#MyelomaVoices: Staying Positive is the Only Way

  • August 01, 2017

    #MyelomaVoices: Staying Positive is the Only Way

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This #MyelomaVoices story was submitted on March 8, 2017, by Richard B. from Dana Point, California, who was diagnosed with myeloma in September 2004.

 

Born in Walton-on-Thames, Surrey, England on 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 multiple myeloma. 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) from October 2004 to March 2005. [VAD is an abbreviation for vincristine (V) and doxorubicin (A), which are given as continuous infusions together with oral-dosed dexamethasone (D)]

Initial option was an autologous transplant but again I was lucky to be both at a reasonably young age of 45 and [to] 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%...???

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 multiple myeloma 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 multiple myeloma 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 multiple myeloma 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 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 70s early 80s and was exposed to the hazards of fighting fires and so that may have been a trigger….

I have since learned that quite of few fire service personnel have suffered with multiple myeloma 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 multiple myeloma 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 had TBI (Total Body Irradiation), which is where they zap your whole body for several sessions for three 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 multiple myeloma cells without actually killing you!!!...Like re-booting a computer by wiping a hard disc.

That is why having am Allogeneic 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 does 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 lots 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 ADVICE 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.

**The opinions expressed in this story are solely of the patient Richard B. from Dana Point, California. To learn more about allogeneic transplants, visit these links:

10 Steps to Better Care: Transplants

International Myeloma Working Group consensus statement regarding the current status of allogeneic stem-cell transplantation for multiple myeloma

Understanding High-Dose Therapy with Stem Cell Rescue