Author: MyelomaActionMonth

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Myeloma Stories

Aaron J. – Huntington Woods, MI

I have always been “in shape”. Lifted weights, did mild but effective aerobics, watched what I ate and otherwise maintained a healthy lifestyle. So when I began experiencing back pain (at age 49), I chalked it up to a creeping couch-tater slow-down.

As weeks progressed, the pain became acidic and was incapacitating. After having a CAT-Scan, I was diagnosed: Stage 3 Multiple Myeloma. Suddenly, everything changed. I was initially admitted to a fine orthopedic, standard surgery hospital who recommended a course of treatment but as my condition worsened (couldn’t walk, sit, or lay down without excruciating pain) the docs at this hospital seemed to hedge on starting treatment. Thankfully, my wife called around and was we were introduced to Dr. ‘J’ (Jakobowiak) at the University of Michigan Cancer Center. Not only was Dr. J’s knowledge superior to the initial consulting we received, he went to great lengths to get me admitted into a clinical trial exploring a new treatment for multiple myeloma at t U of M.

It’s been a little over 5 years and a long walk back to an almost normal life. My myeloma levels are at near zero in my quarterly checkups and I am in improved health. No one really has the same experience with this disease, and I was grateful to have gotten into an effective treatment program. I couldn’t say enough good things about Dr. J, the U of M, their staff, and my wife Anita for finding these people who were knowledgeable and determined to find any way possible to help me and many other folks I met undergoing treatment there.

— Aaron J.

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Myeloma Stories

Maura R. – San Diego, CA

My mom was diagnosed with multiple myeloma over 8 years ago. It was a real shock for our family as we have never heard of this type of cancer. After speaking to the oncologist he told me she probably had two years. It was terrible news and there is no way I was going to mention this to mom who hardly speaks English.

So I started doing my research about multiple myeloma and consulting with different oncologist. We made a decision to  proceed with a bone marrow transplant. My mom had two bone marrow transplants and that kept her off chemo, steroids and zometa for over 2 years.

She was living a normal life unfortunately it started again but for the past years she has been on 10mg of revlimid, steroid and every 3 months she gets zometa Fortunately what has helped the most is her positive outlook and a desire to live a normal life, she is a fighter and she is not letting this cancer take over her life. We just had our oncologist appointment and my mom is doing amazing. Every day I wake up thankful of how well she is doing.

— Maura R.

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Myeloma Stories

Verne S. – Souris, Manitoba

I was diagnosed in January of 07.  I was put on dexamethasone for about 1 to around 20 but started to climb topping out at 47 when the plan was for an ASCT. But from chromosome test it was revealed that I was 4:14 IGa which apparently does not do well with ASCT.

Previously I was harvested for stem cells and was fortunate enough to be enrolled in a clinical trial mainly using velcade and dex. This worked extremely well bringing my protein count down to 0 complete remission which lasted almost 48 months.

I thought I had it licked but I knew I hadn’t.

I became resistant to velcade and my protein began to rise again reaching 13 when my doctor felt something should be started. I am now starting my 4th cycle of lenalidomide and dex and after the 3rd cycle has my count down to 4.  I have several concerns at this point. I do not want to become resistant to lenalidomide as I have already do velcade because at present there are the only two classes with pomalidomide and carfilzomib. I guess as options but they are of the two classes previously used.

I wonder about an ASCT even though it does not work as well with patients who are 4:14.But it would save the revelimid as I would have not become refractory to it yet and it could hopefully be used when the effects of the ASCT quit working. I have talked to an ASCT specialist who said that he would do the transplant but it was my decision. I really feel my regular doctor and the specialist want to continue on the revelimid dex. I am  struggling with a decision as I am really not knowledgeable to make it. I am 66 years old and fear if I wait for the lenalidomide to stop working and then want to go with the ASCT, I could be 68-69 years of age and the ASCT could be tougher.

I am not sure this is the kind of story that you wanted in this segment but if I could receive any kind of help from 4:14 patients who have faced this dilemma or any other help I would certainly be appreciative.

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Myeloma Stories

Candace B. – Aurora, CO

I was diagnosed with Multiple Myeloma after several months of increasing back and leg problems and pain. The problems were first tied to an exercise injury I incurred, but as the symptoms increased, I was referred to orthopedic physicians.

I sought a second opinion as well, and none of the orthopedic doctors seemed to consider anything other than back/disc issues. No one suggested a blood test or to see a general practitioner.

I finally decided on my own to seek a new internist, and right away she performed a multitude of tests, including extensive bloodwork. Of course when these test results came back, the diagnosis was very clear. Upon diagnosis, I was in acute kidney failure, with severe bone damage and anemia, etc.

While it seems that my disease advanced very quickly, my doctor believes that just catching it sooner could have presented some of the significant problems.

My advice is that if you are experiencing back pain or other body pain that isn’t easily diagnosed, or unexpected fractures, please be sure to include blood testing to rule out Multiple Myeloma. Especially for women, many doctors may just assume that some stage of osteoporosis might be the cause. Perhaps understandably, most doctors just don’t have the illness on the top of their minds because it is still fairly rare.

Best wishes to everyone and thanks for reading this!

— Candace B.

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Myeloma Stories

Grace W. – Greenville, TX

I didn’t suspect that I was sick with an incurable disease. I mentioned I had a backache and was tired, but I was a nurse on the night shift so I didn’t think anything of it. Routine lab work revealed an elevated total protein, which led to a series of labs and finally a bone marrow biopsy. By then I was expecting the diagnosis of Multiple Myeloma, but I wasn’t ready for the news of having a rare, angry and aggressive form that required immediate treatment.

I was diagnosed with Plasma Cell Leukemia at age 49 in Oct 2012. Inpatient chemo began the following week, along with 4 transfusions of packed red blood cells. Induction phase consisted of 3 rounds of VDT-PACE chemotherapy that put me back in the hospital three other times for neutropenia and nausea and vomiting.

Since an auto transplant was planned, my 4th round of chemo was CyBorD to allow better results at the time of harvest. I had a complete response which was quite remarkable as my tumor burden was high. Stem Cell transplantation was the next phase of treatment. A week later, I was at my transplant center preparing for Auto Stem Cell Transplant 2/22/13. The doctor wanted to do an allo transplant but had no matches, so we proceeded with harvesting. The neupogen did not mobilize my stem cells quite enough, so I received Mozibil which worked very well. Watch out for the diarrhea! My transplant was uneventful on 2/22/13, but N+V continued to be my nemesis for months to come. I had several transfusions of platelets, potassium and calcium. C-diff kept me in the hospital an extra week. I was finally back home in about 6 weeks.

Three months later, I spent another week in the hospital for pneumonitis and hypoxemia. At +100 days, my blood work and bone marrow biopsy results showed that I remained in a complete repsonse. I am now on Revlimid 10 mg for maintenance and doing well.

Now a year later, I am back to work one day a week as a nurse and getting back to normal activities. Fatigue and back aches are tolerable. I am THANKFUL for my excellent doctors, family and friends, the local IMF support group and my Savior, Jesus. I was never alone and I knew I was loved and cared for. So keep a positive attitude! Don’t believe everything you hear or read, we are unique. Even when the odds are against you..keep fighting! God is GOOD. I am living proof!

— Gracie W.  Plasma Cell Leukemia Survivor ’13

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Myeloma Stories

Rosalie – Staten Island, NY

My Husband was diagnosed in Dec, 23, 2011 that was our Christmas present finding out he had this rare form of cancer Mulitple Myeloma IGa …He had very bad back pain in previous months and finally his MD decided to take a special test and it was confirmed he had 4 fractures in his spine from mulitple myeloma.

He did radiation plus he had the surgery on his fractures which cause him to lose height 6 inches and it compromised his lung space. In the months to follow he had pneumonia and had to be hospitalized at least 4 times. His doctors put him on chemo and at that point it was one chemo after another they all started out doing him good but eventually stopped working.

Then in 2013 they decided to do a stem cell transplant they harvest his blood but they didnt do it because again he was having issues with his lungs. He then started taking Pomalyst with other drugs and that stopped working then he was put on bendamustine for 6 months and that drug just was not doing anything special with his numbers. Finally they did his transplant this year in February. He stayed in the hospital for 16 days and his recovery went well. He is now at home still feeling weak and having bad pains in his knee which I am hoping its part of the recovery for him.

Its been a very long journey and at times he gets discourage which I can’t blame him. No one realizes how your life is turned upside down and the things we take for granted are no longer available to us. By that I mean going out to dinner with family or friends, vacationing or just being able to spend some timewith our grandchildren , we are always afraid of exposing him to someone who has a cold or cough and with his lung issues and his immune system he can not be around anyone who is sick because that can be deadly to him ..We now pray that his stem cell transplant works and that one day soon we will get back our lives ..I pray for anyone who has cancer and say extra prayers for the people who have Multiple Myeloma.

— Rosalie

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Myeloma Stories

Cherish G. – Manila, Philippines

I have shared a detailed timeline of my MM story in my blog. I hope it can give inspiration to others. God bless. http://www.gallea.com/MMStories/Active/Garcia_Cherish_S.htm

— Cherish G.

 

Categories
Myeloma Stories

Alina C. – Los Angeles, CA

I am Alina and I would love to share our story. My husband Keith at the age of 50 was diagnosed with multiple myeloma last October of 2013. With 4 children, ages 3 – 17, one person income and a future that we had planned, we were devastated to learn that he got an odd incurable cancer. We had never heard of this cancer before so it was more scary and confusing and we had no idea what to do or where to turn.

What first was a pain in the arm, turned into a life changing event. It was on October 4 2013 when we learned it was a large tumor, further testing and fighting with insurances and getting answers.

It took us a month to find out that he had Multiple Myeloma. So we searched and searched online, finding out misleading information that only scared us more, doctors weren’t giving us definite answers we needed, and then I searched and found a Multiple Myeloma group, a wonderful group with beautiful people full of life. We spoke to people and realize wow, we aren’t alone, and there is time to fight, and it isn’t time to give up and life will go on.

After agonizing pain in his back, chest, legs, it was scary to think everything will be fine. Finally getting treatment Thanksgiving week, things looked better, but it was definitely a roller coaster, and it still is…….. but with the fighting, different health regime we do and with the chemo combo of Velcade, Revlimid, and Dex. His Myeloma cells have been cut in half, in 4 months. He started at 90{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} myeloma cells in his bone marrow.

I could not be more grateful for the support, the knowledge shared to us, the doctors, and everyone who has helped us get through the first couple months. We know there is a long road ahead but we will keep fighting, I will keep learning and bringing awareness to others. I would love to help the best I can because no one should feel scared alone. Don’t give up, Don’t give in to the fear of it, just be strong and know there are people fighting along side with you.

— Alina C. 

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Myeloma Stories

Michael S. – Greenwich, RI

Now closing in on 8 years living with this disease, I must thank my family practitioner for noticing low hemoglobin readings and elevated creatin levels when I was 54. She recommended a Hematologist/Oncolgist as well as a Nephrologist (I am also a Diabetic) to find out what was going on. It was quickly discovered I was in the very early stages of Multiple Myeloma. By dealing with this (chemo and transplants). I’ve been ahead of the disease and remain in pretty good health. I feel it’s imperative to have a good physician who leaves no questions unresolved. That’s where it all began for me.

— Michael S. 

Categories
Myeloma Stories

Donna W. – Taylorsville, UT

I was diagnosed with MM September 2, 2010, after having a kidney biopsy. I had bilateral hip replacements earlier that year and a septic hip followed, requiring three surgeries to clean out the infection, and 6 weeks of IV antibiotics. I also lost a lot of blood during each surgery, leading doctors to refer me to a hematologist which I never did follow up with:( As my kidneys were being monitored due to the IV antibiotics, it was discovered I was having kidney failure; ultimately what led to the biopsy.

So it was serendipity that I was diagnose so early and could begin treatment immediately (within 4 days).

I had 2 cycles of Velcade and responded extremely well. Still, it was recommended that I have an autologous bone marrow transplant to give me the possibility of a good long treatment-free period, as well as keeping Velcade an available option for the future.

I had the stem cell transplant December 29, 2011 which was largely uneventful. Ya, I had the miserable digestive issues relating to the Melphalen, and was lethargic (mostly an effect of the antinausea meds). I did develop a pretty bad cold while in hospital – actually progressed to pneumonia, but the antibiotics, antifungals, and antivirals I was given, along with the powerful antinausea meds made it bearable.

I returned home bald, and wearing a hepa filter mask but continued to be around family and go out occisionally to grocery shop. I had some persistent fatigue but gave myself the courtesy of recognizing what I’d just been through and cut myself some slack.

Slowly I got back to being myself, and the 90 day and 1 year check-ups revealed a deepening partial response at first to what is now considered to be remission.

It’s now March, 2014 and I suffer really no effects of the Myeloma, but the chemo did leave me with some neuropathy (tingling and sensitivity primarily in lower legs), and occasional “chemo brain”. A small price to pay for the life I’m living.

I’m optimistic about my remission, and about future treatment options, and most of all, the innovations and progress in treatment options and ultimately a cure.

 — Donna W.