Tag: Texas

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Myeloma Stories

Bryant C. – Coppell, TX

I had my first tumor in 2003 at 33 years old. I had the worst and best week of my life in March of 2003. On a Friday, I took my 8 hour professional engineering licensure exam, On the following Tuesday, I found out that I had one solitary tumor, not multiple, and on that Thursday my wife had our first child, my son.

Needless to say, the 4 months leading up to that week were, well, nuts. I broke my back playing golf. It was a hell of a shot, laying up just short of the green from 140 yards out in the trees. I thought I had just pulled something, badly. As I spent the next months seeing doctors, while studying for my engineering exam, I began to realize this is not good.

I have now been treated off and on for 11 years, and have enjoyed every minute of my life. I have had a daughter, remodeled a house, become a Cubmaster, and done many other things that have made life so full. I am confident, especially with the new treatments out there, that I will be around for awhile longer and possibly long enough to see my grandkids.

In general, I have adopted a philosophy that I read in a poker book: “Raise or Fold”. This applies to how you interact with your doctors as well, and your personal level of committment to your treatment. When they recommend something, research it before making a decision. They are mostly all good guys, but you are the client/customer, and it is after all a matter of life and death. If you do not trust one of your doctors, consider it carefully, but leave them and find one you can trust. And most of all, learn when to put myeloma aside, and enjoy life.

— Bryant C.

Categories
Myeloma Stories

Jan – Hitchcock, TX

I was diagnosed in January of 2007 at the age of 53. I had always been interested in health and fitness. I ate a healthy diet and exercised regularly.

My back started hurting, but where it hurt, I thought I had just pulled a muscle. My degree is in Occupational Therapy and I was working as a massage therapist at the time. Things just kept getting worse, but I kept thinking it was just pulled muscles. I can remember coming home from work just exhausted and feeling like the pain was “in my bones” . Then one day when I was shaving under my arms, I felt numb around my ribs. I was going to see my Family Doctor for a checkup in January. This was late November.

When I mentioned it, she suggested an xray of my upper back to make sure as I had been diagnosed with “osteopenia”. I didn’t even make it home and her staff called me to say she wanted me to get an MRI. After the MRI, I went to get the results by myself as I was thinking “pinched nerve”. Needless to say, I had lesions several places in my spine but T3, T4 and my left 3rd and 4th ribs were toast almost. It was a very scary place to be.

After several more tests, the diagnosis of solitary plasmacytosis was made. I decided to go to MD Anderson in Houston as they have a clinic just for multiple myeloma. I was treated with radiation first. Then it came back and I was induced for a stem cell transplant in 2008. Was in remission for almost 2 years and have been in treatment since. Took oral revlimid for 3 years and have now been on subcutaneous weekly injections of Velcade with dexamethasone.

I am considered stage one and am lucky in that even though I have a compression fracture at T3. I maintain a good quality of life considering. My last blood results were exciting as they had to repeat the serum electrophoresis twice as the M protein is now barely detectable.

I hope that anyone who is newly diagnosed knows that this can be a manageable disease and that a cure is on the horizon! I KNOW THAT.

Take heart and get the word out about myeloma as it is still relatively unknown in the general population. I know this was a long story, but maybe it will instill hope in all who are dealing with this disease. My husband has been wonderful. I have now seen my daughter get married and now have a 2 1/2 year old granddaughter and a grandchild on the way! I am blessed to be here to experience all of this! Listen to your body, and if something is not quite right, please check it out. The earlier you find out, the better! Here is to a cure…..and soon! 🙂

— Jan

 

Categories
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

Categories
Myeloma Stories

Nikki – Houston, TX

My Husband was diagnosed in August 2012 with stage 3b Multiple Myeloma. Earlier that year, my husband had been starting to feel really crummy, extremely tired and his body hurt all the time, especially his feet. (He compared it to feeling like having the flu constantly)He’s a pretty big guy and used to work out religiously until he started not feeling like himself.

From January to Mid July, my husband’s health deteriorated drastically. He went from working 12 hour days and then hitting the gym to barely being able to stay awake for more than an hour and lifting maybe 10 pounds.

We didn’t have insurance at the time but I kept hounding him to go get checked. He finally went to a small clinic by our house and they said they weren’t going to diagnose anything but his numbers were very out of sync and he really needed to go to a specialist.

It finally got to the point that the only way we knew what was going on was the fact that he had passed out as he was getting out of our truck to head into work. (He wasn’t able to really drive himself anymore) I rushed him to the hospital on a Tuesday morning and they took him over a gun shot victim (if this gives you any idea on how incoherent and bad he truly was).

That Friday, once we got the diagnosis, his oncologist told us that if he wouldn’t have come in when he did he wouldn’t have made it more than another 2 or 3 days.

It is so important to listen to your body and to find out what’s going on. Please do not hesitate to find out what’s wrong even if your doctor has said it isn’t major; it very well could be!!! Thank God my husband is still here with me today and we are about to celebrate his one year birthday (bone marrow transplant) in April!!

— Nikki

Categories
Myeloma Stories

Amy K. – Abilene, TX

Last year we watched as my mom complained about her hips being sore for several months. She went to her regular doctor who X rayed her hip, saw nothing but recommended she see an orthopedic doctor. The pain in her hips got better but then her shoulder began to hurt. At 61 years old it was easy for Mom to dismiss it as arthritis.

In July (after a couple of months of pain) she fell while putting her swim suit on. My dad and I finally convinced her to see a doctor. Her shoulder was broken from the fall. A dear friend got her in to see a bone doctor at a very short notice.

My mom and sister went in to get her MRI results. We thought the worst case scenario would be surgery for a bad rotator cuff. My dad didn’t even go because we never dreamed it was anything beyond a bad rotator cuff. Needless to say, we were beyond devastated at the diagnosis.

But now, 8 months later, Mom is on the healing end. She’s recovering from a stem cell transplant and is getting stronger everyday.

One thing that has been very frustrating during this time is the lack of awareness in our community. We have found one survivor which has been an answered prayer for all of us, but I do wish there was more awareness and resources available in our hometown.

If there’s anything I can do to spread awareness for others diagnosed I would be more than willing to do it.

My word of advice – never dismiss something as arthritis or other things without getting confirmation from your doctor. Myeloma has a time limit and you need to get to started with treatment as soon as possible! Be aware and be proactive about your health! Blessings.

— Amy K.