Category: Myeloma Stories

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Myeloma Stories

Patricia H. – Troy, VA

In November 2006 some results discovered in routine blood work by my primary care physician caused that physician to refer me to an oncologist for further testing/diagnosis. After meeting with the oncologist, additional lab work and a bone marrow biopsy were performed. These results led to a diagnosis of pre-malignant multiple myeloma. Since then I remain under the amazing care of a capable oncologist at the University of Virginia’s Cancer Center.

Every six months lab work is repeated as a routine part of a follow-up examination with my oncologist. When I received the original referral, I almost didn’t make the appointment with the oncologist as I previously ovarian/cervical cancer in 1985 (hysterectomy/ovaries removed) in 1985 and believed my good fortune since that time had been taken away. Fear is a very powerful thing, and while I ‘almost’ let it paralyze me, the more I read online and the more I talked to others, I knew I had to get past the fear and make that appointment.

Now I look forward to those appointments and lab results, they are the markers in my life that give me hope and strength and joy in going forward with everyday life. As of this writing I remain pre-malignant. Medication/treatment have not been recommended yet.

Please if you are reading this and even ‘think’ you might need to seek opinions/testing/help with understanding and living with any state of MM, take some action, take  control of your life, be your own advocate. I learn something each and every day about this disease and I am no longer frightened, quite the opposite, the more I know and understand the more empowered I feel. Something else to remember is that you are not alone in this.  There are people like me who wake up and go to bed each day praying for all those facing MM.

— Patricia H.

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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.

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Myeloma Stories

Debra S. – Westbury, NY

I was diagnosed in 1996 at the age of 36. I was very young at the time to be diagnosed with MM. I had just had my second child and a portion of my back kept feeling numb. I thought it was from holding the baby. I went to the doctor and after an xray and blood tests it was determind that my protein was elevated. Further testing determined MM.

I had never heard of MM. I thought they were talking about Melanoma. I was sent to a hematologist who confirmed the MM and was then sent to a specialist. I was really at the beginning stages… more of an MGUS. I went for many opinions and they all confirmed the same thing. As time passed the levels changed ( I am IGG Kappa) and my IGG kept creeping up slowly. It was then determined that I was in a Stage 1.

Now fast forward 18 years and I am still in a stage 1. My IGG fluctuates between 3500 and 4200. I have had no treatment other than Aredia which was stopped a few years ago. I have harvested my cells for a future transplant if needed. I go every 6 months for a follow up and have a skeletal survery once a year. I remain a stage 1 at 54 years old and hope and pray that old age gets me way before MM does. Many of the MM friends I made back when I was diagnosed are gone.

It is comforting to know that the treatments they have now are much more advanced and although there is not a cure yet… and I emphasize yet because I know there will be one soon, people are living much longer and MM has become more of a chronic illness. I just wish some of those friends were still here to see the changes. I know MM effects everyone differently. I have been extremely lucky and I am thankful every day for that. I pray for long remissions and cures for everyone with MM.

— Debra S. 

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Myeloma Stories

Hardy J. – St. Augustine, FL

I was diagnosed with Multiple Myeloma in 2003. Fortunately, my doctor was able to diagnose me fairly quickly.

My first research on my newly acquired disease indicated a life expectancy of 2.5 years average. I sat in front of my computer numb. But I learned quickly that much that is on the web is outdated. The 2.5 year figure came from studies done in the early 1990s and published in 1998 – before Thalomid emerged as the first of the novel therapies.

LESSON 1: The web is extremely valuable but you have to be very careful with it. Read dates, cross check, talk to your doctor. Talk to IMF hotline. I went on Thal/Dex immediately. Results were astonishing. My urine protein dropped 97{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5}. CBC values came to normal, creatinine dropped from 3.8 to1.1. But this success may have created a problem. I needed to fly to Berlin for the International Whaling Commission. After returning home I developed a bi-lateral deep vein thrombosis – blood clots. I called the IMF and learned the DVTs apparently came from the combination of flying for ten hours and the detritus of the dead cells killed off by the meds.

LESSON 2: When things like this happen call the IMF and get their input. I then began filming a special for PBS on dolphins. First stop Norway to film killer whales under water. The dex helped a lot. I had huge energy and we made a great film entitled “The Dolphin Defender.” I’ve remained in a stable high quality partial remission for 11 years and moved toward relapse only twice – each time when taken off meds for 16 months.

LESSON 3: Do not take vacations from meds. For more info on this see lesson 2. Another lesson I’ve learned is that you must know as much as possible about the disease. As marvelous as many of them are, doctors are often stretched thin and have many patients. They can forget or lack the organization to do things like schedule bone scans or other tests. I had, on one occasion, to point out to my oncologist that his lack of action when I developed bone lesions was unacceptable. He wanted me to continue untreated after several lesions developed. I called Dr. Durie at IMF and he got me back on treatment which knocked out the lesions and got me back into remission.

I live today in St. Augustine Florida with my wife, Deborah, my dog Chou Chou, and my cat Gracie. I don’t have the energy I once had but I continue to do the work I love and have recently take up painting – at 70 years of age.

— Hardy J.

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Myeloma Stories

Ronald C. – Bradenton, FL

I was diagnosed with Multiple Myeloma 9 years ago. It was a major shock to me, and of course I went to the internet for information. Seeing that the average life spam with MM was 3 years, I was ready to die soon.

Then, my oncologist said he would make sure I was going to live for a while. He put me on Thalomide for a year, but my IGG was still high. Next was infusions, and some powerful ones at that. I had to have ice on my hands and feet while on chemo. I was losing weight, skin off my hands and feet, and told my doctor I would be better off dying than going through that. He then put me on and old fashion oral chemo, Alkeran, and it worked. My IGG would go down, then I would be taken off, and back up it went. I did this for about 4 years, and he became worried that I could have other problems being on and off. He then put me on Revlimid, a maintenance drug. My IGG went from close to 8000, down to 948 , and it has stayed there. (The cost is unbelievable, $9200 for 21 pills). I take one a day for 21 days, then off 7, then start the 21/7. It works.

9 years, feel great, no problems, and expect be around for many years. There are so many new medicines around that seem to give hope to everyone. I have not had to have a Stem Cell or Bone Marrow transplant. My doctor is an is a great doctor and he cares about how I am doing. Plus I have a great God, and prayers do work. Be encouraged. It looks like the future is looking better all the time.

— Ronald C. 

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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

 

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Myeloma Stories

Maria – Scottsdale, AZ

I was dx 8/11 induction therapy and radiation on original lesion then SCT 4/2012. I am iga kappa was put on revlimid 3 months post SCT but was allergic to it, so it was stopped. No treatment in cr for 18 months, then the beast returned 12/2013, decided to go on a trial, it is pill form mln9708 at mayo clinic, I have responded very well, after 3 months I am in vgpr, flc is normal, iga is normal and no m spike, excellent considering my myeloma was raging in dec.

I still have trouble at times accepting that I cannot be cured, the hardest part is the difficulty in not being able to make plans, but I am grateful for the time I have to share with those whom I love. I appreciate life more.

 — Maria

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Myeloma Stories

Jo M. – Omaha, NE

I was diagnosed in August 2002. I was 67 years old and I am now 79 years old. I have been receiving treatment since that time–as my numbers get to a low point, I get a break from chemo–sometimes as long as six months with just monitering every 6 weeks. I have wonderful medical direction, and so happy to have been able to watch my grandchildren grow. The youngest will graduate from high school in 2015–I plan to be there. I am so thankful my internist discovered my illness in a routine physical and sent me to an oncologist immedicately. I appreciate newsletters and information I receive from The International Myeloma Foundation–Thank you!

— Jo M. 

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Myeloma Stories

Richard W. – Waialua, HI

I don’t know if my experience will help anyone, but I’ll tell it anyway. I was clinically diagnosed with MGUS ten years ago, and MM three years later. Yet I have never had any symptoms. I am monitored every three or four months by my oncologist to see if my immunoglobulin or free light chain levels have changed. They have, but not significantly enough to cause symptoms.

I have taken reishi and coriolus mushroom pills at various times, as well as a 5-ingredient Chinese soup (daikon with leaves, carrots, mushrooms, burdock root, and water). Don’t know if any of these have been effective, but all my skeptical oncologist will say is: “Just keep on doing what you’ve been doing.” I should note that while I have had no symptoms from the MM, I did have symptoms from non-Hodgkins’s lymphoma which has been successfully treated with six months of chemotherapy.

I think the key is to remain optimistic,and do research on both conventional and alternative therapies that might prove helpful.

— Richard W.

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Myeloma Stories

Cliff B. – Mesa, AZ

I am a retired Navy Hospital Corpsman who served ten of my twenty years in the military, assigned to U.S.M.C. combat units.

During my career, I served three tours of duty in Vietnam with the first being on ground with the Marines in 1965-66. During this tour of duty, our unit (as well as many others) were sprayed with Agent Orange.

I did not have any symptoms of Multiple Myeloma until approximately 2008 when my routine annual physical examinations showed that I had a decreased iron. In treatment for this condition, the doctor prescribed Vitamin C and Iron tablets daily. After one year, the same iron deficiency continued and they doubled the dosage of Iron tablets.

In 2010, I requested an expanded blood panel for my annual physical examination and was advised that I had Multiple Myeloma. The doctors took a “wait and see” approach for the first year and called my condition “Smoldering”. After one year, the treatment changed and I was started on the CyBorD chemo treatment program for a year. I was worked up for a self Stem Cell Transplant just prior to Christmas 2013 and at the last minute, this option was taken off the table.

I continue today on Revilimide chemotherapy daily and a Dexamethasone (steroid once weekly) for 21 days each month, followed by a 7 days off medications, for my body to rest.

I continue expanded blood screening at the end of each month and have also been prescribed Procrit which I self inject to keep my blood level in check and not have to take whole blood transfusions.

I feel good however, do have some side effects from the medication. I would like to think I am in semi-remission at present and pray that a cure for this disease may be found in my lifetime so as to extend my life.

— Cliff B.