I have been diagnosed with multiple myeloma for over seven years. In that time I have had a number of treatments, including two stem transplants. At the moment I am in remission .
My consultant is Dr MW Jenner at Southampton General hospital UK . His team of doctors and nurses are wonderful, they make me feel safe .
I am hoping to stay in remission for as long as possible and go on holiday this year. Fingers crossed.
— John
I am a six-year multiple myeloma survivor. I want newly diagnosed patients to feel that there are many treatment options now and that one can live with this disease–and live quite well.
— Kathryn
I was diagnosed with multiple myeloma in April 2012 from an irregularity with a blood test. In October 2012 I had my first symptom with a fracture in my T5. I then started on a clinical trial with prednisone , velcade oral chemotherapy. I had a successful transplant in February 2013 and it has taken me a full year to recover and to feel like my old self.
I am in complete remission and hope it will last for a long time. I couldn’t have gone through this without my family support, I’m lucky.
— Jenny
In 2004 my wife and I participated in our annual physical at Madigan Army Hospital. Everything was fine except my wife had an evaluation from a contract physician. We received a call from Madigan that my wife’s protein level needed to be retested. The Army physician indicated that my wife had mgus? Our initial thought was, “what the hell is that?”
As snowbirds, we left for Yuma and had a second analysis, with a complete bone scan, and the results were the same, multiple myeloma! A cancer with no cure! We returned to home in Gig Harbor and requested from Madigan a third opinion.
We participated in a test in Seattle at the UW Cancer Clinic/ Fred Hutchinson Clinic and the results were the same. We moved to Stevensville, Montana and researched who could help us best. Confronted with a disease that moved, “at the blinding speed of a glacier,” we selected Dr. Pat Beatty, st. Patrick’s Hospital, a physician with a PhD in the domain, “Multiple Myeloma.” His criteria was 3 month tests, and when the protein tests reached 6 or higher, his treatments would intensify.
New medical miracle treatments came on the field, Revlimid, and Velcade were used. Then we went to Salt Lake City for a stem cell treatment at a Mormon Hospital. This whole experience was angonizing at best.
There was a 30 day chemo treatment in which every cell in my wife’s body was refurbished at least five times. The trail to the bathroom was covered in towels as most of the time she could not make it to the bathroom in time. It reminded me of the times that we had babies in the house and the washer and dryer was constantly running. We recovered from that period and her protein was constant at or about 1.0. The lowest it has ever been.
Two years ago we went in for my wife’s breast test. Up jumped the devil and she wound up with a single breast removal. This saga is not over as she will have an evaluation to determine if she needs the other breast removed.
In the winter we live on a golf course in Arizona and she is a robust golfer. She is still the light of my life and I clearly remember Dr. Beatty saying, ” this is a terminal disease! ” then I recall, after about two years, ” We are all terminal.” Medicine, Dr. Beatty, positive outlook, and lots of prayer, have extended our life style. We would hope that this story provides hope and clarity for others! We have survived this challenge for over11 years! There are no problems in life, only “Challenges and opportunities!”
— Jim
I was diagnosed three years ago this week with Stage 3 multiple myeloma, an incurable but treatable cancer. The bad news came April Fool’s Day. Some prank. Yet three years later, I’m still above ground.
Yes, it sucks. I often deal with some kind of cancer-related pain from my rib and spinal fractures, bones and muscles. I could barely get out of bed this week because of recurring muscle strain in my upper legs. And my battered immune system makes me vulnerable to colds and infections, and such illnesses take a long time to leave my body.
The daily chemo-drug pills I take as part of a national clinical study sometimes affect my gastrointestinal tract, and I’m starting to feel tingly in the mouth.
But my ordeal mostly has been a blessing. I’ve come to know many great people and survivors along this journey. I never wanted to become a member of this club, but now there is a sense of spunky pride in belonging. Until a few weeks ago, I mostly have had long stretches of feeling good enough to play hoops and racquetball regularly with minimal pain.
Human angels abound.
I need to thank Dr. Mark Wilkowske, the head of the Frauenshah Cancer Center in St. Louis Park. I called him Marcus Welby in a 2011 column because of his calm demeanor and sincere bedside manner and his expertise at prescribing aggressive chemotherapy to counter the cancer.
The staff at the University of Minnesota Bone Marrow Transplant Clinic has been phenomenal in following through on my more than half-dozen hipbone biopsies (you should check out the length of the needle they use) and two stem-cell transplants, which seem to be keeping the cancer in check right now.
THANKS TO A UNIVERSE OF WELL-WISHERS
My wife has been a godsend, as she always was, in a caretaker role that I strongly believe has been more stressful than the hurdles I’ve gone through. I’m just the patient. This has emotionally affected my two kids, but they are both troupers.
I want to publicly thank all those who prayed for me and supported us in small and big ways throughout the past three years, including arranging a fundraiser that first year to defray out-of-pocket medical costs. The folks at the Pioneer Press, from management to the newsroom grunts to Christie Iverson, the lobby customer service clerk who is dealing with her own cancer journey, have been very supportive.
I have a cabinet drawer full of cards and emails from hundreds of readers and strangers — many of them cancer survivors or relatives and friends of those who have passed away.
I also appreciate those well-wishers who hail from the “I don’t often agree with you but” crowd. One reader sent me an email inquiring about my health since he did not see my columns on my regular days last week and did not know I was on vacation.
I don’t know when this gig will end. I’ve had a good run. I know every day that kids are born who don’t make it through the hour or the night.
But I’ve told my kids to stock up on Depends and pick up those Shady Oaks, Peaceful Village and other such heavenly-sounding rest home brochures just in case I beat the odds.
— Ruben R.
I was diagnosed in July of 2011 after my doctor called me at work to tell me I needed to enter the hospital as soon as possible because my kidneys were shutting down. When I got to the hospital, my doctor was waiting for me along with a Nephrologist he had called in for a consult. My Nephrologist started by asking questions & taking down my medical history. The next morning he started testing by doing an ultrasound of my kidneys, then he said he wanted to do a biopsy. I gave permission & after the biopsy, he sent the specimen to LSU & asked for next day results. He told me he thought I had MM but wants to be sure. He also said he needs to call in an Oncologist. I knew then that it couldn’t be good.
The Oncologist came into my hospital room & said she needed to do a bone marrow biopsy so they can see if it is MM. She did the biopsy procedure on both hips and confirmed the MM. Then 2 days later I was on dialysis. I left the hospital after an 8 day stay & came home with a whole new life.
I couldn’t go back to work, so I went to file for disability Social Security which was first denied but after 4 months was approved. I stayed in my hometown for treatments which included Velcade, Dex & Revlamid. I was on dialysis 3 days a week and on those days was useless because I was so tired. At my daughters request, after she did research on MM, I went to MIRT in Little Rock for extensive testing everyday for a full week. Then I met with my first doctor who said the sooner I got there for treatment the sooner I could get off of dialysis because the longer you’re on dialysis the harder it is to get off because your kidneys become dependent on it. So, I entered the hospital in Little Rock for 20 days to undergo extensive Chemotherapy. They also collected my stem cells while I was there. I came home for about 2 weeks to rest, then went back on Novenber 1 for another round of Chemotherapy.
I left Little Rock the day before Thanksgiving & was so glad to come home. I stayed home until the day after Christmas when I returned to Little Rock again. The day after I got to Little Rock I started another round of Chemotherapy for 9 days and on Jan. 4, 2012 I had my first autologous stem cell transplant.
On January 31, 2012 I saw my doctor who told me I was in partial remission & said he wants to do another transplant after I go home to rest for a while. I returned to Little Rock on March 1, 2012 & started another round of Chemotherapy & had my 2nd stem cell transplant on March 13, 2012. I saw my doctor on March 30 and he said I was doing well and sent me home again. He said I was in complete remission.
I’ve had many bumps in the road, but I’m so thankful to be alive. I’ve been on Maintenance therapy of Velcade, & Dex once a week for 2 years & nightly Revlamid 10mg. Since December 2013, my body has started rejecting the Chemo. As of today, I’m not on anything because my platelets are so low (39) on Tuesday. So my local Oncologist is contacting Little Rock to get me back up there to get another bone marrow biopsy to see what’s going on. I told her that I prefer to think my body is saying no because enough is enough. Maybe I’m healed which would be the ultimate blessing. I hope my story will touch or help someone.
— Jo Ann W.
For several months I had been experiencing a nagging back pain. One month in to a three month trip, while hiking on Memorial weekend, my back went out and I ended up in the emergency room. I was prescribed pain pills and muscle relaxers. After 10 days the pain was no better and one morning I could not walk at all. My husband called the paramedics who took me to the hospital.
The emergency room doctor wanted to prescribe more meds and send me on my way, I insisted that I was not leaving till they did some tests, an MRI or Xrays. He grudgingly called to see if there was room for me that day to have an MRI. When the MRI results came back he apologized to me before admitting me to Oncology. For a few days several tests were done to confirm Multiple Myeloma.
The plan was to get the pain under control so I could return home and begin treatment. In June 2013 I was diagnosed, started treatment with Velcade, Revlamid and Dex. After 4 months I was in CR. I then had my stem cells harvested and stored in case I need them in the future. I am on a maintenance of Velcade every other week and Zometa once a month.
It is almost 2 years since my diagnosis and I feel good.
— Delia M.
I was diagnosed almost seven years ago with iga multiple myeloma. I was told at the time that life expectancy was from two to five years. I Was harvested for an ASCT but one of the chromasone tests indicated 4;14 positive. patients with this condition typically go out of remission sooner than standard risk patients. I was fortunate to be accepted on a clinical trial mainly taking velcade and dexamethasone. It worked very well for me as I kept in complete remission for 47 months. I have slipped out remission almost ten months ago but am being treated sucessfully with revlimid. I guess what my story tells us is that patients can do better than the averages. The seven years that I have lived has allowed great steps forward in the treatment of multiple myeloma. Keep up the fight.
— Verne S.
We brought my husband Jerry to a doctor for back problems beginning in late 2009. Jerry returned early from Florida to Indiana in February 2010 and saw Dr. John R. Alessi in Nashville, IN. He referred Jerry to a physical therapist who seemed to get him walking again.
The next year in Feb. 2011 Jerry had a consultation with Southwest Florida Neurological Assocs. in Ft. Myers where they performed a thoracic & lumbar MRI. The MRI revealed two crushed vertebrae at L-1 and T-11. Jerry also lost more than two inches in height.
In the spring of 2011, as a result of his Welcome-to-Medicare physical, Dr. Alessi referred Jerry to Dr. Michael Mak, a hematologist/oncologist at Columbus Regional Hospital (CRH) after noting a WBC-14.1; RBC-3.93; Hgb-13.5; Hct-39.6; MCV-100.8; MCH-34.3; MCHC-34. Dr. Mak diagnosed him with B-cell chronic lymphocytic leukemia (CLL) on 8/12/2011 after the excision of a groin lymph node at CRH, plus other tests. Treatment began with 4 weeks of Rituxan chemotherapy and then waiting 6 months for the next round of treatments.
We were in Florida from October 31, 2011-April 6, 2012, and Jerry could still swim copious laps and bicycle around the coop where we own a home in Bonita Springs, FL. He played Pinochle, bridge, cribbage, friendly competitive Bocce, swam, and joined the Old Spokes cyclists occasionally. He finished his latest children’s book last winter.
This year Dr. Mak changed the lymphoma treatments to every other month based on new research findings. This year Jerry’s first treatment with Rituxan after we came back to Indiana was April 10, 2012, and his last treatment with Rituxan was June 5, 2012. On Saturday, June 9, 2012, Jerry swam his usual 90 laps in the Brown Co. Y pool and then presented with a fever that afternoon.
On Monday afternoon Jerry visited Dr. Alessi who prescribed antibiotics (including Cefdinir and 800 mg. Ibuprofen) thinking it was the flu. The fever would barely let up and on June 19th, Dr. Mak admitted Jerry into CRH with failed liver and kidneys. Jerry was discharged June 25th and went home with a prescription for Prednisone which he took through June 29th. Fever presented itself again on Sunday morning July 1st around 12 noon. On July 3rd Dr. Mak requested a CBC and on the 9th he performed a bone marrow biopsy with more labs on July 13th and 23rd and on July 30 Dr. Mak told us of the multiple myeloma diagnosis.
He called Dr. Abonour at Jerry’s request and Jerry scheduled an appointment with him August 1. Then CRH Cancer Center scheduled the first Velcade/Dex treatment for August 2. Velcade/Dex was administered August 2, 6, 10, 13, 28, 31, September 4, 7, 18, 21, and 25 with only Dexamethasone on the 28th due to low platelets. After the second cycle, Dr. Mak referred Jerry to Dr. Samantha Schwartzkopf with symptoms of edema, rapid pulse, and breathlessness. An EKG, CatScan of chest, and stress cardiogram were performed.
On Monday, October 1 Dr. Mak performed another bone marrow biopsy. Jerry met with Dr. Abonour on Tuesday, October 2, and came back for a PetScan on October 5. The relentless fever has presented itself all along, doused by the Dexamethasone (2 days) but recurring as soon as the Dex wears off. We are controlling the fever with Acetaminophen and Ibuprofen, taking one of each about twice per 24 hours. Because of moderately severe back pain, Jerry also takes oxycodone to take as needed. He averages one 5 mg. tablet per day. His bleeding and thin-skinned arms are healing but the edema of his stomach and especially his lower extremities continues, currently abating on his left side. He wears Ted hose very often. CRH tested his legs by sonar for blood clots and found none. His neuropathy in his hands is lessening but he continues to have little feeling in the soles of his feet. He eats willingly and always has water or 100{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} juice available.
Jerry loves a good movie at home or a good book. He goes with me to the Brown Co. YMCA, but usually has energy for very little activity except checking the web while I do my synchronized swimming laps. His vitamins, minerals and medications taken daily: 1 20 mg. omeprazole magnesium for his hiatal hernia 2-400 mg. acyclovir 1-1000 mg. Equate antacid calcium carbonate 1-400 mg. Vitamin E 2-500 mg. Vitamin C 2-99 mg. Potassium Gluconate 1-1000 IU Vitamin D3 2-400 mg. Magnesium with a bit of Zinc 1-Equate Complete Multivitamin Medication taken on the second day of the chemotherapy: Dexamethasone—20 mg. Medication for Osteoporosis: Zometa monthly Analgesics for fever and opiate for pain: Acetaminophen-500 mg. each Ibuprofen-200mg. each Oxycodone-5 mg. each Ailments since June 9, 2012 or hospitalization June 19-25, 2012: 1. Sacra-iliac pain radiating to the legs 2. Neuropathy with slight tingling in fingers but little feeling on the soles of Jerry’s feet 3. Trembling on the left side since the hospital stay (Jerry’s left-handed.) 4. Edema especially in legs and across stomach area which has abated 5. Bruised, bleeding arms (healing now), perhaps due to platelet shortage 6. Shortness of breath (of longer duration than June 9, 2012, and probably due to anemia) 7. Fever (started June 9, 2012) and is abating October 7-8, 2012! We’re waiting to see if it holds. 8. Jerry has new itching of the loose skin all around his feet as the edema subsides.
— Martha W.
On April 2004, I went to my doctor for my routine physical exam, never suspecting that this visit but would be anything but routine. My doctor voiced her concern about the excessive protein appearing in my urine. I immediately asked why she was especially concerned. Her response was a scheduled appointment with an oncologist for further test.
I followed up with my doctor to receive a definite prognosis. The oncology results confirmed my doctors’ suspicious that I had a form of cancer called Multiple Myeloma, a disease I had never heard of.
After getting over the initial shock of my diagnosis, I was set on a course of being thoroughly educated about the disease, its impact, and the several options I had to address its management as I was told there is no known cure.
Initially, I decided to do nothing, since there was no cure, thinking that I would just let nature take its course, especially since I was given three to five years life expectancy with this disease. It wasn’t until I underwent a barrage of test to establish a baseline to make a treatment recommendation, and after I prayed intensely about my diagnosis, that I told my family about my cancer.
— Doris M.