take care of it right now. About ten minutes later the special care pharmacy called and said they had the Lovenox ready. I asked about the co-pay, the fellow said it’s free. Huh!? Free!? He said yes, and then asked me if I wanted to have it delivered...I said, of course. He was at my front door in about 15 minutes.
I continued to see the specialist at the cancer center weekly for the next three months. Labs were done once a week. The labs always had good test results. I was put on a maintenance dose of a drug by sub Q injection every week.
Two new meds had been approved by the FDA in about July of 2015, fortunately as the stem cell transplant was not working any more. One of the new meds was by sub Q injection...I rejected it right away. The other was another derivative of Thalidomide. Pomalyst. I selected it. Within three months my monoclonal (myeloma) protein count went from 0.8, high end of the spectrum, to “no monoclonal proteins detected.” Meaning the MM cells are still there but the sophisticated test can’t find them. Ha. Ha. Kind of like “hide and seek.” This same test result has been ongoing for the past five months. However, my platelet count has been low, my daily dose of the med, a 1mg capsule, was reduced to one capsule every other day.
I also have an immunoglobulin infusion, 25gms per day, once a month. To help my immune system. The infusion is a two day effort. The first day I also receive a Zometa infusion and a B-12 shot. The infusions take about 4 hours.
I continue to see my oncologist once a month. Labs once a month. So far so good, April 25, 2016.
I am a member of the San Diego Multiple Myeloma Support Group. Our Support Group is under the umbrella of the International Myeloma Foundation, (IMF) www.myeloma.org. If anyone has any questions about Multiple Myeloma there is a toll free number on the IMF web site.
The Support Group meets the second Monday of each month. Membership in the Support Group is free for all patients, family members, caregivers and guests. We always have a guest speaker who will have MM as their topic. Guest speakers have included Dr. Brian Durie, Executive Director of the International Myeloma Foundation, an attending physician at the Cedars-Sinai Medical Center and the Director of Myeloma Research for AMyC Consortium; Dr. Morie Gertz, Chairman, Internal Medicine, Hematology and the Transplant Center, at the Mayo Clinic in Rochester, Minnesota. The Support Group has also had Dr. Alberto Bessudo. Dr. Bessudo's areas of interest include tumor immunology, lymphoma and lung cancer. He is a staff member at Scripps Hospital in Encinitas and La Jolla.
For the past three years I asked my city council representative to declare a day in March to proclaim March is Multiple Myeloma Awareness Month. My council member made it happen. You can see the 2014, 2015 and 2016 videos of the city council meetings HERE.
For the 4th year in a row I submitted the forms to the “San Diego Business Journal” to participate in their annual HealthCare Champions Awards. For the fourth year in a row the San Diego Multiple Myeloma Support Group was recognized as a Finalist.
One last piece of advice...You need to start getting an annual physical...now.
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