Livermore, CA; firstname.lastname@example.org; (925) 337-3142
1962 / Class of '97 / Type: Solitary Plasmacytomas / Diverse treatments / Updated: 3/08
I grew up in San Lorenzo, California. During the WWII years dynamite was made in the area. In addition, I fished for shark out of the San Francisco Bay. My best friendís dad died of Multiple Myeloma. He got the disease about the same time. He also ate a lot of shark out of the San Francisco Bay, and lived four blocks away. Sharks are bottom feeders and I know Intel and the other microchip manufacturers dumped a lot of bad chemicals in the Bay during the early days of microchip manufacturering.
Prior to my diagnosis, my health was perfect. I was rarely sick. My cholesterol was high, but nothing that needed treatment.
I have been treated by: Dr. Curt Ries, semi-retired Chief Oncologist at the University of California, San Francisco; Dr. Larson, Director of Cyberknife, UCSF; and Dr. Weinstein, Director of the Neurospinal Surgery.
I had 7 Plasmacytomas in 8 years Ė 4/97 to 2005. I had excruciating pain in the neck for years. The first tumor surrounded the first vertebra, honeycombed it and a slip had caused the first vertebra to crush a little, enough to tilt my head and lock it in place. Thatís right, I could not move my head. The pain was reduced by radiation and bone-marrow transplants. However, the pain was always present. Iíve had two transplants, my own bone marrow in 1999 and my sister's in 2002. In 2003, I had Cyberknife Radiation treatment and the pain went away for the first time.
In 2004, I had a tumor in the hip, giving me pain down the Sciatic nerve. I couldnít sit for longer than 15 minutes, it hurt so much. Normal Clinac radiation relieved that. My left foot is still numb on the left side. In 2005, I had another tumor in the first vertebra near the spinal cord. I lost control of my tongue. Again, after Cyberknife Radiation Treatment, I could speak and swallow again. Wow, that was a blessing. Both Cyberknife treatments were the only possible treatments for me with those two tumors. The spinal cord in that area had already had a maximum dose of radiation. Cyberknife allows radiation to the tumor without hitting the spinal cord or other important structures in that area.
Although I am pain free from tumors, I have many aches and pains from having my sisterís bone marrow. The side affects of that have been the hardest. Below, I break down the details for each tumor. Note: Iíve had bone marrow aspirations, with the results showing no evidence of Lymphomatous infiltration, Leukemia, Ganulomata, Metastatic Tumor, or Multiple Myeloma. Very unusual, as I understand, to have huge Plasmacytomas and no signs in the bone marrow. I happy for that.
1st Tumor - April 1997
I slipped off a curb, but did not fall. I landed on the sole of my foot. I was carrying two suitcases, one in each hand. That impact crushed the first vertebra enough that I couldnít move my head. I had excruciating pain, couldnít move my head, and didnít know why. I saw doctors and physical therapist for six months. Nobody would do an MRI. They did X-rays, but you couldnít see the tumor. My jaw line blocked the X-ray view of the first vertebra. One quacky doctor did Cortizone injections between the vertebrates, thinking that would help me. Finally, I got to a good doctor. He issued an MRI and they saw the tumor immediately. It was surrounding the first vertebra, partially into the second vertebra and partially into the back of the head. The amazing thing is I had no neurological symptoms. Just my head locked into place. I couldnít move it left or right, up or down. If you looked at my head, it had actually slid to the left and back. Itís that way today. You can see the jaw line is off. BUT, I still walk and talk!!! Dr. Weinstein, Director of Neurospinal Surgery at UCSF, said ďdo you realize the Physical Therapist could have pulled your head off.Ē He couldnít believe I had no neurological symptoms.
Treating Doctors: Dr. Ricardo DaRoza, Oncology, Castro Valley, CA; Dr. Weinstein, Director of the Neurospinal Surgery; Dr. Forrest, Radiation Oncology, Pleasanton, CA
Dr. Forrest treated the area with Clinac Radiation, a dosage of 45 Grey. The radiation hit the nausea center of the brain, so I was a little nauseated at times. In the area of radiation, I had a little bit of sun burn too. Minor side affects. The results were positive. I still had neck pain, but it was reduced and we couldnít see the tumor in the following MRIís.
2nd Tumor - March 1999
I felt a lump in my neck. It was about 1 inch by ľ inch. It felt like a swollen lymph node. A biopsy verified plasma cells. It was another Plasmacytoma.
Treating Doctors: Dr. Ricardo DaRoza, Oncology, Castro Valley, CA; Dr. Curt Ries, semi-retired Chief Oncologist, University of California, San Francisco; Dr. Forrest, Radiation Oncology, Pleasanton, CA.
The doctors decided to radiate the tumor, but it never came about. A 3rd tumor popped up before starting radiation.
3rd Tumor - May 1999
Again, I felt a lump in my neck. It was about the same size as the 2nd tumor, but on the other side of the neck. And again, a biopsy verified plasma cells. It was another Plasmacytoma.
Treating Doctors: Dr. Curt Ries, semi-retired Chief Oncologist, University of California, San Francisco; Dr. Ricardo DaRoza, Oncology, Castro Valley, CA; Dr. Forrest, Radiation Oncology, Pleasanton, CA.
Dr. Curt Ries wanted to be aggressive. Considering my age, 37, and how quickly new tumors sprouted up, Dr. Ries recommended an Autologous Transplant. They used my own stem cells. First, I was given VAD Chemo 4000 ml / 4 days at 42 ml / hr. I had this treatment twice. June 4th to June 9th and June 28th to July 2nd. The hope was the two tumors in my neck would shrink. No side affects, other than I lost four days each time sitting in the hospital. Neither tumor shrank. Dr. Ries expected them to shrink. So, we stopped VAD Chemo and went in for the Autologous Transplant. From August 5th to August 25th I had Cyclophosphamide Chemo which includes or is VP-16. Still no change in the two tumors. Then, on September 21, I received Melphalan. A few days after this, Dr. Ries was worried. There was no change in the tumors. He couldnít believe it. However, the tumors did go away, they just took longer than expected. This treatment is tough. I didnít have as much nausea as most patients. I didnít throw up through the first Chemos. It wasnít until Melphalan. After that, I threw up a few times. Some people were vomiting every half hour for days. I felt sorry for them. All my blood counts went down, whites went to zero. I had a few blood transfusions. Again, not many! Something like one platelets and two red cell bags. I was fatigued for months. Kept away from sick people. I didnít catch anything and the fatigue went away in about six months. I was like new in about 9 months. In addition, I had radiation to the neck again. It was on a Clinac machine from November to December of 1999. The dose was 36 Grey. Dr. Forrest blocked off the spinal cord, so it wouldnít receive too much radiation. The tumors were gone, but the thought was that they came from the first tumor. So again, we decided to be aggressive and try to kill any remaining cells. My neck still hurt. It was like living with a constant migraine headache. The pain was less than at the beginning. At the beginning, any motion sent spikes through the top of my head, very painful.
4th Tumor - July 2001
No change in neck pain for sometime. However, a routine MRI showed the tumor bigger than ever. To solve this problem required a number of doctors consulting. The entire Oncology, Radiation Oncology and Neurosurgery doctors were conferring. The tumor was bigger than ever, less than a millimeter from the spinal cord, I already had maximum dose of radiation to the area (radiation treatment was out), I already had a transplant (chemo was out). All doctors were telling my wife and I "this is it."
Treating Doctors: Dr. Curt Ries, semi-retired Chief Oncologist, University of California, San Francisco; Dr. Ricardo DaRoza, Oncology, Castro Valley, CA; Dr. Forrest, Radiation Oncology, Pleasanton, CA; Dr. Larson, Director of Cyberknife, UCSF; Dr. Weinstein, Director of the Neurospinal Surgery.
This tumor brought about some amazing experiences. One being, the tumor shrank without any medical reason. The neck pain was constant since the last treatment. No real change in pain level. We performed a routine MRI and noticed something. It was hard to tell if it was a tumor, because of the crushed first vertebrate and scar tissue. So, we did a CAT Scan too. In the CAT Scan it was obvious that another tumor was present. This one was bigger than the first one and surrounded the first vertebrate again. Might have extended as far down as C3 and definitely extended into the back of the head. Now the doctors were out of solutions. Dr. Weinstein was talking about cutting out the first vertebrate and rebuilding it. However, this wouldnít get all the cancer cells and, the expectation was, it would grow back after surgery. Dr. Ries had no solutions. Dr. Larson couldnít radiate the area because I already had the maximum dose to the area. Dr. Larson was going to put radiation pellets in the cavity after Dr. Weinstein cut the first vertebrate out. Dr. Weinstein told my wife and I that I should not do it. He would probably kill me and most likely paralyze me from the neck down. He said I should seriously consider living out the rest of my life. I should have six months and three of those good ones. Also, if I survived the surgery, life would be miserable. A ďHalo,Ē pain from recover, etc. The tumor was millimeters from the spinal cord. Still, no neurological symptoms. Just amazing! Dr. Weinstein settled on bracing my head. Putting a bar from C4 up to the back of the head. After this we would see what other doctors could come up with. Then, as a last resort, Dr. Weinstein could do a second surgery and try to cut as much out as possible and Dr. Larson would put in radiation pellets.
Things really changed. Dr. Ries put me on Thalidomide (BLT-D). It took forever to get approval. I started August 14, 2001, and stopped August 17, 2001. On August 10 and August 21, I did an American Indian Spiritual Healing. Iím not into this stuff, but the way this person was brought to me was so coincidental and since I was running out of options, I went and saw him. The healer says God works through him. The BLT-D was stopped because I was starting to have more pain in the neck. On August 20, the pain was so excruciating I had to hold my head. I held my head for three days and three nights, NO FOOD, NO DRINK, NO SLEEP. I had both hands on my head and I pulled up on it to relieve the pain. I was on three patches of 50 mcg/hr Fentanol. It didnít touch the pain.
Surgery had already been scheduled for Friday, August 24, 2001. My wife drove me to USCF E.R. on August 22. After two nights of holding my head. Dr. Weinstein broke from surgery to see me. He asked me to hang on until August 24, since everything was set for that day. I said OK, Iíve been hanging on for two days already. As Dr. Weinstein was leaving he told the E.R. doctor to give me what ever I wanted. The E.R. doctor said ďHeís already on the maximum does of morphine.Ē (They had hooked me up via I.V.) Wow! I felt like I was at the end of life.
That night the nurse gives me a drug to put me to sleep. She was new and didnít calculate for the morphine I was getting. I was sitting at the edge of the bed. When the nurse injected the drug into the I.V., I fell over, falling to the floor. I was holding my head with both hands. Now, I was out falling face first onto the floor. My wife was next to me. She grabbed me, threw me into bed and said ďHeís not breathing, weíre going to have to call a Code Blue.Ē The new nurse froze. My wife scanned the room and grabbed the respiratory stuff. She revived me in a few minutes, then lied next to me with her hand on me chest for the rest of the night. Lucky for me my wife is a nurse. She knew what to look for and what to do!
I had surgery and it went better than ever. Dr. Weinstein put a bar in the back of my head from C4 up to the back of the head. I was walking around at home on Sunday with no Halo!!! Just amazing! Dr. Weinstein wired the bar into C4, C3, C2 and the back of the head. He said C1 was to loose and he didnít want to touch it.
Hereís an even more amazing part. We have an MRI from August 3, 2001 that shows the tumor bigger than the first one, surrounding the first vertebrate, into the head, and into C2. On August 23, 2001 another MRI was taken, so the doctors could do the geometry for the brace. However, this MRI shows the tumor has drastically shrank!!! Why? I asked that and asked Dr. Ries. He said he did nothing and BLT-D doesnít have affects in three days, it takes months. My only explanation is the spiritual healing, i.e., God shrank it enough to allow me to live, enough so it wouldnít go into the spinal cord and it was less than a millimeter away.
So I continued to have pain, the tumor type of pain. Another MRI in December, 2001 showed no change in tumor sizes. Dr. Ries had come up with the idea of an Allogeneic Transplant using my sister. She is my only sister and she was a match. In January 2002, I decided to go ahead and do it. This has caused the most severe physical difficulty in my life. Iím not sure if the original neck pain, (i.e., living with a crushed first vertebrate) or the side affects of this transplant are worse. Having my sisterís bone marrow, means having her immune system. Her immune system may see parts of my body as foreign and attack it. This is called Graft Versus Host symptom or GVH for short. Hereís what I had and what I did for it. Not all these solutions came from Oncology. Some came from other doctors as I sought out a solution for the pain, starting with my regular HMO doctor and then going to experts in that specific area.
5th Tumor, January 2003
A routine MRI found the tumor in C1 and C2, on the right side and close to the first vertebrate. My three USCF doctors had no solution. After seeing the three of them we thought this was it. About a week after the last visit, Dr. Weinstein called and said UCSF was installing a new radiation machine, Cyberknife, and I may be a candidate. I was scheduled to be the first patient, ended up being the second.
Treating Doctors: Dr. Curt Ries, semi-retired Chief Oncologist, University of California, San Francisco; Dr. Larson, Director of Cyberknife, UCSF; Dr. Weinstein, Director of the Neurospinal Surgery.
My wife and I waited two months, in total fear that the tumor would invade the spinal cord. Nope, not this time either. Cyberknife uses X-rays as feedback to determine the patients location on the table. A CAT scan is the basis. The X-rays are compared to the scan and the machine adjust for patient movements. It was designed for brain tumors. The head is the reference point used in the basis. My situation was different, of course. How were they going to assure they werenít going to over radiate my spinal cord. What was the reference point. The spinal cord shifts in relation to the head and my first vertebrate was loose. Neither were good candidates for a reference point. Dr. Weinstein put six screws in the area. These became the reference points. Just my luck, the bar blocked some of the screws from the X-ray image. Most patients can move a little while getting Cyberknife. I had to stay still, because of the bar. Three hours of sitting on a hard table (they took the pad out, because it caused to much motion). It was mentally the most difficult thing I ever did. Five days of treatment. After the first day, I was pain free for the first time since the slip in April of 1997, six years later. Well, at least pain free from tumor pain. I still have the pain of GVH and the fissure.
6th Tumor, February 2004
I couldnít sit for more than five minutes. I had sciatic nerve pain down my left leg. My left foot was going numb. An MRI showed a tumor shooting out from the tail bone and filling the donut-shaped hole in the left hip. It was huge.
Treating Doctors: Dr. Curt Ries, semi-retired Chief Oncologist, University of California, San Francisco; Dr. Forrest, Radiation Oncology, Pleasanton, CA; Dr. Larson, Director of Cyberknife, UCSF.
Dr. Forrest treated me again with a Clinac radiation machine. The pain is better. My foot is still numb, although not as drastic. In addition, the pain comes and goes, mostly while lying down. No symptoms. 30 days of radiation treatment. I worked full time through the treatments, skipped out for 30 minutes to get zapped.
7th Tumor, January 2005
I had a car accident. A frontal impact! The other guy pulled out in front of me. Luckily my head didnít come off. That is the worry. This kind of impact, may cause the bar to detach or worse. So, I started having neck pain. We did an MRI about two months sooner than our routine one. Wow, God blessed again, found a tumor. It was the size of a walnut, in C1 close to the spinal cord again. I lost control of my tongue! I couldnít swallow or speak hardly at all. Control of the right side had been gone for years. Now, the left side was gone. I could only use a small piece of the center of the tongue. I had to take liquids and launch it down my throat. I would wake up choking on my own saliva, about every Ĺ hour. My wife, God Bless her soul, stayed in bed with me. I scared her every time I jumped out of bed choking, reaching for a glass of water to try and clear my air passage.
Treating Doctors: Dr. Curt Ries, semi-retired Chief Oncologist, University of California, San Francisco; Dr. Larson, Director of Cyberknife, UCSF.
Cyberknife was the only answer once again. Five days of treatment. After the first treatment, the pain was gone and I could use my tongue again. Currently, the tongue is almost back to where it was before this tumor. The right side is still dead. Every now and then the muscle get sore or something and I canít speak. However, for the most part itís back to pre-7th tumor. Dr. Larson had never put anybody on the Cyberknife quicker than two weeks. He did it in two days for us. Thatís HMO approval, plastic face mask, CAT scan, blood tests, and all his team's calculations and preparation. Amazing, and probably saved my life, i.e., kept the tumor from invading the spinal cord. Two things helped. My wife is a nurse and Dr. Larson knew she worked in neurosurgery. He listened to her when she said the tongue was a sign that we're close to the end. (Once in the spinal cord, there is nothing the doctors can do. Iíve had maximum dose of radiation and you canít cut the spinal cord.) Secondly, I carry with me all the phone numbers of EVERY PERSON EVER INVOLVED in my medical treatment. HMO, doctors, pharmacies, etc. My wife encouraged Dr. Larson to do something immediately and I had the correct phone number, my HMO Case Managerís number. Iíve always kept my HMO Case Manager informed about my situation. She knew about my visit, knew the urgency, and was expecting something. My wife called her Monday before the Tuesday visit with Dr. Larson. You must manage your own health care. Get the right people on board.
Below I have summarized the tumors and all the information above. You can get a quick glance at my history.
Update March 2008: Iíve had 11 separate Plasmacytomas. This many reoccurrences has never been documented, if ever happened, before. Dr. Curt Reis, semi-retired Chief Oncologist at UCSF, classifies my as having Multiple Myeloma. All the tumors start in the bone, but Iíve never had any indication of Myeloma in the bone marrow, i.e., the protein spike.
Tumors 8, 9, 10, 11 - Sept 2005
This is the first time weíve seen four Plasmacytomas at once. Also, I had one in the hip, so these are the second outside the 1st vertebrate. A little scary! Wondering if itís full blown Myeloma? The four tumors are in the 8th rib, right humerus (right arm), right shoulder blade and 6th rib. That makes 9 reoccurrences, 11 tumors, and 17 treatments, but whoís counting! At the end of 2005 I had Clinac Radiation. It worked on two of the tumors. The one in the arm and the one in the 8th rib did not disappear. Thus, I went back to Cyberknife for the 3rd time. Dr. Reis was worried and wanted to do more. He e-mailed the experts around the nation and they came up with, put me on Revlimid. Dr. Bartolo (spelling?) of U of Arkansas, e-mailed Dr. Reis and wanted me for his study group. I told Dr. Reis, I would love to, but canít pay for anything. My insurance wonít pay and of course, I canít. That was interesting and felt good Ė Iím a White Rat for medicine! Dr. Reis put me on 5mg Revlimid. Then, we up it to 10 mg. It was a maintenance dose. The normal is 20mg. Well, my blood dropped and he pulled me off it after two months. The blood kept dropping from Feb 2007 to July 2007. I was at transfusion levels and then all of a sudden they popped back up to almost normal. Weird! Dr. Reis explained it as ďJim, itís your body!Ē Thatís howís itís been. 11 tumors? Tumor disappearing without treatment!!! Very mysterious stuff during my journey with cancer.
Today, my b-day 3-14-2008, 10 Years of MM!
May have 3 new or repeat tumors. The hip, 8th rib and arm hurt like Plasmacytoma pain. I have MRI and CTís coming up soon.
E-mail or call me anytime.
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