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Myeloma Stories Patient

Gifts Emerge

Spring 2011: My primary care physician (PCP) found elevated creatinine and protein in my urine.  I was feeling fine at this “well check-up ” until these test results. Anxiety rose. I felt frantic. The nephrologist believed that I had interstitial nephritis, an inflammation of the kidneys. It resolved somewhat by itself but did not go away. Whew! August 2011: My PCP wisely ordered an SPEP…and bingo! I was diagnosed with MGUS, the precursor of multiple myeloma. I was referred to an excellent, local hematologist/oncologist.

Fall 2011: Lots of tests including the bone marrow biopsy, showing 33{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} plasma cells. I brought my test results to a myeloma specialist at MD Anderson. I did not have any of the “CRAB criteria” or any deletions. Should I be treated? He ordered a test for amyloidosis, which turned out positive. I did not or do not have any signs of amyloidosis. I had active multiple myeloma. I began induction chemotherapy immediately.

With the Revlimid, dexamethasone, velcade treatment, I reached complete remission in 3-1/2 months. I collected and froze my stem cells for possible future use. Happily glowing and feeling well, I stayed in remission for about 4 years using maintenance chemotherapy.  Spring 2016:  My blood markers started to rise slowly and I reconsidered autogolous stem cell transplant (SCT).

Now I am a bit over one week away from SCT at MD Anderson. I feel excited and anxious. I am at peace with my decision and my husband is a wonderful caregiver. My specialist and my transplant team at MD Anderson are excellent and responsive to patients. I feel ready.

Many gifts have emerged on my myeloma journey. The love from my family and friends is overwhelming and joyful. I became an active member of the IMF (International Myeloma Foundation) That is my second family! With their help, I launched the first multiple myeloma support group in New Mexico. Starting with about 10 members, more than 30 people attend most of our monthly meetings.

My co-leader, John, is a wonderful asset for our group. Being a physician himself, he knows many answers. And we always have many questions. The people in my support group are caring, sharing and loving. They are truly exceptional and courageous survivors – another gift.

I have attended several IMF Patient and Family seminars, Leaders Summit meetings and Teleconferences. All of these have increased my knowledge and awareness about MM. As I give my time to these various pursuits, I realize that the gifts I receive are too numerous to count!

And finally the gift of today shines forth. I am living a full life with my spouse, my nearby children and grandchildren, my volunteer work and facilitating a few teacher workshops along the way. I feel blessed. As I go into this transplant, I know that it will be hard work. And I am confident that there will be more emergent gifts in my life.

— Susan B., Santa Fe, NM, USA

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Myeloma Stories Patient

Tale of Two Cancers

When I was first diagnosed w/ Smoldering Myeloma, my oncologist told me that because I was so incredibly healthy and, along with my extremely positive disposition, I would probably die of old age, before dying from Myeloma.

So since I didn’t expect it to have any real effect on my life, I didn’t even look up information about it. In fact, I remember thinking “Smoldering” Myeloma sounded sorta sexy.  Until the fanning of the embers ignited the smoldering into flames of Multiple Myeloma and when my oncologist started talking about the need for a bone marrow transplant—sexiness became an afterthought, because now I was a full blown cancer patient and cancer patient and sexy are about as incongruent as you can get.

In fact, the mere mention of cancer only conjures up fear, because it carries a power like no other disease—it crosses all human boundaries—no one has an exemption—no matter how rich or how good looking or athletic—anyone can be diagnosed with it and sometimes be diagnosed more than once. I know, because Multiple Myeloma is not my first roller coaster ride. However, my first experience didn’t prepare me for this cancer incarnation.

Myeloma is a cancer that no one seems to even have heard of and I go through treatment that has me taking different medicines that have played havoc with my system—in the form of a never-ending flood of diarrhea. I have to sit in a room with other cancer patients, wait for the nurse to poke around to find a usable vein, so I can be hooked up to an IV, spending up to 3 hours getting infusions.

And now I’m doing all the prep, in order to undergo a bone marrow transplant and then possibly more medicine in the post bone marrow transplant maintenance. After which I could go on maintenance program with more of the above treatment. And heaven forbid I may have to have another transplant.

Now this is definitely having cancer, no matter that hardly anyone has ever heard of it.

Now let’s rewind to my first run-in with the cancer I was diagnosed with, lung cancer.  I had never smoked, but I had spent many years doing stand-up comedy, performing in smoky venues—a victim of second-hand smoke.

They removed the lower right lobe of my lung and all the surrounding lymph nodes–no other treatment–no chemo, no medicine-nothing like I’m going through now.

A lot of people get lung cancer from smoking, but my situation really got people’s attention. It was the shock of hearing my story of being an extremely healthy multi-sport athlete—-including being a ranked distance runner, no less; an award-winning comedian, who had performed all over the world—much of the time in smoke-filled venues; never having smoked, but getting lung cancer from secondhand smoke.

Having been a lifelong advocate for issues that could lead to the betterment of our society, often using my ability to make people laugh to successfully get my message across, I started speaking out for the right to clean air, fighting the tobacco companies, patient empowerment, cancer awareness, the need for increased cancer research funding and the using the power of humor to connect with people on all these issues and concerns. I spoke all over the country doing Grand Rounds at prestigious medical hospitals. I spoke at medical schools, colleges and universities. I did keynote speeches at medical, cancer, pharmaceutical and tobacco prevention conferences. I taped PSAs that won the highest awards. I taped interviews that ran on the CDC website. I lobbied on Capitol Hill and met with prominent Senators and Congressional members. I spoke at state & local political conferences. I did literally hundreds of town hall meetings to get smoke-free laws passed. I ran workshops and weekend retreats. And I did literally thousands of TV, radio, news interviews. I was everywhere–on a practically nonstop, non-yielding mission to save and enhance people’s lives.

My having lung cancer turned into a heroic, noble cause that became an integral part of a world-wide advocacy endeavor with me using my ability to use humor to get people to pay attention and absorb the life-altering aspects to what had happen to me–reaching out & inspiring people all over the world to take action for themselves and the world around them. This time, with having Myeloma, it’s nothing like that.

I’m living with cancer, not fighting to prevent people from dying of cancer. This go-round, it feels like I’m a cancer patient, with the unknown of a bone marrow transplant looming in the near future. However, when I was diagnosed with lung cancer, I believed that God always has a plan and now with this go-round–it must be phase II of his plan.

Because, I still have all my requisite skills to make people aware of the numerous aspects one has to deal with when diagnosed and living with cancer. And when people ask me if I am as funny with having myeloma, I tell them, there’s nothing about life—good or bad that I can’t apply humor to and if my Myeloma can no longer be sexy, it can at least be funny.

Mirth + Merriment + Myeloma = a successful formula for using humor to increase people’s awareness about this cancer and research funding. Myeloma is the least known of the blood cancers; it’s like being the red-headed step-child, wearing out of style clothes and talking with a lisp.

However, having been a Black person, all my life, “Myeloma” sounds like the name of a girl that I went to high school with. Sure, she had an older brother Leukemia and older sister Lymphoma, but Myeloma was the popular one.

This time around I have years of experience of successfully making people aware of the challenges of facing cancer and how to get the powers that be to understand the need for research funding. I don’t think it’s a coincident that the two experiences that are universal are cancer and laughter. Not everyone likes the same music or food or sports teams, but cancer and laughter have the power to profoundly affect the lives of any and all people.

Be Blessed—Stay Blessed!

René H. Vallejo, CA, USA

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Myeloma Stories Patient

Staying positive is the only way to go

Born in Walton-on-Thames Surrey England Feb 1960, currently live in Dana Point, California, USA. Diagnosed on September 2004 at age 44.  Never heard of multiple myeloma (MM) / No history in family.  Had lower back pain over a few months which led to paralysis and could not walk so was forced to seek help that led to an MRI which showed tumor in T7 vertebrae, blood work and biopsy showed MM. Diagnosed immediately by first oncologist…very lucky !!!

No insurance cover for USA so paid for treatment at local hospital, initial 21 day radiation and med’s (dexamethasone ) on the tumor to reduce the pressure on the spinal cord which was causing the paralysis.

Flew back to the UK to start six months of chemo (VAD) October 2004 to March 2005.  Initial option was an autologous transplant but again I was lucky to be both at a reasonably young age of 45 and have three siblings so the possibility of an allogeneic transplant was proposed. My nearest in age sister turned out to be a six by six match for my bone marrow which was as near perfect match as you can get……more luck !!!

Doctors explained the ramifications and risks of a full blow allogeneic with TBI (total body irradiation) which along with the radiation I had already had on my spine gave a possible mortality rate of some 36 {662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5}…..???

Decided in April of 2005 to go for it and accept the risk based on the hope of minor GVHD (graft versus host disease) rejection issues due to the good match and the prospect of a better quantity of life without any MM drugs plus a longer survival time. Had transplant in London May/June 2005 with five weeks in isolation in hospital followed by seven months of recovery at my parents’ house on immunosuppressant anti-rejection drug cyclosporine. Only had fairly mild GVHD problems with some skin and stomach issues but major effect was on my eyes which are continually sticky due to damage to the tear ducts so have to live permanently with two types of eye drops, considering everything a very minor inconvenience.

Before the transplant while I was having the chemo/VAD I got a blood clot in my leg which then went to my lungs which I found out after the fact is pretty serious which is why it put me in hospital for a week and on blood thinners for six months. This is something MM patients should be more aware of !!!

Side effects from the transplant amazingly have all been reasonably mild considering the treatments, the worst thing after the transplant was the damage to the salivary glands which made eating very difficult leaving only things which were already wet the easiest to eat.  So I lived on soup and porridge for a while.

As mentioned the eyes were damaged but once the right solutions were found that situation is very livable with.

The hardest thing about the MM journey was being away from home and the stress suffered by my wife as she had to stay back in California. Back ache and not being able to run and get as fit as I was is no fun and the prospect of the unknown future is always in the background.

Lessons learned are mainly about risk assessment. It is very much a personal journey for each person as the circumstances particularly with MM are nearly always different but doing as much research as you can as to the outcome of treatments related to quality of life is very important. Also talking to other people in a support group and getting a second opinion can be helpful.

Staying positive is the only way, once you have been diagnosed there is no going back so moving forward with as good a quality of life and a positive brain is what it is all about. Things are changing so fast in the treatment of MM that is a constant encouragement.

Life, the Universe, and Everything……

Well you never know just what is around the next bend in the road so get on with it and make the best of every day and every situation that arises, don’t let anything pass you by reach out and grab it.

I was in the fire service back in the late 70’s early 80’s and was exposed to the hazards of fighting fires and so that may have been a trigger……

I have since learnt that quite of few fire service personal have suffered with MM so who knows there may be something toxic going on !!!

Update below:

(((((( I had six months of VAD chemo to get my numbers down which worked pretty well.

*** ( During which I had a blood clot in my leg which traveled to my lungs and very nearly did me in … !!! … I believe that with VAD and MM your blood can thicken and if you over stress your system (which I did !!! ) then it may put you at risk of an pulmonary embolism )

*** Then leading up to the transplant I has TBI (Total Body Irradiation ) which is where they zap your whole body for several sessions for 3 days before you get the new bone marrow. Along with that there is also a last dose of chemo, essentially they are trying to kill off all the last remaining MM cells without actually killing you !!! ……. Like re-booting a computer by wiping a hard disc. That is why having a Allogenic Transplant is a HIGH RISK procedure, it is a one way street once you have started there is no going back ??? BE AWARE THAT THE MORTALITY RATE IS HIGH because if the new marrow dose not take your immune system is fatally compromised and survival is unlikely ???………. SORRY TO BE BLUNT THIS TRANSPLANT IS NOT TO BE TAKEN LIGHTLY ……. After the TBI I had two days in which I had two bags of bone marrow from my sister. Then I was in isolation for five weeks while the new bone marrow takes hold ….. Some times during the early part of this time was very odd / difficult / weird ….. difficult to distinguish between night and day, conscious and unconscious. Slowly things got better but being flat on your back for five weeks unable to take real food weakens you a great deal. At the end of this time I had lost a lost of body mass and muscle so was very weak …… essentially I had to almost learn to walk again and just moving a few feet to take a shower was exhausting. I ended up in hospital for six weeks as it took and extra week to get my strength back, they would not let me go until I could walk up to the next floor of the hospital …….. The following weeks I had to visit the hospital every day for checkups and there were some issues along the way but gradually the body recovers. During this time it was very difficult to eat as the TBI had killed off my SALIVARY GLANDS meaning I had constant dry mouth …… I basically survived on Porridge Oats and cream for breakfast and pureed chicken / roasted vegetable soup for supper WITH NO SALT ….. my taste buds were all screwed up and everything tasted VERY salty …… I ended up making the soup from scratch myself as no store bought stuff had no salt …….. To continue I was on the anti rejection drug cyclosporine for over six months and was gradually taken off this …… I had some skin and stomach problems along the way but the only long term GVHD issues were with my eyes …… the procedure killed off a large part of my tear production which left me with dry eyes ….. to this day I have to use a couple of eye drops every day but it is easy to live with. …… SO coming up to twelve years later I can only say for me it worked out very well …… My plan having a sister who was a good match, was to take all the risk in one hit while I was young and fairly strong, luckily for me it has worked out well so far. MY ADVISE TO ANY ONE THINKING OF THIS PROCEDURE IS TO WEIGH UP THE RISK TO QUALITY OF LIFE RATIO VERY CAREFULLY ….. essentially it comes down to being physically able to go through the procedure and having a good marrow match.))))))))))

-Richard B.
Dana Point, CA, USA

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Myeloma Stories Patient

My faith helped me through

I was diagnosed with multiple myeloma the week of Thanksgiving 2015. Stage 2. The doctors say no cure. Lol I’ve heard those words before.

For those who know my story, and have witnessed the move of God in my life, knew that God would show me Mercy and Favor.

I lost my best friend to suicide? God was there.

In 2000 I was diagnosed with an eye disease,  doctor said there was no cure. Declared legally blind for years, then lost my sight completely for an entire year.  God was there. I had cornea transplants in both eyes? I am able to see today because God was there.

I lost my spouse in 2004 after being married for only 1 month? God was there. I remembered being asked by a coworker at that time, how can I love a God like that? My answer was, how can I not love a God like that? No matter what we go through, God is there.

Multiple Myeloma

When I was diagnosed with multiple myeloma I immediately felt lost. Different from anything else that I had experienced. Then I remembered reading a quote. Cancer is a word not a sentence. Then it was time to fight, and my thoughts were when God get ready to move this mountain he will. All I’m asking is that he give me the strength to climb.

Chemo, radiation, side effects, pain, fatigue, sleepless nights. Physically exhausted yet spiritually strong.

I made a decision to have bone marrow transplant in August 2016.  I also participated in a clinical trial which was done the day after transplant. It was explained that you are randomly selected for the trial. And yes I was selected, I call it God’s favor.

This was a very difficult time. Going through that gave a new meaning to the word sick. I had so many blood transfusion that I lost count. Since the transplant and the trial, I am so much better. I’m 6 months out and now on maintenance. I take Revlimid 5mg. Start my immunizations next week. I’ve had 3 biopsys since the transplant, and consults have all been positive, where there were no signs of myeloma. I still get very tired after 2-3 hours. But everyday that I survive is a blessing and a victory. So if you ever feel that you’ve come to the end of your rope. Remember tie a knot and hang on because God is there.

-Cynthia

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Myeloma Stories Patient

Strange and blessed experience

In late 2013, my finding of having Myeloma came as a strange and blessed experience. Starting with a annual checkup. My general physician see the blood test result and suggest that I might have a enlarge liver. After few more test to focus on the liver issue from different angle. One reading from the test result brings to my attention (the IgG reading 6000). A unplanned chatting with my sister-in-law who happens to be a lab technician flagged me this got to be cancerous sign. Luckily, this is not a later stage.

This act of God truly save me precious time seeking measures for defense. I was still working while receiving treatment. The fatigue I encountered made it harder and harder to handle physical demand from work. This process went on for 7 months. Then, I was referred to Stanford for a Autologous Transplantation to put it short: 1) collect my stem cell, 2) kills the cancer cells in my body, 3) infuse my own cell cells back, 4) wait for recovery. in early 2015, I went home for recovery and faced a different life pattern without jogging and mostly vegetarian diet.

I received great assistance form S.F. Bay Area Myeloma support group. This group equips me with very useful knowledge dealing with the Myeloma.

Last week, a friend of mine told me his older brother was diagnosed with Myeloma. I was so happy that I had so much information I can offer.

Female singer Olivia Newton-John once said: Everything, there is a reason. Everything can be a lesson.

Shan Y.
San Francisco
Patient

 

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Myeloma Stories

Karen and John Foster – Kansas City, MO

We took the opportunity to spread Multiple Myeloma Awareness this past weekend at the Kansas City World Wheels Car Show. My husband and I own a 2002 Camaro SS Convertible, our son-in-law owns a Mustang convertible.  He was featured on the front page of The Kansas City Star  on Saturday with our granddaughter. We  put signs on the cars that read “Go Topless for Multiple Myeloma ” #MultipleMyelomaAwareness .

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Myeloma Stories Patient

Be your own advocate

My myeloma was actually caught accidentally when I had a routine urine test because my life insurance was up for renewal.

The result was protein in my urine and they wouldn’t renew my insurance policy until I had a urologist sign off on it. This started a process and journey for me. This lead to a diagnosis of kidney cancer. My kidney was removed due to the cancer and then I almost bleed out (required 9 units of blood). At the time we didn’t know the reason why only that there was a problem. Fast forward 4 years and many, many tests and blood work they have determined that I have Multiple Myeloma.

I have come to learn a lot more about blood than I ever did. The lessons I have learned from this are if you see anything unusual on your labs from the doctor make sure you follow up as you are your best advocate and often the doctors don’t have time or don’t follow up.

In order to truly determine if its myeloma vs other blood cancers (which they thought I had for 4 years) is through a Bone Marrow Biopsy. While a bone marrow biopsy is not the most pleasant experience in the world it definitely isn’t the worst. I think there could be much better communication to explain things as I honestly had no idea what to expect with my first bone marrow biopsy and all the doctors were telling me how painful they are. I went from no bone marrow biopsy (probably due to fear which was unfounded) to having 2 bone marrow biopsy’s done in 10 days.

I am now in the process of learning and educating myself about Myeloma. I’m currently on wait and watch and hope that I will be able to stay at this stage for the rest of my life. There is definitely life after a Myeloma or other cancer diagnosis and having a good positive attitude along with reaching out and helping others is extremely important to your mental well being and I venture to say your progress.

— Rose C.

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Myeloma Stories Patient

Never give up

Hi, my name is David. At 51 years old in 2006 I was diagnosed with Kappa light chain multiple myeloma.

I have had two autologous transplants and one allogenic transplant. The cancer continues to come back.

I currently started a new drug called Darzalex. We do not yet know how it is doing. We have learned to trust God no matter what!

We have a good Oncologist who is conservative in her strategy to fight this disease. We listen to my body and have learned to take a break when you need to. We keep active walking everyday. I do yard work and love to cook sometimes. My wife takes very good care of me keeping me on track with all the drugs needed. We volunteer at our church helping poor needy children around the world. We believe it is important to have a passion with a purpose in life to help others in need. My encouraging words is to never give up. Keep fighting with everything you got! Our goal is for me to get better so we can celebrate our 40 year wedding anniversary with a cruise to Alaska! God Bless.

— David

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Myeloma Stories Patient

Looking forward to a cure

My story is a little different. I went to the grocery store on a Sunday evening to pick up some milk. They were emptying the coolers and it was very cold and I had a huge sneeze. I went home and told my husband I sneezed so hard I think I pulled a muscle. I am an RN and I went to work next day and told my boss my situation. He told me to take it easy. The next day I c/o of pain when I laid down. He suggested I get MRI which he ordered. My report showed compression FX with hemangioma. Further readings told me a compression FX with a hemangioma you should be tested for Multiple Myeloma. This was the beginning of my disease process. All my labs were ok but a slight change in SPEP. Bone marrow was done which confirmed Multiple Myeloma.

I was started on Tx and radiation to my LT hip that showed severe disease in bone survey. I received 5 treatments and 10 radiation treatments to my Lt hip. Following treatment In Jupiter I went to MD Anderson for evaluation and further treatment recommendation. Stem Cell Transplant was recommended and was done September 28, 2015.

I am presently in remission and was restarted on Revlimid July 2016 as maintenance. The people I have met and the information available for patients and their families has helped tremendously. I look forward to being a part of the new treatments and the cure for Multiple Myeloma! We can never give up !!

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Share Your Action

Bill and Jenny of Palm Coast got an article on the Palm Coast Observer

Multiple Myeloma proclamation

Jenny got a surprise when she looked on line at our local paper!!!  She emailed them this past weekend about not writing any articles on Multiple Myeloma Month or the fundraiser that had just been performed and look what they did for us in tomorrows paper!  She is very surprised and happy!!! Take Care!

-Bill

http://www.palmcoastobserver.com/article/fundraiser-held-multiple-myeloma