1942 / Class of 2001 / Type: IgG, Lambda / Chemo, PBSCT / Remission / Updated: 8/12
I was diagnosed in September 2001. I had fallen on my right shoulder, suspecting a strain or sprain. After 2 months of putting up with the pain, I made an appointment with my physician. He ordered x-rays and we waited. He suspected Multiple Myeloma. Not good news. I was referred to an expert oncologist at the Cancer and Blood Institute in Rancho Mirage. Stage IIIA, very serious. 75%+ Myeloma cancer cells. Many bone lesions.
I retired as a fire chief after 33 years of fire service in 1995. I was exposed in thousands and thousands of fires to smoke, soot, toxic chemicals and gases produced by the fires, of all types. As a young firefighter, I was involved for several years in truck trail and fuel break maintenance using defoliants, 24d and 245t(Agent Orange). We also burned the brush and other vegetation during the winter to keep the fuel breaks manageable. An example is the international fuel break from San Ysidro to Campo along the Mexico-California border(50+ miles). I was also exposed to diesel fumes, used solvents to clean the engine compartment and undercarriage of fire engines. I worked as a mechanic in the fire agency shop over the winter months when fire season was closed. I built up a hyper-sensitivity to any kind of hydrocarbon compounds and developed rashes that kept getting worse.
In the mid to late 70's, I read an article about Viet Nam and their defoliant program with herbicides. It was the exact same chemicals we used, a known carcinogen! Suffice to say, I would not use the Agent Orange any more. Maybe the chronic and acute damage to us was already done.
I know that the toxins and poisons are stored in the body's fat cells, some never dissipating. After I retired in December 1995, I needed to lose about 30 lbs and improve endurance and strength. I started a walking/jogging and exercise program with a careful watch on my diet. I lost the 30 lbs. in 3-4 months and drastically improved my physical fitness. I could jog over 4 miles, half up hill, and ride a bike for hours.
What happened to the toxins in my shrinking fat cells? I believe they became more potent and released into my body systems. When I was diagnosed by an oncologist, he felt the cancer started to manifest over 5 years before 9/2001. Coincidence? I don't think so. There is a high correlation of herbicides, pesticides and insecticides use with Multiple Myeloma. I now know there is a way to de-tox the body of these chemicals before losing weight. Other firefighters have had serious neurological systems problems by losing weight before de-tox.
I was started on VAD in early Sept. 2001 and couldn't tolerate it and the side effects. 4 rounds of pneumonia in 4 months. In Feb. 2002 to Sept. 2002, I was on a Brostallicin research study chemotherapy. I wasn't getting worse, but not much better. On Sept. 2, 2002, my oncologist started me on Arsenic Trioxide, Dexamethasone and Ascorbic Acid chemotherapy through a research study. The first week was hard and the cold-turkey stopping of Dexamethasone affected me very seriously, needing hospitalization. Released in 3 days.
I tolerated the treatment very well since that first week. At the end of the first round of this treatment on Dec. 2, 2002, I had a bone marrow biopsy. My oncologist reviewed the Goldenberg SnareCoil bone marrow biopsy procedure, after I brought the information to his attention. After 5 of the most excruciatingly painful BMB, I was ready to try new procedures and tools.
Unbelievably, the SnareCoil procedure was painless. Didn't feel it inserted, through the hip bone nor the snaring of the specimens(2). I also didn't have several days of pain in my hip as before. No pain after the procedure, either! My cancer cells had reduced from 70+% to 40%.
I finished a second 12 weeks of the Arsenic Trioxide chemo in February 2003. I had completed 5 weeks of a third round of the same chemotherapy by April 2003. My oncologist recommended I stop the chemotherapy and take a break. In May, I had another SnareCoil bone marrow biopsy and visited Scripps-Green Hospital in La Jolla, CA, for pre-auto PBSCT testing. After extensive testing, my cancer count was down to about 20%. Started Velcade in June until planned auto psct at the beginning of August.
The Velcade treatments were amazing. My Myeloma % dropped to 5% or less in 2 months. My 8th BMB was another Snare Coil. No pain again! This means that the stem cell transplant is a go starting 8/12/03. I have learned extensive information from other MM survivors at www.acor.org Listserv. This is a great source to see what others are experiencing, what treatments they are currently taking and an outstanding support network. It will be a ride, I know, but I am very much looking forward to it. I will have a wonderful team of professionals taking care of me. My wife of about 40 years is always beside me, and my rock.
The auto stem cell transplant went very well. I was in the hospital 3 days only. Slight nausea during one day. Lost all my hair. Discharged from out-patient in 45 days.
11/03 BMB indicated in remission, but suggested the possibility of not in complete remission. Retested in 12/03 for tandem auto PBSCT and had the tandem stem cell transplant on 12/12/03. One day of nausea. Again hospitalized for 3 days and 25 days as out-patient, then released to go home. Heck of a way to spend Christmas. Current tests indicate full remission. Considering some type of low dose maintenance.
February 2005: Over a year post tandem auto PBSCTs. Started Thalidomide maintenance in June 04, 50 mg a day and continuing Aredia once a month. Still in remission, but slight detection of m-spike from serum FreeLite electrophoresis. Increased to 100mg every other day late summer and cut back to 50mg only 1/05. M-spike at 0.20 2/05. All other levels and counts all normal. M-spike at zero by spring 05.
Took the better part of 2004 to regain most of my strength and energy. Started infant shots in Dec. 04 and completed the first infant shot series in 2/05. Still only about ½ the energy I had prior to MM. Working on that. We are planning a trip to Europe this summer. Lots of activities and commitments. We are enjoying life to its fullest. The four granddaughters keep us very busy. Always something going on.
March 2006: This past year went by with a blur. In April 2005, my M-spike was indistinct and has remained at zero. IgG Lambda has been stable around 1000 since the auto PBSCTs in 2003. That is good news. 50 mg of Thalomid every other day from April until Sept. and then cut back to 5 days a week. Stopped Aredia between Sept. until this month. Changed oncologist because my former oncologist moved to Utah. I will receive Aredia every other month for awhile on advice of my new oncologist.
We spent 3 weeks traveling through England, France and Spain during June. Completed the 2nd year infant shot series in Dec. Peripheral neuropathy has been stable for quite some time, bothersome but doesn’t interfere with what I set out to accomplish. Granddaughters are growing up way too fast, but a delight to watch the process and my son's families dealing with those issues.
November 2007: From Nov. 2006 until May 2007 was a rough time. In November 2006, I fell while on my daily 4 mile walk with a good friend and broke 4 ribs. Dilaudid stopped the pain at ER immediately. Spent 6 days in hospital. Lidocaine patches and drugs over the ribs kept the pain in check for the next several weeks. The ribs were almost healed by Jan. 2007.
Late Jan., I had emergency surgery for severe gall bladder attack. It took 6 days of treatment in the hospital to settle down my liver, pancreas, etc. before an operation was possible. Dilaudid made the process painless. (Thanks Tom C. for the info). It wasn’t possible to have the laparoscopic surgery, so I was gutted like a fish. I was discharged 6 additional days later with a gall collection bag on my leg and a suction bag for draining the internal surgery site. I had the gall bag removed 6 weeks later. The good news in all this is I lost over 30 pounds, mostly from walking again and only ate things that wouldn’t upset my digestion system. No fat and smaller portions. Kept it off.
Summer and Fall 2007, Waiting Anxiously: Our son and his wife are expecting twins by Nov. 15th. One is a girl and one is a boy. This is in addition to their other two daughters, 11 and 4. This is the first grandson to carry on the Vogt name among my siblings, their children and grandchildren. Current news to follow when the arrival occurs.
Our oldest granddaughter from my other son and his wife has earned her driver’s permit this summer and driving with an adult and her sister is 3 years behind her. Oh my!
I remain in Complete Remission with no M-spike, 1100 IgG stable, FLC normal and no new lesions and old ones seem to be “patched” and the bones are much better. Only on Aredia once a month over 4 hours in one liter of saline. Stopped maintenance daily 10mg of Rev last summer. Get extensive serum testing once a month and see oncologist every 2 months. Auto PSCTs in 2003 did the trick for me, or so it seems.
Walking in the Palm Desert American Cancer Society’s Relay for Life tomorrow with survivors and honoring those who have passed away. A very emotional time for us.
June 2008: Monthly complete serum testing, including FLCA confirms maintaining complete remission. Twins were born on Dec. 1, a boy and a girl. They are 6 months old already! Just rumbling along until my first colonoscopy 2 weeks ago. Focused to much on MM and colonoscopy way overdue. A cancerous tumor was found, PET/CT scans and local MRI confirm and gave us good news. Lucky to find it early. Colon resection surgery June 23.
July 2009: This past year was full of events. June 08 colorectal surgery found that the tumor had escaped some from the colon. So, a colostomy was installed and the lower colon with tumor isolated. Had Xeloda chemo and 30 radiation treatments to the tumor, July and August. Oct. 2008, had second major surgery to excise 18” of colon and take down colostomy. 2 of 23 lymph nodes showed some possibility of abnormal cells. Colon tissue at resection needed additional time to heal, so a ileostomy installed at small/large intestine junction with colon isolated. Jan. 09, ileostomy take down. Feb. 09-June 09, Xeloda again for adjuvant chemo. Whew, glad that is over. Now it is watchful waiting and testing every 3 months. Dr. Mark Talamini at UCSD La Jolla, CA did the 2nd and 3rd surgeries. He is an excellent surgeon with impeccable credentials and experience. A very nice guy to boot. Google him to understand why I chose him to do the follow up surgery.
Granddaughters Haley is starting her senior year in high school, Hannah is starting 8th grade, Kierstin is starting 7th grade. Annika is starting 1st grade. The twins, Eric and Caitlyn are now 19 months old and getting into everything and teaming up on folks. We completed a complete re-model of our home. Life is very good.
MM remains stable and in complete remission (indistinct, their words, since 2004). Tandem auto stem cell transplants in 2003 worked well for me.
August 2012: Still in remission. Granddaughter Haley starting her Junior year at San Diego State University. Granddaughter Hannah starting her Senior year at West Hills High School. Granddaughter Kierstin starting her Junior year at Linfield High. Granddaughter Annika starting 4th grade at Paloma Elementary and twins Eric III and Caitlyn in Pre-Kindergarten. 2 brothers and 2 sisters are fine. Life is grand.
Several members have started a World MM Tour and you can participate by visiting my contribution at this link: http://vogtmmlist.blogspot.com. Click on the Contributors to go to others and expand your tour from there.
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