Hemet, CA; email@example.com
1938 / Class of 2002 / Type: IgA Kappa Light Chain / PBSCT+Thal / Remission / Updated: 7/12
(The story is submitted by his wife and caregiver... Theresa Mason.)
Marvin grew up in Pomona, California and was exposed to heavy smudging from the citrus groves. At 19, he worked as a State Forest Fighter and again had exposure to smoke and soot. In his mid-20's he worked at a solvent plant and was exposed to all kinds of carcinogenic chemicals (benzene, etc.) with little to no safety gear. Although he changed careers and retired from police work, he has continued through his life to enjoy woodworking. He exposed himself to strippers, wood dust and other chemicals with no safety masks or gloves. (The old "it's never going to happen to me" syndrome). His dad did die of Hodgkins Disease at age 51.
In May of 2001, Marvin was lifting our 18 foot canoe and wrenched his back. He said he felt something like a "shock" go through his lower spine but then it felt better and he went on about his work. In September we went on a month long camping trip to Yellowstone National Park and although he had some lower back aches he pretty much operated normally. When we returned home, his back was really starting to bother him so he went to the family doctor at Kaiser and returned home with pain meds and muscle relaxers. The following month, he returned to the doctor as the back was getting worse and not better! Again, more pain meds and muscle relaxers with the addition of exercises for his back and instructions to attend a class for sufferers of back pain.
Marvin returned home from this class with a list of exercises to do. He is the type of person to follow doctor's orders and tried to do the exercises. The pain was so excruciating that he could barely get off the floor after doing the prescribed exercises. Back to the doctor in December and I insisted that they finally do an X-ray. They did...along with blood tests. By this time, my husband's pain was so excruciating that I was dosing him with Vicodin, Ibuprofen, and muscle relaxers every 4 hours. He was wearing a stretch type back brace and just getting out of bed was a major effort.
Finally, we received a call from the doctor who told us that there was an old stable compression fracture and that he was slightly anemic with a 12.9 HGB. She also told us that his proteins were elevated. She was referring us to a Hematologist!
This scared the wits out of me as I knew this was not a good omen...I went on the internet and a search resulted in Multiple Myeloma. By the time we had our appointment with the Hematology/Oncology department I pretty much knew what Marvin's diagnosis would be. On January 8, 2002 we received the final diagnosis of Multiple Myeloma, IgA Kappa Light Chain. His BMB showed 80% Myeloma cells and IgA was 1950. Marvin has always been such a healthy and strong person, it didn't seem possible.
Kaiser has been fantastic! I really was surprised as we were told that Marvin would be referred to City of Hope for a PBSCT and would start treatment immediately with 4 rounds of VAD. We both were very happy as a PBSCT was what we wanted. Marvin completed his 4 rounds of VAD with only one hitch...a bout with a bronchial respiratory infection.
Our Kaiser BMT doctor is great, he had previously been on staff at City of Hope and led us through the procedures. After the 4th round of VAD, Marvin's BMB showed a 10-13% level...quite a reduction from the original 80%. Marvin was entered into a clinical trial where he was to receive 2 PBSCTs. His stem cell retrieval went well and we were able to stay in the City of Hope Village for the first transplant with high dose Melphalan. I was his caretaker and quasi nurse for 12 days. He suffered the usual problems...no appetite, some mouth sores. He was off the IV on the third day after transplant and we went home on the 12th day.
As the second transplant was to get underway...the rug was pulled out from under us! The trial had been put on hold as they had what they considered to be a higher than expected % of people experiencing liver problems after the second transplant. They were going to use Cytoxan and Busulfin on the second transplant. After a BMB showed that Marvin was at about 5%...blood and urine all normal with no evidence of Myeloma, it was decided to forego the 2nd transplant at this time and go on maintenance Thalidomide.
October 2003: Marvin has now been on Thalidomide for one year and is doing great. His maintenance dose has leveled out at 200mg per day. He has experienced the common side effects of Thal... constipation, sleepiness, and a small amount of neuropathy. Tips of fingers, toes and lips are somewhat numb but really not anything that affects him too much. His last BMB was in July of 2003 and had reduced further to 3%. His IgA was at 190 which is the lowest it has been and his HGB is hanging around 14.3 to 14.7. Last winter he did suffer from quite a few colds, some going into bronchitis, but not too bad considering. He feels good and walks on the treadmill about 5 days a week for 1/2 to 1 hour. Also, swam during the summer. He also has been receiving Aredia once a month since diagnosis. His back is stiff and he is very careful about what he does so as not to injure it. He has lost 3 1/2" in height. His original CT and MRI scans showed only the one compression fracture but there was some pretty extensive osteoporosis. We have taken two cruises this year and are trying hard to enjoy life everyday not knowing what tomorrow might bring.
May 2004: This month brought some exciting and happy news for us! Marvin had his yearly tests... 24 hour urine, blood work and his Bone Marrow Biopsy done early this month. The urine and blood came back "Zero" as they did a year ago. It was the BMB we were concerned about as it still had shown 3% Myeloma last year. Well... Marvin is now in a complete remission with no sign of Myeloma in his bone marrow! What a happy day this was! He has remained on Thal since September of 2002 with a steady reduction in dosage to the 150 a day that he takes now. He has had some minor neuropathy signs... numbness in his fingers and toes. We expect the Thal to be reduced to 100 in the near future but Marvin will keep taking it as long as he can. The complete remission came 2 1/2 years after diagnosis and one year after his stem cell transplant. The Thal has worked for him! His HBG level was 14.9 and IgA at 150. We are hopeful and happy and have been enjoying life.
June 2005: This last year has been a good one for us. June is his three year post transplant anniversary and we almost feel normal. Marvin has been well for the entire year and feels more like his old self than ever. He has continued to take Thalidomide but has been reduced to a maintenance dose of 50 mg. per day. He really has experienced only minor neuropathy symptoms in this fingers and toes which is somewhat amazing as he has been on thal for almost 3 years now. We just received results on his annual BMB, blood tests, and 24 hour urine. All still remain normal! His IgA level was 162 and his hemoglobin hovers between 15.0 and 15.3. Kidney function is good, protein and calcium levels are all normal and all indications are that he remains in a complete remission. We feel very lucky! Marvin is dedicated to taking good care of his body and drinks 2 qts of water a day to flush his kidneys and tries to exercise regularly on the treadmill. He also continues to receive Zometa once a month (we changed from Aredia as it is so much faster). His back still gives him some trouble now and then but it feels more like arthritis than anything else. He uses ibuprofen or rarely will take a Vicodin if he overstresses his back. We are enjoying our life and our grandchildren and our thankful everyday for his continued good health. We send our love and good wishes to all who are fighting this disease!
July 2006: It has been a year since I last posted and a good year for us! Marvin just went through his yearly bone marrow biopsy and other blood and urine tests and he remains in remission. Marvin has remained on 50 mg. of thalidomide daily and done very well on this dose. The neuropathy he has experienced is minor and does not hinder him at all in his daily activities. He has also continued to receive his Zometa infusion on a monthly basis but his doctor has ordered a bone survey and if all is well he recommends discontinuing the Zometa.
Marvin feels great other than the minor aches and pains in his back from the original compression fracture and arthritis. We are taking a 17 day cruise through the Panama Canal at the end of September and we are really looking forward to it! We feel so lucky that Marvin continues to do so well and hope that his story does give HOPE to others that are struggling with this disease! Our best to all of you!
March 2007: Just a quick note to let you know that Marvin is close to reaching his 5 year stem cell transplant birthday and is still going strong. Our most recent doctor visit was a couple of weeks ago and we couldn’t be happier with the reports. He is still in a good remission with all blood results still in the normal ranges. His IgA was 217, HgB 14.9, and Beta-2 Microglobin was 1.63. He remains on a maintenance dose of 50 mg. daily of thalidomide but has now been reduced to Aredia every 3 months. He feels good other than the occasional back pain (only if he does too much) and he does have some numbness in his toes, feet, and fingers from 4˝ years of thalidomide treatment. It doesn’t get in his way and seems to be very stable. We are excited and looking forward to a 24 day cruise in June to Norway and the Baltic. We hope that this news brings hope to fellow MM sufferers!
January 2008: Marvin just had his most recent checkup and he remains in a complete remission! YEAH!!! It has been six years since his initial diagnosis and almost six years since his PBSCT. We look back now and it's sometimes hard to remember what that first year was like. All of his blood work is excellent and there is no indication of the Myeloma. He remains on a daily 50mg. dose of Thalidomide and receives an Aredia infusion every 3 months. Marvin feels great and will turn 70 this year, that will be a big birthday celebration. We hope Marvin's story gives you hope and belief that you too...will be a survivor!
January 2009: Our journey with MM continues on a positive note as Marvin remains in complete remission. He continues to take one 50 mg. Thalidomide tablet daily and is lucky to suffer only minor neuropathy in his toes and fingers. From the beginning the doctor told him to take (3)100 mg. tabs of b-6 to help with neuropathy and perhaps this is why he has done well with the thalidomide. His blood work shows no indication of Myeloma and all tests are within normal ranges. It has now been seven years since his initial diagnosis and we are still enjoying life to the fullest. His general health is very good other than the usual cold or flu. We feel so very lucky and want all out there to know that there is hope in the fight against MM.
April 2010: Sorry, it's been well over a year since we updated Marvin's story. His last doctor visit was in December of 2009 and again all tests show no indication of his Myeloma. He went off the thalidomide last May of 2009 as his neuropathy had increased slightly and he had been on it for 7 years. We were both concerned as we felt like the thalidomide had been our lifeline and were afraid that the "beast" might creep back into our lives. But no, his tests show no signs of that happening. The doctor states he is in a complete remission and feels like the Myeloma may never show up again. Marvin is 71 years old now and feels great. The only after effect of the Myeloma is that he is about 3 1/2 inches shorter then he used to be. He had his stem cell transplant 7 years ago this June and other than the Thalidomide maintenance therapy he has had no other treatments. We hope his story will give hope to our fellow patients and caregivers. Keep the faith!
July 2012: We are celebrating 10 years since Marvin's stem cell transplant. Yay! Just had a doctor's visit and all tests remain in the totally normal range with no evidence of Myeloma. He has been off the Thalidomide for 3 years and takes no prescription medicine at all. He has some neuropathy from the long term use of Thalidomide but it is simply an annoyance and is a small price to pay. He has had no recurrence since his initial stem cell transplant at City of Hope. Neither of us ever imagined that our lives 10 years out would still be so "normal"! We are incredibly lucky and thank all of the doctors at Kaiser and City of Hope! We only see his oncologist once a year and his transplant doctor once year. To all of those fighting this disease: DON'T GIVE UP HOPE!
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