<![CDATA[Multiple Myeloma - Survival Rate Statistics by Hospital - Myeloma Blog]]>Thu, 21 Sep 2017 10:19:48 -0700Weebly<![CDATA[Dr. Ola Landgren Of Memorial Sloan Kettering Discusses MRD Testing As An End Point For Treatment And Research]]>Sat, 26 Aug 2017 17:16:30 GMThttp://myelomasurvival.com/myeloma-blog/mrd-testing-for-myeloma-dr-ola-landgren-of-memorial-sloan-kettering-will-be-the-myeloma-expert-guest-on-cure-talks-83117-at-6pm-estPicture
Dr. Ola Landgren of Memorial Sloan Kettering Cancer Center in New York was the myeloma expert guest on Cure Talks 8/31/17 program.  CLICK HERE to listen to this Cure Talk, and his answers to questions provided by the Cure Panel and listeners. 

MRD testing just may be one of the most important initiatives in the area of treatment and research for myeloma, and Dr. Landgren has been at the very forefront of its development. Can MRD be used as a new endpoint for treatment??

One thing that has hindered progress in myeloma treatment is the lack of a test for myeloma which had the potential to be used as an indicator of disease cure.  We had M spike tests, light chain tests, and bone marrow tests, all of which we came to understand were not sensitive enough to ensure the myeloma was truly gone.  Other diseases like leukemia had MRD(minimum residual disease) tests, which were sensitive enough to be used as a confirmation that your disease had been eliminated if you were MRD negative. The treatment had been successful in eliminating the leukemia and there was a high probability if it stayed that way for 5 years, you were in fact cured.   No such test has been developed for myeloma, and being incurable treatments were thought in most cases to allow an undetected residual cancer to remain in your bones and bone marrow.  We were never told we were in remission which would lead to cure, we were told we had a CR(complete response) and later with improved testing a sCR(scringent complete response).  However, the many new drugs and drug combinations have improved the depth of response to treatments and a more sensitive test was now felt to be of far more valure.   In Europe, they had been working on tests which would have much greater accuracy, with the hope of duplicating the success  MRD testing had achieved with leukemia.  

Both the MMRF and IMF have been working with the worlds myeloma specialists community to develop a test which will be able to perform to levels sensitive to find 1 in 1 million plasma cells in the detection of myeloma cells in the bone marrow.  It is felt if we can do this and absent of bone lesions, where myeloma can hide outside the marrow, this may just be the measure we have been looking to achieve.

Dr. Ola Landgren providing us with his knowledge and incites into myeloma testing and MRD test development, differences in MRD accuracy, types of MRD tests, as well as the limitations of testing of the bone marrow and its heterogeneity.   Please do listen to his entire broadcast because MRD will become a key part of the new future of myeloma treatment and cure.


Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1



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<![CDATA[Multiple Myeloma 2017 Update - Why Do People Beat the Average Myeloma Life Expectancy Prognosis?  Or How To Improve Your Multiple Myeloma Survival Rate!]]>Wed, 16 Aug 2017 07:00:00 GMThttp://myelomasurvival.com/myeloma-blog/multiple-myeloma-2017-update-why-do-people-beat-the-average-myeloma-life-expectancy-prognosis-or-how-to-improve-your-multiple-myeloma-survival-ratePicture
I updated this post more than two years ago, and it has been very helpful to many in the myeloma patient community  One thing has become very clear to me, the pace of change and progress for myeloma has become exponential.   This is a very good thing!  We have had 4 drugs approved for myeloma since 2015 (two are new classes of drugs). 

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In this period, myeloma approvals have been 13 times greater than the average cancer. I can only say thank you to the researchers, drug companies, myeloma specialists, clinical trial patients, and advocates for such an outstanding achievement.  Nothing less than an ALL STAR performance.  In addition, the pipeline is packed with new drugs, CAR T, checkpoint inhibitors, MIL's and initiatives to treat as early as practical.  As a patient advocate I find it nearly impossible to keep up with the avalanche of new data. I can not see how anyone but a skilled myeloma specialist can keep up to date with this rapid pace of change.   But Dr. Lonial, a world class myeloma specialist from Emory University, says it best: CLICK HERE to view his advice.

In the last two years, the average life expectancy has gone from 4 years to 5.5. years, according to The SEER(Surveillance, Epidemiology, and End Results) data for multiple myeloma published in April of 2017 by the National Cancer Institute.  This is outstanding progress in that life expectancy had been stagnant at 4 years for 5 consecutive years.   Some patients beat the odds and live 10 to 20 years or more. When I was first diagnosed, the data for a person with dialysis-dependent kidney failure was just 3 months, and the average for myeloma patients overall was about 3 years. Now, I am beyond thankful to be an 11 & 1/2 year survivor.   I believe there are three critical components to beating the odds: Part one is early diagnosis and treatment before end organ damage.  Part two is disease dependent, or the hand that you were dealt.  Part three is related to the level of care that is available to you.  For more information on survival rates and life expectancy CLICK HERE.


Part 1 - Early Diagnosis and Treatment

If you are lucky enough to have a general practitioner who picks up high protein in the blood and finds the disease early while it is smoldering, or stage one, you have won the Myeloma Lottery.  Life expectancy of stage one disease is 3 times greater than if you have been found in stage three.  Treatment guidelines were published in November of 2014 with the express purpose of finding and treating the disease before it has progressed and  causes end organ failure.  A National Institute of health article states the intent of this clearly; "The concept of initiating therapy after end organ damage is analogous to initiating treatment after the development of metastatic cancer in solid tumors. Indeed, screening, early detection and intervention have played a large part in the major curative advances that have been achieved in solid tumors whereas metastatic cancer remains incurable in these same malignancies. It is, therefore, not surprising that MM remains incurable, in spite of all the advances in therapeutic interventions. Could it be because we are waiting too long – until metastatic myeloma occurs – to treat our patients? In such a condition, watchful waiting may actually be more harmful to the patient than early intervention. To read the whole article CLICK HERE! If you are one of the lucky ones who are found in the early stages of active myeloma or smoldering myeloma, you will have the luxury of time to understand the treatment options, find a myeloma specialist (a must), and plan to confront your disease before permanent end organ damage.  Dr. Rajkumar of Mayo Clinic did a wonderful job of explaining  the new criteria for myeloma diagnosis, and you can read it if you CLICK HERE.  Dr. Irene Ghobrial is doing some great work to follow MGUS and smoldering stages of the disease, to  develop treatments to cure, or at least prevent end organ damage.  CLICK HERE to view a myeloma crowd interview with Dr. Ghobrial on the subject.  Just as a note, the country of Iceland is testing all of its adult population over 40 to screen for MGUS, Smoldering, and active myeloma.  They call it iStopMM, a clinical trial supported by the IMF(International Myeloma Foundation).  This is a future I pray we will all see where we could cost effectively find MM early and treat it before end organ damage.  CLICK HERE or HERE to learn more about iStopMM.

Unfortunately,  Myeloma UK has reported that 1 in 5 myeloma patients die within the first two months of diagnosis, and that it takes nearly a year from the first symptoms to diagnosis for 25% of newly diagnosed patients.  Dr. Morgan of UAMS said it best when he outlined his thoughts on the subject of awareness and delayed diagnosis. He believes the fact that it takes 3 to 6 months and more often 6 months from first symptoms to diagnosis is a bit of a scandal.   To make real inroads in the myeloma we need to get it diagnosed early before we have organ involvement.  We need to make family doctors and family practitioners more aware of the disease.  They should do M spike and light chain tests on patients.  This makes a lot of sense to Dr. Morgan.  It is really tragic when patients develop renal failure when awareness of myeloma by a General Practitioner might have allowed the patient to get a consult or treatment from a myeloma specialist.  A myeloma specialist is critical to a patient's long term care and survival.  It is a disease that does not come on overnight but is years in the making.  Patient organizations can make a difference.   Like with Smoldering, there might be a non toxic and safe treatment for MGUS which would be a chemo prevention program.  He believe the future of Myeloma will be to get earlier diagnosis, safe treatments, chemo prevention strategy, regular screening for para protein, and early intervention.  This is the future we are striving to achieve.   

I have kidney damage, a good friend of mine has debilitating bone pain, others collapsed vertebrae, one suffers from a myeloma caused stroke, and many have died from delayed diagnosis.   All of which might have been prevented with a simple test of light chains and M spike costing under $150 without insurance, and no cost if covered by insurance and referred by a General Practitioner.  It is what could be!


Part 2 - Disease Dependent

Some people are just plain lucky and are given a form of myeloma that is not that aggressive.  In other words they have myeloma, but it happens to be smoldering myeloma.   This form of the disease can be present in the patient but not show any outward symptoms.  It can remain in this mode for 5, 10, or even 20 years.

The age of the patient is very important, in that you are 2 times more likely to survive if you were diagnosed at 49 years of age or less.  The average age of  the typical myeloma patient is 70.  You can read more on this subject if you CLICK HERE

Some people may have an active disease but do not have any of the negative prognostic indicators.  These indicators include, but are not limited to, deletion of chromosome 17p and  translocation of  4;14 or 14;16 or 14;20.  Your myeloma specialist will run the FISH test or other genetic tests like GEP(gene expression profiling) to determine if you have any of these negative prognostic indicators.  If you are considered high risk(15% of patients) , the life expectancy is less than half of the current average, or just 2 years.  You can read more about high risk multiple myeloma if you CLICK HERE

The sensitivity of the disease to treatment is also important.  My myeloma seemed to be very sensitive to the combination of Cytoxan, Thalamid and Dexamethasone, a treatment that put me into remission very quickly.  Some people might have the same experience with Revlimid, Velcade, or Dex, or any combination of these drugs.  If the disease comes back, as it often does, the re-application of the same regimen may continue to work for years.  I know one patient who has taken Thalomid for years as his only treatment and remains in remission. 

And of course if the average is 5.5 years, half of the people will invariably beat the average. 


Part 3  -  Quality of Care



There are some elements that you may or may not have much control over, the first of which is the availability of insurance.  If you do not have insurance or have no access to care, the average life expectancy is less than one year.  However, Medicare has a Compassionate Allowance Program where you can be approved in less than two weeks if you go to your local office and can show that you will not live without care.    To see the program CLICK HERE.  The Affordable Care Act may provide an option for the 15% who are not insured, and Medicare, Medicaid, and drug company assistance programs are also available. In addition, there are  other programs which can provide assistance  listed on the bottom of the home page, to view CLICK HERE.




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Multiple Myeloma is a rare blood cancer, so many hematologist/oncologists may not see one patient in a year.  As a result not all oncologists or hematologists are the same. However, some are very skilled and experienced with Multiple Myeloma and have treated many myeloma patients. The data shows these myeloma specialists provide an average life expectancy of 10+ years or more, compared to the average which is at 5.5 years.

 For a listing of these exceptional specialists CLICK HERE or for a more extensive list without survival history just CLICK HERE. I chose to get my SCT(stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy.  At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications.   I have found from my work on this site that centers like Mayo, Dr. Hari(Medical College of Wisconsin),   UAMS, or Dr. Berenson's (IMBCR) have very different approaches to treatment, but because they are expert in what they do, they have similar results.   You would choose a brain surgeon over any other surgeon if you had a brain tumor, why would you not do the same for myeloma? Find out how to find a myeloma specialist by CLICKING HERE or CLICKING HERE

Myeloma specialists have access to drugs that other oncologists do not.  Because they are the thought leaders, they are involved in clinical trials, and can obtain some drugs through other programs that lesser known oncologists do not have access to. Worse yet, oncologists who are not myeloma specialists may not even know that some of these drugs even exist.  For example, some of the well connected specialists have access to drugs or treatments like CAR T, MILs, Venetoclax or
Selinexor  which are not approved  treatments. But these experts can get approval for initial therapy through clinical trials or other programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Daratumumab,  Ixazomib, Krypolis and Pomalyst), and obtain approval to use them for newly diagnosed patients.   They also have access to the best clinical trials like KRDD(Krypolis, Revlimid, Darzalex, & dexamethasone)   for first line therapy which provides a response in 100 percent of patients.    When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. Because you need a significant infrastructure to conduct clinical trials at your facility and they cost the facility $15,000 per patient, few local oncologists have access to clinical trials.  Sometimes it is who you know! 

Myeloma patients seldom die from myeloma, they die from the complications from myeloma.    The number one complication is pneumonia, and others include infections, kidney failure, anemia, etc.  This, therefore, brings me to the realization that supportive care for the treatment of the many complications of this disease may just be as important as the cancer treatment itself.  Or a great Defense(supportive care) is as important as the Offense(cancer therapy).   MD Anderson and Mayo Clinic emphasize supportive care in their programs, UAMS actually has a Director of Supportive Care in their myeloma program, and Dr. Elias Anaissie, the Director of the Myeloma Program at the University of Cincinnati Cancer Center, has an extensive background in supportive care.  Dr. Anaissie has published a well written example of an exceptional supportive care model. You can read this publication if you CLICK HERE. To read my blog post on supportive care CLICK HERE.

I also think the quality of care that you receive can be affected by the knowledge of the patient, and this can be obtained by doing your research on finding the best approaches to care by looking at the work of the best myeloma specialists on-line, and by going to great sites as listed in the Resource Section of www.myelomasurvival.com. To find out how to get educated about multiple myeloma  CLICK HERE.  In addition,  joining a support group of the International Myeloma Foundation or the LLS (Leukemia, Lymphoma, and Myeloma Society) will provide more great information to improve your life expectancy.  I have found that the average life expectancy of most of these support groups far out-performs the average. Knowledge is power!  Additional information on the benefits of support group membership can be found if you CLICK HERE

With 30,000 new cases of multiple myeloma in the USA, we can estimate the total number of patients in just the USA at 165,000. If we can move the average life expectancy from 5.5 years to 11 years by having myeloma specialists guide your care, we could save 165,000 times 5.5, or 907,500 years of LIFE.  Many times more if we include the entire world.  You all can help by getting this message out to the myeloma patient community though Facebook and Twitter.  Everyone knows someone who has myeloma or  may have a friend or family member that can be helped by this information.  With your help we can "SAVE LIFE"!

Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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<![CDATA[Can We Dream? Can Myeloma Reduced Kidney Function Be Recovered?]]>Tue, 08 Aug 2017 23:30:04 GMThttp://myelomasurvival.com/myeloma-blog/can-we-dream-can-myeloma-reduced-kidney-function-be-recoveredDr. Ketan (Edward Scissorhands)  Badani
First an update on my kidney tumor removal.  Dr. Katan (Edward Scissorhands) Badani of Mt. Sinai is one of 5 or so doctors in the US who has completed 3000 kidney resection surgeries using the Da Vinci Robotic Surgery.  If practice makes perfect, Dr. Badani should be able to do a kidney resection in his sleep.  That is why I went from Wisconsin to New York for this procedure.  I have chosen, if possible, to never leave a complex disease or procedure in the hands of anyone other than an expert in his field.  So the result,  the tumor was removed with good margins, and initial indications are I have not lost much, if any, kidney function. My daughter Andrea said the doctor indicated the tumor in her words, not his, was "really gnarly". I will find out after 1 week whether the tumor was malignant, but even if with good margins, Dr. Badani says any cancer is gone.   If you have kidney insufficiency(mine caused by myeloma) this type of tumor is far more likely to develop than if you have normal kidney function. Secondary myeloma cancer, cancer aggravated by myeloma kidney insufficiency, or just chance, who knows? 

One  of my major concerns was my kidney function is marginal at best, and surgery could make it even worse, to the point that I would need to resume dialysis. My original diagnosis was multiple myeloma with "end stage renal disease, with a life expectancy of just three months. I spent two years on dialysis, until my kidney function miraculously recovered to the point where I could discontinue it. Typically kidney resection will result in a 20% reduction in function in the affected kidney and 10% reduction overall. This is caused both by the removal of some good kidney tissue so the surgeon can get clean margins and what is known as ischemia time where blood flow is cut off to prevent bleed out during the tumor removal and repair. Doctors try to keep this time down to 10 to 20 minutes, but in 10% to 15% of cases the time is too long and the kidney tissue dies, forcing the removal of the entire organ. Dr. Badani has developed a procedure to cut down on ischemia time, named FAST, which he teaches to other doctors around the world.  Using this process he kept my ischemia time at just under 9 minutes. 

The second most exciting development during my visit was Dr. Badani asked me if I wanted to be part of a clinical trial.  Dr. Badani is on a mission to find a way to regenerate kidney function in patients undergoing resection so they lose no function overall.  How is this possible?  In the clinical trial, Dr. Badani is using a material called AmnioFix, which has been to show to have regenerative characteristics in preliminary animal studies and in other areas of surgery and orthopedics. If it proves successful, this development could eventually lead to help for myeloma patients with kidney insufficiency--whether they need kidney resection or not.  The need is critical since we usually can't be approved for kidney transplants or are pushed low down on the priority list. The clinical trial has 45 pages and I did a little cut and past to provide a peak into it (It isn't posted yet on clinicaltrial.gov:

Onset chronic kidney disease (CKD) is a significant risk associated with radical nephrectomy as a treatment for renal cell carcinoma.[1 2] PN is a safe alternative for the treatment of renal cell carcinoma (RCC) that mitigates this risk.[3] While PN reduces the risk of CKD, PN does result in a reduction in renal function. In a literature review of the etiology and prevention of renal function decline following PN, Mir and colleagues found that within the first few weeks to several months following PN, estimated glomerular filtration rates on average in the operated kidney are reduced by 20% and in patients with two kidneys, global kidney function is reduced by 10%.[4] After this period of renal function decline following PN (~first 3 months), renal function is maintained constantly.[5]
A primary determinant in the loss of renal function following PN is a loss of renal parenchymal volume associated with the procedure. Specifically, loss of renal parenchymal volume during PN results from excision of the tumor and surrounding tissue to avoid positive surgical margins in addition to renal tissue necrosis resulting from damage associated with reconstruction of the kidney. Results from seven series demonstrate that the median percentage of parenchymal volume lost from PN is 17% (Range: 10-21.4%).[6-13] These studies furthermore demonstrate that the loss of renal parenchymal volume is the strongest and most significant predictor of reduced renal function following PN. [6,9,10] In a study by Lane and colleagues, it was found that when controlled for surgical factors (e.g., ischemia time, blood loss), tumor factors (e.g., size, interpolar location) and patient factors (e.g., age, gender, preoperative GFR) every 10% of renal parenchyma spared increased GFR by 0.89 ml per minute per 1.73m2.[7] In a similar study controlled for age, BMI tumor location, tumor size, operative method (laparoscopic, open), protuberancy and warm ischemia time, Song et al. found that for every 1% reduction in renal parenchymal volume, postoperative GFR decreased by .95 ml per minute per 1.73m2.11 Thompson et al. also found that for every 5% increase in renal parenchyma volume preserved, risk of de novo stage IV CKD decreased by 17% when controlled for preoperative GFR and warm ischemia time.[12]
In summary, AmnioFix®’s anti-inflammatory, anti-scarring, regenerating and healing properties have been evidenced in its ability to facilitate recovery of the neurovascular bundle following radical prostatectomy. We hope to further expand on these findings by extending the use of AmnioFix® to the regeneration of renal parenchymal volume with the goal of recovering lost renal function resulting from PN. A randomized trial is necessary to understand whether AmnioFix® can be used to treat renal insufficiencies and a damaged renal parenchyma.


To think we could regenerate kidney function may be as outlandish as to consider myeloma to one day be curable.  I am just thankful there are doctors like Dr. Badani who dare to challenge the impossible, and make it possible. 

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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<![CDATA[OH CRAP!  Part NUMBER 2 - Can I Have Dueling Cancers?]]>Sat, 20 May 2017 12:45:22 GMThttp://myelomasurvival.com/myeloma-blog/oh-crap-part-2-can-i-have-dueling-cancersPicture
Part two of my kidney saga. To view part one CLICK HERE.

​I had my visit with Dr. Thiel of Mayo Jacksonville the head of the Urology Department, and in his words "The Kidney Tumor Must Come Out!"  OH CRAP!  The malignancy risk of Bosniak III cystic lesions is thought to be approximately 50%, however the reported malignancy rates range from 31% to 100%. The good news is that he feels the location of the tumor will allow its removal without much if any effect on my overall kidney function. More good news the National Cancer Institute lists the average life expectancy of kidney cancer at 14 to 15 years, well above the 5.5 years for myeloma.    

Dr. Thiel  said in the old days kidney cancer was seldom if ever found before it had spread to other parts of the body, but with new imaging like CT and MRI, it is often found earlier with a much better prognosis.  They usually find it early by happenstance, without any observable symptoms. How kidney cancer was discovered in the past is because of pain in the  back or side, and/or blood in the urine.  I did not have any of these symptoms, but now have noticed a low grade feeling in my lower left side.  This may just be my mind playing tricks on me, and all myeloma patients can relate to these feelings during their myeloma journey.   

So at this point the plan is to have Robotic Surgery(partial resection of my left kidney) on June 2nd  with a machine called the Da Vinci Robot. To me it looks more like a spider or octopus. Apparently this method provides for a quicker recovery and from what I understand Dr. Thiel is the best there is in the Southeastern USA.  If practice makes perfect Dr. David(Scissorhands) Thiel has performed thousands of surgeries and over 300 with the Da Vinci Robot.  In addition, I asked him about outcomes, and with a hint of humor asked if his patients dropped like flies after Robotic surgery? He said he has not lost anyone. Not a bad batting average!   

I asked if I would have radiation or chemo after the surgery.  It was a surprise to me but he indicated radiation will kill the kidney and there are no drugs which have shown efficacy in the treatment of kidney cancer.  The standard of care is to remove the kidney, a far simpler procedure than a resection, and with most people the remaining kidney will do the work required all by itself. However with people like me who have kidney insufficient from my myeloma, I would be back on dialysis, and that would not be fun. 

Cancer can be so inconvenient!  We had planned on being in Wisconsin for the summer starting in May, however this has temporarily derailed those plans.  We could have had this done at Mayo Rochester, but the Mayo system seems to operate like three separate hospitals.  I have had all the testing at Mayo and it is on their system, but because I am not a Mayo Rochester patient I can not get an opinion if I can go to Rochester for treatment without a visit first.  Dr. Thiel had said I should use his name when I called his counterpart in Rochester and I assumed it would make this a seamless transition.  It hasn't yet.  I guess I was surprised because of the close interactions of the tightly knit  myeloma specialist community at Mayo, or maybe that is just my misconception.  

​Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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<![CDATA[OH CRAP!  Can It Be A Secondary Cancer?]]>Wed, 10 May 2017 16:01:23 GMThttp://myelomasurvival.com/myeloma-blog/oh-crap-can-it-be-a-secondary-cancerPicture
I have been a little slow about talking about my recent visit to see Dr. Barlogie for a few reasons. I knew when I left I was SCR(Stringent complete response), no M spike, good light chain numbers, and a clean MRI of my bone marrow.    However, it has taken a lot longer than normal to find out about my MRD(Minimal Residual Disease) status, and if MRD positive what was my Gene Expression Profile (GEP).  I have been waiting and they say the delay in the GEP is because they can not find enough myeloma cells to run the test.   Now that is just outstanding.  The OH CRAP part comes in because when I got home and looked at my MRI output which had just been released, it had stated the following:

IIMPRESSION(3/17 MRI)
1. Complex left lower renal pole 1.9 cm cystic lesion. Further 
evaluation with dedicated MRI abdomen with and without IV contrast 
recommended.
2. Osseous structures are described in a separate report

I asked Dr. Barlogie if this was a problem, then wouldn't it have shown up as active in the prior year's PET scan.  He looked into it and found that it was in his words HOT in the 3/16 PET scan.  As with the MRI, the PET scan was not finalized by the time I left Mt. Sinai but was finalized after I had returned home.  I nor Dr. Barlogie made note of the following impression.

IMPRESSION(3/16 PET)
1. No hypermetabolic lytic lesion is identified to suggest active
multiple myeloma.
 
2. Mildly hypermetabolic ovoid lesion at the left lower pole should be
evaluated with dedicated multiphasic MR imaging with contrast.

After a few emails with Dr. Barlogie he  recommended I get an ultrasound and later a MRI to determine if this is renal carcinoma.  The results of these studies resulted in the following diagnosis.


I have a Bosniak III cyst (2.0 cm) in the inferior pole of the left kidney, and have an appointment with a Mayo surgeon, Dr. Klein at Mayo Jax on 5/17.  So OH CRAP, I may have dueling cancers!  You are your own best advocate and need to make sure you get copies of all your reports and read the summary.  If I hadn't, I may have been  waiting another year before this kidney issue was identified.   Hopefully we have found it in the early stages and it can be removed without removing one of my kidneys, which are already marginal from the original myeloma.  One thing for sure is I do not want to go back on dialysis. 

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


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<![CDATA[Myeloma Life Expectancy Has Increased From 5 Years To 5 Years and 6 Months]]>Wed, 03 May 2017 21:25:50 GMThttp://myelomasurvival.com/myeloma-blog/myeloma-life-expectancy-has-increased-from-5-years-to-5-years-and-6-monthsPicture
Each year in mid April, the National Cancer Institute updates the SEER data which shows if any progress has been made in survival for all cancers.  In the 11 years since I was diagnosed, the life expectancy has increased from 3 years to now this year myeloma survival is 5 years and 6 months.  You can see the SEER results if you CLICK HERE!  The 5 year survival from the graph is 52.7% or 2.7% above the average.   History shows that 5.3% of patients die between year 5 and year 6, which if we extrapolate 2.7% is a little over half of the yearly total or translates into an estimated survival of 5 years and 6 months for myeloma.  This is a 10% improvement  over the prior year results.   

This information, does not include the improvements we will see with the newer drugs which have been approved like Daratumumab, Elotuzumab, and Ninlaro. 

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: 
https://twitter.com/grpetersen1

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<![CDATA[Katherine Keys, An Orphan Disease (#Mesothelioma) Success Story! The Keys To Her Survival]]>Sun, 23 Apr 2017 16:37:42 GMThttp://myelomasurvival.com/myeloma-blog/katherine-keys-an-orphan-disease-mesothelioma-success-story-the-keys-to-her-survivalA Ten-Year Mesothelioma Survivor Shares Her Story
 
diagnosis of mesothelioma is terrible news, but when Katherine got her diagnosis, she was not prepared to let it defeat her. At the age of 49, thinking she only had the flu, Katherine Keys found out she had a devastating type of cancer and was given a hopeful prognosis of two years to live. Ten years later, she is glad she never gave in to despair and that she fought to survive this disease.
 
Mesothelioma: An Insidious Cancer

Katherine was diagnosed with pleural mesothelioma, a type of cancer that affects the pleura, the tissue that lines the lungs and chest cavity. It is often mistaken for lung cancer, but is distinct and is most often associated with having been exposed to asbestos. Mesothelioma is aggressive and spreads quickly. It is considered incurable, and most people diagnosed receive a life expectancy estimation measured in months, not years.
 
For Katherine, her story began with symptoms that seemed just like more ordinary respiratory illnesses. She had some shortness of breath, a bad cough, and difficulty breathing. As the symptoms got worse, she ended up in the emergency room where she finally got an accurate diagnosis of cancer. Mesothelioma is so insidious because it mimics other illnesses. Because this kind of cancer is rare, many people will be misdiagnosed several times before getting the right diagnosis, all while the cancer grows and spreads.
 
Stage I Mesothelioma and Aggressive Treatment

Katherine was luckier than most mesothelioma patients. Ending up in the ER may just have saved her life. Because mesothelioma looks a lot like other diseases, most diagnoses are late, in the third or fourth stage. Katherine got her diagnosis during stage I, which meant she had a fighting chance. The cancer had not yet spread very far and aggressive treatments just might eliminate her tumors entirely.
 
Even at stage I, the prognosis was not good and her doctors did not expect her to survive more than two years. Katherine decided to be positive and to choose the riskiest and most painful treatment path: radical surgery followed by radiation therapy.
 
Katherine was referred to experts at the M.D. Anderson Cancer Center where she underwent a surgical procedure called an extrapleural pneumonectomy, which involved removing her pleura, some lymph nodes, part of her diaphragm, and an entire lung. Recovery from this surgery was long and slow and she also had to undergo radiation to kill any remaining cancer cells. The surgery itself could have killed her, but it gave Katherine her only real chance of surviving mesothelioma.
 
Recovery and Remission
As Katherine recovered from surgery and went through radiation, her doctors screened her for cancer every month. If it was coming back, they needed to know so they could administer more treatments. Month after month, they could find no signs of cancer in her body. After six months, there were still no detectable cancer cells. After a year, with no signs of cancer, Katherine’s doctors declared her to be in remission, something so few people with mesothelioma achieve.
 
As you could expect, all of these treatments come with a cost. Katherine decided to look for financial help on the internet to help her pay for her overbearing medical costs. The she came across MesotheliomaLawyerCenter.org where she learned about trusts that the government has set up for people suffering from asbestos related cancers. These same trusts helped her afford her medical bills. Without them she would have been lost. It has relieved much of the burden on both herself and family members, as you would expect.
 

Katherine now lives life limited because of her surgery, but happy to be alive and thrilled to have more time with her family and friends. She can’t do everything she once could, but she was also told she would not live more than a couple of years. She is now ten years past her diagnosis and is loving life more than ever. She is also enjoying sharing her story, inspiring others to fight cancer and to hold on to hope.

 
So what can we learn from Katherine's story, and what were the keys to her success.  Why did she beat the average one year survival of just 40%, or 9 to 10 months.  

Her first and probably most important step was she knew when something was wrong and refused to stop in the pursuit of what was wrong until she found the cause.  As a result she found it in an early stage, and with cancer the earlier it is found the longer the like expectancy.  

She became her own best advocate and researched and found the best cource of treatment which although intense gave her the best possibility of an improved life expectancy.

She went to one of the best cancer centers in the world for mesothelioma cancer treatment,  MD Anderson.

She was able to go to a top notch hospital because she sought out places for financial help to minimize compromises on treatment due to financial hardship. 

If you look at much of what I have written on this site it follows the same basic keys to success.  I would argue, these keys will hold true for most orphan cancers, and most all cancers which have metastasized. 


Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1]]>
<![CDATA[PAN Is Still Out Of CoPay Funds, But The IMF And PAN Indicate Other Organizations like LLS have Available Funds -  Why The Problem?]]>Wed, 19 Apr 2017 16:28:16 GMThttp://myelomasurvival.com/myeloma-blog/pan-is-still-out-of-copay-funds-but-the-imf-and-pan-indicate-other-organizations-like-lls-have-available-funds-why-the-problemFirst the GOOD NEWS, then like Paul Harvey used to say ," THE REST OF THE STORY!"

PAN posts on their site the following:

Program Status - Fully Allocated

We are no longer accepting or processing applications for new or renewal patients.
The PAN Foundation’s Multiple Myeloma fund is currently fully allocated. As of April 19, 2017, Leukemia and Lymphoma SocietyHealthwell and Patient Advocate Foundation are accepting applications.

The IMF posted the following update:


  • APRIL 10, 2017 - CO-PAY ASSISTANCE PROGRAMS UPDATE (4/10/17)  

The following co-pay assistance foundations are now open to myeloma patients who receive drug coverage through Medicare and who meet eligibility requirements:

As of 4/10/17
Healthwell Foundation
tel:  800-675-8416
website:  healthwellfoundation.org
LLS Co-Pay Assistance Program
tel:  877-557-2672
website:  lls.org
Patient Advocate Foundation
tel:  800-532-5274 
website:  http://www.patientadvocate.org

up to $10,000



The rest of the story is PAN, the largest of the copay programs, so if they are out of funds it hurts a lot of people, and the vast majority of the funding comes from drug companies.  The economics for the drug companies is if they do not provide the copay of typically 20% of the drug costs, the patient will not buy the drugs and they will lose the 80% they get from Medicare or private insurance.  So apparently somebody at drug companies have to hone up on their basic math skills.  I have said before if they do not provide copay assistance,  patients can't pay the copay and big pharma looses the 80% and unfortunately we may lose our LIVES. Please get a new calculator because if no copay no 80%, and you just may lose your customer base.   A great article about how the current system has developed into what we have today titled "How Big Pharma Uses Charity Programs to Cover for Drug Price Hikes - A billion-dollar system in which charitable giving is profitable" CLICK HERE. So now you know the REST OF THE STORY, but it comes with a big BUT.  But unless co pays go away, we must have the help from the Jerry Rigged system we have now.  

So in Summary:

Cancer Bad, Drugs Good, High Drug Costs Bad, Unaffordable Insurance Co-pays Bad, Co-pay assistance Good, Drug company funding for co-pay Good, Under funding copay by drug companies Bad and maybe Stupid!
 

Good luck and may God Bless your myeloma Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1]]>
<![CDATA[Can You Hear It Now? The Jerry-rigged #Myeloma Safety Net Is Getting Shredded!]]>Sat, 01 Apr 2017 15:18:14 GMThttp://myelomasurvival.com/myeloma-blog/can-you-hear-it-now-the-jerry-rigged-myeloma-safety-net-is-getting-shredded Picture
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I recently received an email from the IMF with news I felt to be quite startling.  Here we are at the end of March, just 1/4 of the way through 2017 and the Co-Pay Assistance Funds had dried up. The letter from Susie Novis, the CEO of the International Myeloma Foundation, is attached.  First let me explain how I believe the Myeloma Safety Net used to work.  

The Inner Workings of the existing system

Drugs for cancer treatment can cost $150,000 to $500,000 per year

Insurance Companies do not want to pay for the total cost of the drugs so they ask for co-pays of 15 to 50% and more

Most Cancer Patients are over 65 years of age and on Medicare and, according to a 2014 Forbes article, married couples over age 65 have a median yearly income of $44,718. Forbes reports that individuals 65 and older have a median annual income of $25,757. The calculation includes all sources of income, including government assistance, disability, Social Security, pensions, IRAs or 401(k) plans.

A 20 % co-pay could be $30,000 to $100,000/year

Drug companies know 99% of patients will not be able to buy the drugs or take them without help so they have historically provided the copay funds so they can sell their drugs.  And my opinion is that I believe that drug companies set prices to account for the 20% they will give to the patient.  Not all funds come from the drug companies but a large amount does. 

What has gone wrong? Outflows first.

Let's just follow the money and think of what could be causing the increased outflow?

​Patients may be living longer and that would be a great thing.  Longer lives, more drugs to extend lives

More drugs are available from more companies, so the cost could be more for the new drugs?

Maintenance has become part of the standard of care, so more cost for a longer time?

Now 3 and 4 drug combos being used instead of 1 and 2,  which will drive up the cost?

Insurance co pays and deductible have gone up, but they have not exploded in one year?


Now let's look at Inflows.

Takeda and Celegene have always done their part and have been excellent partners, but have they increased their participation in step with the rising outflows? 

Light the Night, MMRF, and other fundraising efforts are just not enough to make a dent in the shortfall

We know based on the current federal budget moves that no added funding is going to come from them.  They just slashed the NIH funding!

There are now a lot of new players coming into the myeloma space, J & J, Novartis, Sanofi, Bristol Myers Squibb, Abbvie, and have they stepped up to the plate like our tried and true long term partners have.  I know we will be spending billions on their drugs, will they be smart enough to know we can not do it without their financial help.   The current system is a Pay to Play system.  

I am asking the questions because I see the future without a change in the inflow of funding and the future is bleak. This Is truly Scary because without drugs WE DIE.  So the drug companies can step up to the plate or watch the system go nuclear as  myeloma and all cancer patients start to drop like flies.  The government will take action when they see their constituents are at the gates.
 CAN YOU HEAR US NOW?


Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1















Dear Gary,

Thank you for registering for "FREE Webinar to Address Concerns Regarding the Recent Lack of Funds for Co-Pay Assistance".
Dear Friends, 

Over the past few weeks, the International Myeloma Foundation’s InfoLine has been flooded with calls from patients and caregivers facing insurmountable financial challenges due to the high cost of drugs and increases in insurance copays. In the past, several services have been available to provide financial assistance to patients; but the current atmosphere has severely limited the availability of those funds. 

In fact, currently there are NO funds available for co-pay assistance, and the expected funding that will soon be available will likely dry up very quickly. 

On Thursday, March 30, 2017 at 4pm Pacific / 7pm Eastern, the IMF will host a FREE teleconference open to cancer patients and caregivers to address these issues. We do not have solutions yet, but, we do know that the first step in addressing a problem of this magnitude is to make sure that companies are aware of the impact it has on patients and their families. This forum is for you to share your stories, and your voices will be heard. 

To register for this teleconference, please fill in the forms below. We urge you to participate and please share this information with others who might benefit from the opportunity to understand the source of the issue, and listen to stories from families across the country who face similar challenges. 

This call will be recorded. It is our hope that we will be able to share excerpts of your stories with people in positions to make things better for cancer patients everywhere. 

Warmest regards, as always we’re here for you! 

Susie Novis Durie 
President and CEO 
International Myeloma Foundation 
Please send your questions, comments and feedback to: theimf@myeloma.org


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<![CDATA[I Am Off To See The Wizard the Wonderful Wizard Of ONC!]]>Mon, 13 Mar 2017 21:43:28 GMThttp://myelomasurvival.com/myeloma-blog/l-of-onc
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Dr. Bart Barlogie - The Wizard Of ONC
I am now an 11 year survivor,  and like many patients, I have a local oncologist at Mayo Clinic and go to see my primary Myeloma Specialist (Dr. Bart Barlogie) at Mt Sinai in New York city.  It is something I would recommend to all patients who do not have a myeloma specialist close to them.  I live in Florida and travel to New York, and my insurance has been accepted in both Mayo and Mt. Sinai.  A friend, Danny Parker, also lives in Florida and will visit his specialist in San Francisco, California.

Mayo Clinic did a retrospective study showing that experienced myeloma specialists will significantly improve life expectancy, and NPR recently conducted a study and found that cancer patients were 20 to 50% less likely to die if treated at a comprehensive cancer center rather than at a local oncologist.  This same study also showed that 85% of patients who could choose to travel to a comprehensive center chose NOT TO! If you have read this and choose not to get a treatment plan from a myeloma specialist without a great reason, then, like Forest Gump said,  "Stupid Is As Stupid Does!"  

Over the years my time between visits to Dr. Barlogie went from 3 months to 6 months and now every year. I go every few months to Mayo locally for blood work.  With Dr. Barlogie I get a bone marrow biopsy, MRI, PET scan, bone density, blood, urine and MRD tests.  But if you are anything like me, I look to these visits with dread.  Cancer has an ugly way of creating angst, worry, and concern around these major events.  My wife has noticed that I go though a metamorphosis.  My once happy go lucky attitude disappears, and a lot of crap goes through  my head.  Is the pain in my legs really new bone disease?  Is my fatigue a result of myeloma induced anemia?  I do like Dr. Barlogie, but I always dread this time of year.   I think every cancer patient has varying degrees of anxiety, and I choose to try to manage mine with Zoloft.   Everyone handles this in different ways, and some may not be affected at all.  To those few, I envy you!


Good luck and may God Bless your myeloma Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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