Look at this beautiful family!  They look happy and without a care in the world.  They are happy, committed to each other, loving, and in the fight of their lives.  Heather Von St. James has Mesothelioma(an incurable lung cancer), and she and her family have been in a fight that every myeloma patient is confronted with.  Mesothelioma has some of the same characteristics of myeloma that make their fight something that all  myeloma patients can relate with.

It is not common, but where myeloma has 20,000 newly diagnosed cases each year they have 2000, or it is 10 times less common.  Myeloma is incurable (our specialists are starting to question that), and Mesothelioma is incurable as well,but few question this assertion.  We have 50 to 75 multiple myeloma specialists in the USA that understand and are really qualified to adequately treat our disease, while they have 5 at best, and only one that is world renowned.  Our published life expectancy is 4 years, while mesothelioma has a life expectancy of just over one year from diagnosis.  So why the smiles on this loving family's faces?  Because in the face of these odds stacked against them they would fight this death sentence with all of their heart and soul, faith, and family.  This is the story of Heather, Cameron, and Lily.  Cameron has a caregiver blog at the link: http://www.mesothelioma.com/blog/authors/cameron/  This is their story as presented to me by Cameron, and I felt compelled to share it with each of you.


Taking Care of My Wife with Cancer (Cameron Von St. James)

The 21st of November is a day that will always stick in my head. It was that particular day that my wife, Heather, received a cancer diagnosis. We found out that Heather was suffering from mesothelioma. It was on that day that I became Heather’s caregiver. Becoming a caregiver for a person with cancer was not something I expected to be doing. Just a few months before Heather received her diagnosis, we were in celebration mode because our first child, Lily, had just been born. After Lily was born, our focus was on her and the upcoming holidays. We could not wait to spend Christmas with Lily, but the diagnosis turned our world upside down, and our focus shifted to beating this cancer.

After Heather received her diagnosis, the doctor started giving us more information on mesothelioma. The doctor said that Heather would need to go to a specialist in order to find out more information about treatment. We were told that Heather had several options, including a local hospital or a doctor, Dr. David Sugarbaker, who specializes in mesothelioma in Boston. Upon hearing these options, I looked at Heather’s face to see what option she would be interested in pursuing.  However, Heather appeared to be distraught. I jumped in and decided that seeing the specialist in Boston would be the best decision.


For the next few months things were quite difficult and chaotic. Life as we knew it had changed. Before Heather was diagnosed, she had returned back to work after having Lily. Both of us were working full-time positions. Once she received her diagnosis, Heather had to stop working and I began working only part-time. Aside from work, I was accompanying Heather to her appointments and caring for Lily. In just a short amount of time, things started to become extremely overwhelming for me. I also began to feel scared and afraid that my wife was going to pass away, leaving me a broke widower and single father, raising a daughter who would never really know her mother. I can admit that I broke down crying about these things on several occasions. I never allowed Heather to see me this way because I wanted to be strong so that she would feel strong too.

We received lots of support from our close friends and family members. There were even some strangers who were willing to help. I quickly learned to take the help that was being offered to me. The people who helped us also made me feel like I was not alone. I never realized how challenging being a caregiver could be until I actually became one. There is a lot of stress involved with being a caregiver. The best way to get through it all is to accept help and use as many resources available as possible. My life did not go back to what I consider normal for many years. There were a lot of challenges along the way, including Heather’s mesothelioma surgery, radiation treatments, and chemotherapy. There was a light at the end of the tunnel though, and Heather did overcome mesothelioma. Today, over seven years later, Heather is healthy and cancer-free.

I have learned a lot along the way. One of the most important things I learned was to live for the moment, which is why I chose to further my education in Information Technology. Learning to balance caring for Lily and my wife while working helped me to gain the courage to further my education and take that chance. In fact, I graduated from school with honors and was able to speak at the graduation. I would have never expected to be in that position just a few years ago. Learning to believe in myself played such an important role. Heather and Lily were in the audience to cheer me on, and that was the greatest reward of all.

The Minneapolis St. Paul Star Tribune also did an excellent article on the Von St. James family Meso journey and Heather's radical life saving surgery,  which you can read at: http://www.startribune.com/local/east/27512374.html?refer=y   Healthy and Cancer Free, how truly wonderful is that?  As you can see they did the two most important things that anyone can do when confronted with an uncommon and incurable cancer.  They became their own best advocates, and researched all they could, and then found the absolutely best mesothelioma specialist in the country.  They stacked the deck in their favor as best they could and the result was miraculous.  Thank you for your story of love, commitment, and HOPE.  And as always, may God Bless your myeloma Journey/ Gary Petersen [email protected]

For more information on multiple myeloma go to www.myelomasurvival.com

Some recent studies have shown that if a multiple myeloma patient can survive 10 years, they seldom relapse after this time and this could be considered cure.  This happens in about 10% of all cases.  This assertion has been repeated by Dr Berenson, Dr. Hari, and Dr. Vij on three separate Cure Panel Broadcasts. 

However, I think we can take this one step further.  For each year of survival, the probability of survival improves and continues to improve until it reaches the same survival rate for the general population of the same age.  An analysis of the SEER survival rates provided by the National Cancer Institute shows this exact relationship.  If I subtract the yearly survival rate of year 0 from year one,  I find that 23.5 percent of all multiple myeloma patients do not survive, and if I do this for year 1 to year 2 then 10.9 percent of the total patients do not survive for this period.  You can continue this process all the way to the period between year 9 and year 10 where only 2.1 percent of the patients do not survive during this period.  At this point the Social Security Life Expectancy tables report that the average American will die at a rate of 2.15 percent, or at a rate slightly greater rate than the average multiple myeloma patient.  So "The longer you live, The longer you live!"

There are a number of possible explanations for this relationship.  Some may be early deaths for high risk patients, smoldering patients, the advent of the use of novel agents, some patients obtaining and maintaining CR, et al.  However, the newest data that I have seen from the multiple myeloma specialists show 1 and 2 year rates that are much better by 2 to 13 times the rates provided by SEER.  In addition, this SEER data represents an average life expectancy of 4 years where many of the multiple myeloma specialists have average life expectancy of 7 to 10 years. 

So the best three things that you can do to improve life expectancy remain "Multiple Myeloma Specialist, Multiple Myeloma Specialist, and Multiple Myeloma Specialist."   A listing of the world's best can be found at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html.  

Dr. Jan Moreb, a Multiple Myeloma Specialist from Shands at the University of Florida was the subject of a Gainesville Sun article which highlighted his myeloma treatment program.  Kristine Crane a staff writer at the Gainesville Sun provides an excellent article which highlight the superior survival rate and life expectancy of the patients under Dr. Moreb's care.  Kristine interviewed the editor of  Myelomasurvival.com as part of this article, and we were very pleased to be part of this excellent article.   You can find the entire article at this link: http://www.gainesville.com/article/20130106/ARTICLES/130109795?p=1&tc=pg 

Kristine providing the following explanation of the treatment philosophy of Dr. Moreb,  She explains, "He is known for a more conservative approach to treating patients by using chemotherapy drugs sequentially instead of all at once.“Since cancer cells typically become resistant to chemotherapy, by exposing them to drugs one by one, instead of all at once, there is a greater likelihood that the effects of the drugs will last longer,” Moreb said.

Some specialty centers around the country employ the drugs all at once, but Moreb said that not only increases patients' drug resistance in the case of relapse, which is typical in myeloma patients, it also heightens patients' exposure to the toxic side-effects of the drugs, which can be fatal.

Multiple myeloma patients also typically undergo one stem cell transplant — in which healthy bone marrow stem cells are extracted from the patient's bloodstream and re-injected or transfused back into the bloodstream — after the chemotherapy has killed as many of the cancerous cells as possible.

At some centers, patients automatically undergo two transplants, just a few months apart. Moreb collects enough stem cells for two transplants but freezes the cells intended for a second transplant, which is performed only if the patient relapses, he said. This more moderate approach saves patients from experiencing too much too soon, he said."

Best regards and may God Bless your Myeloma journey/ Gary Petersen editor@myeloma survival.com

***Now that the program has aired you can read a summary and find a link to the broadcast if you click HERE.***

The January Myeloma Cure Panel Broadcast will feature Promising New Treatments in Multiple Myeloma with Dr. Shaji K. Kumar of the Mayo Rochester and Dr. Edward A. Faber of the University of Nebraska Medical Center as the featured speakers.  The broadcast will be on January 30, 2013 at 6:00 pm EST.  It is an interactive broadcast, and the callers are encouraged to send in their questions for the myeloma specialists to Priya Menon at [email protected].  These skilled multiple myeloma specialists have recently returned from the ASH American Society of Hematology meeting, and will be discussing information from this meeting  that they deem noteworthy, as well as providing insight into those treatments that they now believe are the future direction in multiple myeloma treatments.

To Register just email Priya Menon at [email protected]

Both Mayo Rochester and University of Nebraska Medical Center have provided survival data to www.myelomasurvival.com and their results are excellent.  You will be hard pressed to find a better dynamic duo  to obtain insight into the future course of multiple myeloma treatment.  Life expectancy and survival rates are certain to continue improvement  with the cooperation, teamwork, and selfless service that I continue to witness over and over again from multiple myeloma specialists.  For additional information on this interactive broadcast, please go to the attached link from Cure Talk.  Link: http://www.smore.com/1cxs-cure-panel-talk-show-on-myeloma  

I will be the co-host for this broadcast, and look forward to providing another great program to the multiple myeloma patient community.  May God Bless your myeloma journey/ Gary Petersen [email protected]

Starting  on 1/9/2013 we will be changing our web hosting company and do not know what  type of inconvenience this will be to the multiple myeloma patient community.    We will be doing this ourselves so we want to apologize for any disruption to the site.  Like with many services we are one of the crummy old loyal customers and  the best rates are only reserved for those great new customers.  So rather than paying 3 times as much to Fat Cow we will be signing up for 3 years at iPage for the same price as one year at Fat Cow.  Sometimes things just don't make sense, but it is what it is!

We have started the changeover and everything seem to have gone pretty well with one big exception.  We have lost the links to the Myeloma Blog from Google and Bing as well as all of the comments on the blog from our readers, but other links are OK.  We will work with iPage to reestablish the blog links in the next few days, but I am afraid the comments are gone forever.  We will keep you posted as the process progresses.  Thank you for your patients and understanding.

Best Regards/ Gary Petersen [email protected]