Category: Myeloma Stories

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Myeloma Stories

Shelley S. – Hudsonville, MI

My Husband of thirty years who was 52 years old was diagnosed with MM on 12/25/12.

He had been so sick for about 9 months,, had fractured his ribs twice, and has been in incredible bone pain for months which we attributed to the fractured ribs. The last six weeks he had had incredible thirst and was urinating frequently , and was exhausted and tired all the time. I made an appointment with our doctor for a checkup, thinking maybe all this was related to diabetes. They got us in on Dec 24, 7 am on Christmas eve. They did blood work and sent us home on pain meds.

We were just ready to start our Christmas Eve preparations for our dinner and we got a call from our family doctor to go right to ER at our hospital, David’s calcium was dangerously high and he needed to be admitted. Merry Christmas.

We knew that night after googling High Calcium that he probably had Multiple Myeloma.  After a long week and many test at the hospital, it was confirmed, he had stage three B Multiple Myeloma.

Shock…. 

My Husband was a healthy active, self employed, father of 5 sons, grandfather of 4 , whom I really needed to help me raise and be part of their lives and our business. We were scared and ignorant about MM.

When David was admitted, he had many, many lesions all over all of his bones,(too many to count the x-rays results said) high calcium, anemia, kidney damage, and his bone marrow was 75 percent involved with the cancer.  The numbers did not look good and the information we were reading on line was not encouraging at all.

Our doctor was calm and kind and told us the plan and that he would be around in 5 years. Music to my ears…….

He then started induction therapy, 16 rounds of chemo- CyBor D, Cytoxin, Velcade and Dex. He did well, no major side effects, ended in April and started the workup for a stem cell transplant shortly there after. June of 2013 he underwent the stem cell transplant and did great. We went to U of Michigan, for 21 days and were so thankful for there incredible support and care. His numbers did well, He responded well and we are so Thankful. He the underwent another 12 weeks of chemo- Rev, Velcade and Dex. Much tougher on him but he endured and finished his last chemo injection just after Christmas .

What a year it has been and we are thankful to or Heavenly Father for being with us each and every step of the way. We just got back from a week in Florida and David starts his maintenance Chemo tomorrow. He is feeling great and we are hopeful that he will feel good on this chemo and are earnestly praying for a cure. We support the IMF and are thankful that research is being done on this very tough cancer. God’s Grace is Sufficient!

— Shelley S.

 

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Myeloma Stories

Carolyn A. – Putnam Station, NY

My husband was diagnosed with multiple myeloma in November of 2012. He had been feeling poorly for awhile – back and shoulder pain and very tired. It took three doctor visits before his primary physician listened to his concerns and did blood work. At that point his primary recommended that he see a hematologist.

Before we could go to our first appt. I took him to the emergency room because he had gotten so much sicker. He was kept overnight because his kidney numbers were a little high. This overnight visit extended to almost two weeks. His kidneys were shutting down so after four days in the hospital, dialysis was started and chemo followed immediately after his first dialysis.

It took almost ten months to get him in remission- he was initially on cytoxan, dexamethasone and velcade. In Feb, 2013, velcade was stopped for a bit because of severe neuropathy. In May he started revlimid to help get him into remission. After three months, his light chains had not decreased but increased from 30 to 215. He then started pomalyst which put him in remission in two months.

My husband is very fortunate to have an identical twin so he was eligible for a syngeneic stem cell transplant. He received his transplant on 12/12/13 at Dana Farber. He was hospitalized for 21 days- his stay was extended because his kidneys shut down again after the transplant. He is currently on day 94 of his new “life”.

It has been tough with all the restrictions but the Doctors keep reminding us that its an investment in the future. He still has many foods he can’t eat, can’t eat out until late fall, can’t go in the woods, garden, mow the lawn or be around anyone who is sick. At this time he is still pretty much in isolation. His light chains are in the normal range. Biggest concern is his hemoglobin is staying around 10 so he gets winded easily but he is slowly but surely getting more strength. WBC, platelets have been excellent- kidney numbers (creatinine) stays between 1.8 and 2.0, actually lower than it has been during his treatments.

Praying everyday for a lengthy remission. At this time, doctors are trying to figure out whether or not to use a maintenance drug. Syngeneic transplants are rare so the maintenance part is fairly new to them. God bless all who have been touched by this horrific disease- it certainly is a life changer. No one else can totally understand unless they have experienced it. Praying for a cure!

— Carolyn A.

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Myeloma Stories

Phil F. – Lakewood, WA

I went for a routine physical in May 2010. My doctor called and wanted to talk about my blood work. He explained the markers for myeloma were present e.g. M spike, elevated IGG and decreased white and red counts.

I then saw the hematologist for further testing which confirmed the presence of myeloma in the “smoldering” stage. I did not have any symptoms or any damage. I then went every 3 months for blood work and annual bone scan, MRI, and CT. Still no sign of progression.

In December 2013 I started to have numbness in the last 2 fingers of my right hand. Progressing rapidly to the rest of my hand then arm. Then I started to have the most excruciating burning and aching pain in my right arm I have ever experienced.

Due to the holidays I was not able to see my regular doctor and went to and Urgent Care for help. The first time they gave me a muscle relaxer and took a routine X-ray saying they could see bone spurs and bulging discs. A couple of days later I went back and said I needed something for this unbearable pain. I was also seeking relief from chiropractic treatment since I had previous episodes of neck and arm pain related to injuries as a firefighter. However, those episodes were nothing compared to the pain I was experiencing at this time, with no relief.

I was finally able to see my regular doctor who then scheduled an MRI for my neck. The followup from this indicated the myeloma had completely destroyed my C-7 vertebrae. I was scheduled to meet with a neurosurgeon the next day. He confirmed this diagnosis and said I was imminently in danger of being paralyzed from the neck down since the vertebrae was completely destroyed with a gelatinous mass pushing back on my spinal cord causing the immense pain. He immediately scheduled me for surgery. The surgery was successful with the removal of the C-7 mass and the installation of a titanium cage and plate. However, I was now considered to have Active Myeloma and scheduled to begin treatment.

Fortunately, I do not have many side effects from the chemo. I am now in the “induction phase” with the goal of a stem cell transplant later this summer at the Seattle Cancer Care Alliance. We are all facing a “new normal” in our life’s due to this disease. My Phil-osophy is: HAVE FAITH. BE STRONG. BE YOUR OWN ADVOCATE.

— Phil F.

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Myeloma Stories

Art T. – Palo Alto, CA

Came down with pneumonia the 6th time in 5 years in August 2002. The Doctor felt some thing was wrong, did tests & told me I had myeloma & 1-3 years to live.

I returned home to AZ and Mayo confirmed it, put me on “chemo”. The first week nearly killed me, causing a 5 heart by-pass & insulin diabetes. I refused to continue chemo.

After 3 months the doctor was shocked to see my numbers getting BETTER and asked what I was doing different. I told him, 1-I would sit in my chair & say “get the hell out of my body”, 2-started to eat a fistful of pistachio nuts each morning, 3-while never a drinker, started to drink a :rusty-nail each afternoon, sipping it for an hour.

My Doctor told me not to stop & my numbers got BETTER at each future visit. I moved to Palo Alto CA a year ago & started to see a myeloma Doctor at Stanford. She was shocked at my records and my tests and asked what I was doing different. I told her the above. She also said don’t stop and asked me for blood for research. I gave 9 vials and will see her in April and hope to find her results.

— Art T. 

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Myeloma Stories

Jim C. – Gainesville, FL

8/10/11 changed my life forever. I am a physician who treats cancer. Having a pain in my neck for several months I attributed it to old age. Finally I asked a technologist friend to take a look with CT. What I saw sucked the life out of me and was the beginning of a new life.

Despite my diagnosis of multiple myeloma that had destroyed all but a rim of my 4th cervical vertebrae I was lucky in that I was diagnosed before a devastating collapse and possible death or paralysis. It has been an ordeal since. I have not responded to BMT, 2 of the “best” chemotherapies have destroyed my bone marrow and liver but I am still here working and treating patients with cancer and many other maladies.  I feel like I have been given a chance to give back and treat patients the way I would like to myself. Trust me it is an entirely different practice.

My ordeal has also taught me about the inefficiencies of the medical system. Suffice it to say there are many unanswered questions as well as hints and tricks that patients not the authorities are aware. Considering this I have attempted to unite all those with cancer in the hope that they can assist each other with these hints and tricks and also prepare and console those with similar histories. We all belong to the same club, like it or not. We can all help each other when the medical authorities fail.

I have begun a web site where all those with cancer of any variety can speak and question. I call it the OneIAM Club or one in a million. It is a portal to facilitate communication. It is off to a slow start because marketing is not my thing and also very difficult for the average citizen. I encourage you all to communicate with each other. I of course will do what I can to help. Please visit oneiam.com

— Jim C. 

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Myeloma Stories

Karen R. – Corning, NY

I was diagnosed on Dec. 22, 2003 when I was 50. It was truly a shock as I had no symptoms and had never heard of Multiple Myeloma. I went to the oncologist in the clinic in our small rural Pennsylvania town. He had never treated a MM patient and gave me a very gloomy prognosis.

My husband and I started visiting specialists further and further from our home and were referred to a MM specialist in NYC who continues to treat me to this day.

Finding a specialist that “fits” you is the most important part of this process. And don’t be afraid to go far from home to find this doctor or a famous clinic for MM.

The MM specialist can recommend a course of treatment and it may be implemented at home with regular visits to the MM specialist for urine and blood analysis.

This course of action saved my life. It has been 10 years and 2 months.

— Karen R. 

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Myeloma Stories

Lilliana S. – Huntington Beach, CA

My journey began in September 2011. I was in great shape for a 55 year young female. I started having pain in my right shoulder, thinking it was probably a muscle I pulled while playing golf. I went to see an Orthopedic doctor. He took X-rays and couldn’t find anything so I asked him if he could give me a cortisone shot as I was about to take a trip to Europe the following week. My shoulder felt better and I was able to go on my normal routine until the following month when I started having problems with both my wrists.

I went back to my Ortho and he referred me to a neurosurgeon who told me I had carpal tunnel. I was in so much pain that I had surgery on both wrists two months apart. After surgery it was better but not normal so I went to physical therapy. By that time I started having swallowing issues and it was getting worse everyday, you see not only did I have multiple myeloma but I had amyloidosis which is a byproduct of MM.

A month later in the middle of March 2012 my right leg swelled and I had difficulty walking so my good friend who is a nurse told me to go to the ER. They told me I had a bakers cyst and that it would get better in time. In the meantime, I went to my gastroenterologist about my swallowing. He ordered an endoscopy. He found evidence of amyloid but didn’t bother to call me. I went back to my Ortho, he said he couldn’t help me and there might be something systemic wrong with me and gave me the name of an internist (which I didn’t have, big mistake!).

As soon as I got home I called but the next opening was in three months for new patients. At this point I was so sick I was tired, both legs were swollen and my swallowing was getting worse.

My husband who works for the city got me in to their doctor. He ran tests and found high calcium levels, proteins in my kidneys, etc. They had me check in on my birthday in the ER and that is when the oncologist came in and said you have CANCER MM. What is that, never heard of it. My husband and I were shocked, me how can that be. I don’t fit the profile.

They told me to get my affairs in order that I was not going to make it so I essentially gave up too but my kids, family and friends were not giving up. I was on dialysis and I had a feeding tube. They finally gave me Velcade and I responded immediately my numbers dropped dramatically and my kidneys started getting better…on my way to recovery.

Six months out of the hospital my feeding tube came out and my numbers were still declining. I’m seeing the best oncologist who specializes in MM and Amyloidosis. I am now in stringent complete remission without a stem cell. I still go once a week for Velcade and dexamethasone and no signs of bone lesions.

It’s been two years and my future looks promising. There are so many treatments out there and more on the way and having this website gives me hope, I don’t worry as much as I did in the beginning. I know this sounds odd, but I do feel blessed:) Hang in there my fellow patients.

— Lilliana S.

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Myeloma Stories

Martel B. – Oshkosh, WI

I had not been ill almost all of my life and have worked 10-12 hours a day until my retirement in 2006 when I sold my full service station.

In 2011 I started getting very tired much easier and finally went to the doctor. After many hours of testing the hospital sent me to a cancer clinic at a town about 100 miles away but still not knowing anything except I did not have much blood. They gave me 4 units here and I had more at the hospital where the cancer clinic was located. I was 90-95 {662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} plugged with the myeloma so was not making any blood. My kidneys were shutting down and was told if I did not accept treatment that I would probably have about three weeks to live.

I felt sorry for myself and why me etc. for two days and then decided to fight and do the treatments. I read a lot of information on the internet and read books and they were all very negative. I quit reading them and starting looking for postive answers.

I received chemo treatment for several months and started gaining.  I had better blood work and feeling much better even though the treatments were taking a toll on my body. After about 6 months the doctor at the clinic asked if I would be willing to go to a stem cell clinic about 400 miles away to see if I was a candidate in front of a 5 doctor panel. I did this and was accepted to do stem cell even though I was 68 years old. I was able to donate my own stem cells which took about a week in Omaha and then home for two weeks. Then we went back to Omaha to do the stem cell. I spent about a month there doing the stem cell and had a few very bad days. I kinda hated my doctor for talking me into doing the stem cell but am now so very happy that I did do it.

Yes the bone marrow test are not fun as I have done 4 of them . I done the forth one yesterday the 13th of March. My first stay in the hospital was March 28th 2012 which is almost two years ago. I will have the test results back in 7- 10 days but am sure it will be great.

I would be willing to talk to anyone about it and how great it is to have LIFE. I am a firm believer that you have to fix it first mentally. I am back to working almost every day at things I want to do but have to admit that I do take a nap after lunch on most days.

My wife and I have been taking many bus tours and touring the country via our car also. LIFE IS GREAT !!!!! 

— Martel B.

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Myeloma Stories

Carmen M. – Laurel, MD

I was diagnosed in July 2011 after I had a sudden bone fracture in my humerus(right upper arm) while at my chiropractor’s office , and after many exams and bloodwork. . I was devastated. A year prior to this my blood calcium levels had been elevated but neither doctors nor I thought it to be alarming.

Watch your blood calcium levels because it can be an indicator of Multiple Myeloma. My friend Pike who had MM for 18 yrs before passing introduced me to his doctor at the Mayo Clinic in Minnesota-who is now my second opinion doctor. He also took me to a MM support group he attended in Fairfax, Virginia. I attend the Multiple Myeloma International Foundation regional meeting once a year. I highly recommend them. One learns a lot from other patients there and from doctor/researchers and gets hope.

— Carmen M. 

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Myeloma Stories

Vernon R. – Portland, OR

I first detected my smoldering Myeloma in 1993. The local YMCA where I worked out offered CBC blood tests which I tracked on Excel but I was concerned about rising protein and BUN numbers. I talked to my doc who ran further tests and determined my combined Gamma plus M protein spike was about 3 which is twice the acceptable range. My doc let it smolder until 2008 when it started to rise and he told me to get ready for a transplant. Being in the middle of a career and new marriage I wasn’t pleased about this so he agreed to try Revlimid/Dex. The MM responded immediately to it and was driven down to an acceptable level. I am now on a maintenance dose of Revlimid and have been in remission for several years with almost no side effects except neuropathy. So by catching it early and treating it medically I was able to avoid both a life altering transplant or being 6 feet under.

— Vernon R.