10th Cancerversary!

Happy Canceversary to me!  It has been 10 years today since I was diagnosed with Multiple Myeloma!
My treatment included high doses of chemotherapy,  Melphalan, Velcade, Thalidomide, Revelomid, and two stem cell transplants.  This kicked me down to “barely breathing,” but kicked Myeloma into a “Complete Response.”   I was on Maintenance medication for about 4 years and have slowly regained my strength since then.  I continue to do blood tests and lab work every three months and scans and a bone marrow biopsy once a year.

To celebrate 10 years my family gathered in Salt Lake City with the LLS “Light the Night” event.
It was wonderful to have my whole family (minus two babies) together reflecting on this journey and rejoicing in LIFE!

34 years together and counting!!!!

                                           

We wore stickers saying, “Kelly’s Kicking Cancer since 2008”

                       
                     

                                                               

I feel healthy and strong and try to keep cancer on the “back burner,” where it can’t take over my thoughts or negatively affect the day to day decisions I make.  I am a full-time teacher, wife, mother, and grandmother and I have so much to be thankful for!
So the big question is, am I cured?  Unfortunately there is no cure YET for Myeloma but good things are happening in the Myeloma research field and also in patient research.
                    Life is Good!

  Healthtree.org is a website and patient research platform that was created by a Myeloma patient and her husband right here in Utah.  Through patients sharing their specific types of mm and treatments with other myeloma patients and doctors around the world, researchers are able to find what works and why it works and then treat patients with the right treatment for their specific type of Myeloma.  This simple, free website uses the power of the internet to share useful information with each other instead of trying to reinvent the wheel with each new patient.

 I don’t know why I have been so lucky at this point to be celebrating 10 years with no maintenance medications beyond my initial treatment but if others can learn from my experiences, I am glad to help.  Please check out this website and see what can be possible by sharing information.

Setting the stage

I was just reading an article in the news about Multiple Myeloma. It caught my eye because it said that 50% of those afflicted perished every year. It caused me to do a double-take. Reading the article, I actually had to laugh as they explained their statistic. They said that 20,000 new cases of the cancer are diagnosed each year, and that 10,000 people die from Multiple Myeloma each year. It does sound like half of those diagnosed pass away, but it simply isn’t so. The numbers are correct, they just don’t apply to the same 20,000 diagnosed. The facts are that people tend to live from three to five years from the time they present the Durie-Salmon Stage III attributes. I make it a point to specify the staging used because the Durie-Salmon method is slowly being replaced by a newer staging criteria known as the International Staging System. Actually, people can live more than a decade from the time the cancer first begins to offer symptoms, but keep in mind as well that there is no fixed time period involved. There are different manifestations of Multiple Myeloma and different people react to it differently as well.

While the number is reducing, physicians have used staging to draw a prognosis for their patients. Actually, staging has very little to do with how long a victim has to live. It’s more of a guide for how aggressive treatment should be, and whether or not treatment indicated. Sometimes leaving well enough alone is better for the patient as treatment can cause the disease to become more aggressive, and even if it doesn’t, treatment entails side effects that can completely destroy the quality of a patient’s life.

How a patient tolerates treatment is another factor in overall survival. Some of the Multiple Myeloma deaths are actually death resulting from the effects of treatment or result from the reduction of immune system protections.There are different stages of treatment: watchful waiting (as usually applied in MGUS cases) or low grade “smoldering” cases, chemotherapy, radiation, and stem cell transplants. Different chemo agents manifest different approaches to slowing or eliminating cell growth, and each have different response characteristics –and different side effect manifestations and intensities. Radiation is likely the most benign of treatments in terms of side effects, but then it works by killing the cells of both the infected marrow and the bone material itself. A stem cell transplant is an all out effort that uses radiation to wipe out virtually all cells in the marrow and replace them with unaffected cells. SCTs have a very good rate of success, but they also pose a huge risk because they leave the patient, for a time, with no immunity. SCT patients never fully regain their immune system functionality, but more than enough to lead a fairly normal life. Understand that along the way, the weakening of the body in times of treatment also poses risks which are, at time, lethal.

So what’s the truth? We know that the newspaper article which spawned these comments on my part is wrong. Fortunately. That’s a pretty grim prospect they describe. I would say that those who have reached the D-S Stage III level might be looking forward to seven years or more. Depending, of course, on how well their treatment was tailored to their needs and whether or not a secondary cancer or other issue was raised in that treatment. Deep Vein Thrombosis (blood clots) and embolisms aside. So the answer has to be a clear,head held high declaration of “I don’t know.” But history suggests, especially with an improving choice of therapies and symptom clinics, that the idea of three to five years is depressingly conservative. It sure as heck isn’t 50%.

At the time I was diagnosed in 2008, there was a one-third chance I might take no treatment benefit and die in three to five years. There was also the possibility that I might show a partial response to therapy and extend that to eight to ten years. Last, I might have achieved a remission and looked forward more than a decade of living, and with a decent quality of life. If one wants to apply a standard deviation seeking bell curve, we have a 33% chance of dying in the 3 to 5 year period. Surviving that lapse, we can milk that to a 45% chance of perishing in 6 – 8, and beyond, no one knows for sure. Myeloma tends to stage more highly in the elderly who live to a reasonably standard age.

My point is, no one can provide an accurate expiration date to us. Like the numbers bandied in political contests, the numbers are often specious constructs of straw dogs. The best way to respect them is to ignore them.

Three Years Of A New Life – A Carers View.

As Hamada approaches three years since his Stem Cell Transplant which undoubtedly saved his life, we are eternally grateful for the extra years he has obtained from this procedure. So many of us debate about which way treatment for Multiple Myeloma should evolve. What drugs to start as front line treatment, what choices of drugs to continue with, in an effort to help and support. Even with the risks that most carry, for the many problems that for most MM patients do arrive at some time or another.
Should it be the smallest amount possible? Should you be trying to support and protect with many of these not always proven drugs as Hamada has done and continues to do, or should you go it alone?
Then what about the problems that many of these drugs can bring to someone who is now so vulnerable. What is the right course of action to take? Don’t we all ask this question at the beginning of treatment. It seems there is such a fine line to balance the needs of these drugs and the damage that some may do. It is indeed a complex issue and one which must be constantly monitored by the specialists and also through the watchful eyes of the caregiver. How important to note these sometimes subtle changes in a patient, to try to assist your consultant with good clear voicing and so one day all knowledge gained, will go forward to finding a cure for this most complex and difficult of diseases.

Ideas have changed even in the four+years that we have been on this journey. We have listened and read of new transplant procedures coming to the fore in parts of America, where they are now very hopeful and talk of a cure. Still, looking back on the past four years of treatment for Hamada, there was really no choice but to proceed to SCT as quickly as possible. His kidneys were failing, he had succumbed to two bouts of pneumonia, one so severe that his body was shutting down and we knew this was really his only chance to gain extra time. Hamada’s spine was already damaged and he was in agonising pain which thank goodness was helped with radiation. As soon as he recovered from this, he fought hard to reduced the Para Protein as quickly as possible and to get to start his ‘new life’.

I have read so much about MM over this past four years and four months, learning as much as any lay person can grasp from many different areas and from the voices of many other sufferers worldwide. I have been grateful for all the knowledge gained from good listserves such as ACOR and from fellow sufferers of MM and carers alike.Their blogs have given me a good insight into how MM affects/unfolds in so many very different ways for each patient. For sure, no one with MM is the same, treatments will be different for all. Some do better than others as one type of chemotherapy seems to work for one person but not for another. Many appear to remain in remission or continue with very low PP for many years. How different we all are.

I am a poet not a medical person, so it has been the biggest learning curve of my life. Still my thoughts right at the beginning of this journey and also now, were that if I could record and write just the way our personal journey unfolded, using my words in the form I know of poetry. Just telling of my feelings of these past years may help other carers to know of the fears, sadness, the coming to terms with, and all that a Carer feels, that invade thoughts daily in an effort to try to help loved ones. Perhaps this blog may help others who are just starting their journey along the same path, for others it will not, unique as we all are.
For carers who read my simple poems will know, that each tells a story of that particular time in this journey, just as the changing seasons tell us what is happening daily. To convey my feelings in this fashion, also helps me to remember, just how I felt at the dates show on each poem.
Perhaps for some this is a strange form to write a diary of events, but MM is a complex illness as we all are and it is perfect for me, thus enabling me to remember every minute of it all and to free the emotions that often fill this time.

Hamada is continuing well I feel with Revlimid, now on his second course, not having any side effects that he cannot manage. Of course he is more than weary, managing his maintenance drugs daily and the dreaded 40mg of Dex weekly along with Revlimid, always grateful for these past extra three years, which many times prior to the SCT we never thought would be possible. I am aware of course that this is not always the way to proceed and for some if they are otherwise well and not with compromised kidneys or bone lesions, will not choose SCT until all other avenues have been exhausted.
There is no right or wrong way that I can see, only that each person should be treated in their own unique way, as symptoms present themselves and by good valuation of bloods and careful monitoring of precious bones, not from some ‘set out’ protocol. Still what do I really know? only that dear Hamada is still alive after a very poor prognosis and doing dare I say ‘fairly well’.
Stay well, all who read this post and continue to make good choices as I continue to record this journey in ‘poems of love’
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