Multiple Myeloma - Survival Rate Statistics by Hospital
  • Home
  • Higher Risk Myeloma
  • Myeloma Blog
  • Myeloma Specialists Listing
  • Doctor Submissions
  • Contact Us

#Myeloma Patients Health - It's A Question of Balance

5/21/2020

1 Comment

 
PictureThe COVID19 DREAM TEAM
Like everyone who is in the high risk populations for death from the CORONA virus, myeloma patients have heightened resistance to going to the hospital for fear of getting exposed to the virus.  Unfortunately, this is heightened by the findings, 40% of all infections are caused by asymptomatic carriers, and the average death rate for COVID19 positive Americans is 5.9% but over 30% for myeloma patients. 

I have tried to practice what I preach and follow the guidelines which #birx and #fauci have recommended. Until recently you could not get a virus test unless you were symptomatic and had a doctors order, and it was not covered by Medicare.  This has now been changed and is covered by Medicare, and I have since gotten both the virus test, and the antibody test(courtesy of myeloma crowd).   I do not have the virus or the antibodies to the virus, so I still remain vigilant.  It would be nice if I had the virus and recovered but with a death rate of 30%, the best approach is to stay virus free until a vaccine or cure is found and available to all.

I have been putting off surgery for a hip replacement for years, but it is now bone on bone and just too painful.  It was originally scheduled for April 22nd but was canceled by Mayo because of the pandemic.  Talking with my doctors they believe now is the time for treatment because we are over the curve and going down, but with the opening of the country we will likely see another wave this fall and winter.

I have had insurance issues trying to get pain medications. Tylenol is no help, and I can not take NSAID's because  I have myeloma caused kidney damage. I could take a topical NSAID cream which does work and is easy on the kidneys, but BCBS of Florida has turned it down 3 times.  Their response is I have to take oral NSAID's first, but I have told them oral NSAID's would damage my kidneys and put me back on dialysis.  So we all have this Question Of Balance.  We all have to weigh the risks vs. the benefits of our health care decisions. Is the risk of getting COVID19 significant enough to cancel the surgery? 

I chose to be pain free. I will be going to Mayo in Jacksonville, and the Mayo system has a number of safety measures and procedures in place.  So I come to the conclusion, I have minimized the risks, will use a N95 mask at all times, keep my distance if possible, and sanitize hands and things I touch frequently.  I asked a number of questions and found out the OR staff have all been tested for the virus, all patients are tested before surgery, all nursing staff are masked and surveyed for fever or symptoms, as are food service personnel, and there are two separated areas, COVID and non COVID, where staff never crosses over.

I think I am making the correct choice, but we all must answer our own "Question of Balance"!


Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


A Question Of Balance by the Moody Blues
WHY? Just because I like it!

1 Comment

Enough Bad News, Some Great News For #Myeloma Patients!  The Myeloma Miracle Continues!

5/7/2020

6 Comments

 
Picture
With the challenges of COVID19, it becomes hard to remember the wonderful improvements seen in myeloma over the years, and the critical part the leadership of myeloma scientists, specialists, advocates, drug companies provide and the remarkable work of the FDA and its Orphan Drug Designation, without which orphan drug progress would have languished, as it had for decades.
In September of last year I wrote the blog post(CLICK HERE) outlining how all myeloma drugs in the last 16 years had two FDA designations for each approved drug. One being an  Orphan Drug Designation,  and the other being Fast Track, Priority Review, Breakthrough, etc.  Remember there are more than 6000 orphan diseases and majority of these diseases have not one approved orphan drug.  Myeloma patients should feel blessed to know they have had 10 new drugs approved in the last 16 years.  In addition, Myeloma (an orphan disease) has  7 drugs which  all had two FDA designations, but have yet to be approved.  These drugs include the following:

Drug                             Company                 Designations      Description

AMG420                        Amgen                        OD&FT          (BCMA) Bispecific T-Cell Engager
                                                                                                (BiTE®) Antibody Construct
CLR131                         Cellectar                      OD&FT           Radiotherapeutic phospholipid drug

                                                                                                 conjugate (PDC™)
GSK2857916               GlaxoSmithKline           OD&BT          (BCMA) antibody-drug   
                                                                                                 conjugate (ADC)   
bb2121                          Celgene                       OD&BT          BCMA chimeric antigen receptor
                                                                                                 CAR T

Galinpepimut-S              Sellas                          OD&FT          Immunotherapy vaccine to elicit a
                                                                                                 strong response against WT1
P-BCMA-101                 Poseida                     OD,FT&BT      Autologous chimeric antigen receptor
                                                                                                 (CAR) T-cell therapy
Melflufen                        Oncopeptides              OD&AA         Drug activated by aminopeptidases,

                                                                                      overexpressed in myeloma
So how have we fared with this list?


AMG420 - has dropped from the list in favor of a kinder gentler similar drug called AMG701, however AMG701 has only one FDA designation.

All of the other drugs on the list are progressing very well, with GSK2857916 and bb2121 expected to be approved in the next several months. 

For the first time in 16 years,  two new drugs have been approved without dual FDA designations. However, one  is another  CD38 antibody similar to Daratumumab called Sarclisa® (isatuximab-irfc) by Sanofi for patients with relapsed refractory multiple myeloma.  Another approval is subcutaneous Daratumumab called Darzalex Faspro.


In addition we must add two more to  the list of candidates with two  or more FDA disignations. 

Drug                             Company                 Designations      Description

JNJ-4528                         Janssen                    OD&BT              CAR-T with two BCMS-targeting
                                                                                                     Single domain antibodies

CT053                             CARsgen               OD, RMAT*          A fully human anti-BCMA CAR--T                                                                                                         Therapy
* The RMAT designation is given to regenerative therapies intended to treat, modify, reverse, or cure a serious condition.  

Other drugs which already have an orphan drug designation and have the potential to obtain another FDA designation include: Amgen's AMG701(replaces AMG420), Molecular Partners MP0250, DARA BioSciences KRN5500, and SUTRO's STRO-001. 
Historically each approval of a new class of drugs (eg. Imids and Proteasome Inhibitors) have added a year or more to myeloma  life expectancy, so approval of these drugs could double the current myeloma life expectancy.  Now that is GREAT NEWS!

Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1                                                                                     

6 Comments

BE SAFE! #COVID19 & #Myeloma, All We Have To FEAR is the LACK Of FEAR Itself!

5/4/2020

3 Comments

 
Myeloma patients in general have a higher risk of infection, which is 7 times that of the average person.  It is because of this we take special care to be on top of any infection.  I have written about this in the past.  CLICK HERE for the link.  I always have Tamiflu and an antibiotic Z-Pack for whenever I get a fever.  I have had pneumonia three times and gone septic once.  This combo has saved me so very many times.  However, COVID19 has put a whole new level of FEAR into the equation.  Before the flu vaccine or antibiotics for secondary infections were developed, the Spanish Flu resulted in the death of an estimated 50 million people worldwide, and 675,000 deaths in the US.  With the development of the flu vaccine, antibiotics, and antivirals, the typical US flu season now has just 34,000 deaths in the 1918/19 flu season. The new level of fear for anyone over 65 is outlined in the following graph.
Picture
 
However, myeloma patients have many other complicating factors.  People with commodities like cancer, compromised immune systems, Diabetes, Kidney Insufficiency, Heart disease  etc., have an even higher likelihood of death at over 30% as seen in France and Spain.  A recent study of cancer patients with COVID19 in NYC has shown hematologic malignancies were associated with a higher rate of mortality of 37%.  During the shelter in place order, it is imperative to take extra care to be safe.  Shop by curbside pickup, wear a mask, social distance,  wash hands, hand sanitizer et. al.  These efforts to be extra careful by myeloma patients and the government limitations and their policing, I believe have been able to keep our infection rate lower.  Our fear of getting an infection with no known FDA approved treatment has been a motivator for a SAFETY FIRST mindset. So why should we Fear the Lack of Fear Itself?

It is because not everyone is on the same page and do not social distance, will not try to move aside on the sidewalk, do not wear a mask in grocery and drug stores, or are younger than 44 and feel bullet proof and feel no social responsibility to protect those at high risk.  I will set this up by posting a few headlines which highlighted a need for a new heightened vigilance by the myeloma patients. 

California Governor Newsom announced a "hard close" on all beaches and state parks in Orange County on Thursday, after news photos circulated showing people not following social distancing guidelines over the last weekend of April.

Governor Gretchen Whitmer of Michigan says heavily armed men and Confederate flags at state capitol ‘depicted some of the worst racism and awful parts of our history’

'Devastatingly worrisome': Dr. Deborah Birx decries scenes of protesters not practicing social distancing amid coronavirus


I see and experience this lack of compliance in everyday life even under restrictions, just think what it will be like when they open up the economy with relaxed restrictions.  My appeal to you is that YOU must look after yourself, because with COVID19 a good defense is the only defense.   Until a vaccine is developed or a cure is found, our best  way of surviving COVID19 is to make sure we do every thing we can to stay virus free. 

Continue to Shelter in Place or Self Quarantine to protect yourself!

If you do have to expose yourself to the public then please follow the recommendations outlined in the following Wall Street Journal article.

Safety Advice for Reopening: How to Reduce Your Risks as Coronavirus Lockdowns Ease.  As businesses reopen, we asked public-health experts for guidance on venturing out.  CLICK HERE to view.

Dr. Landgren of MSCC has outlined what one of the best cancer centers in the world does to PROTECT the patient and you can hear the broadcast if you CLICK HERE.  Some of the safeguards include all patients are tested for COVID19, and based on your results you go to a COVID area or COVID free area, all patients and care personnel wear masks, visits are limited, all oral protocols are considered, and many more recommendations.  In addition, Mayo Clinic has recommendations coauthored by Dr. Morie Gertz and you can view them if you CLICK HERE.  



Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
3 Comments

    Author

    Gary R. Petersen
    [email protected]
    CLICK HERE for my myeloma journey

    ©2012 All Rights Reserved

    Categories

    All

    Archives

    January 2025
    August 2023
    March 2023
    October 2022
    February 2021
    October 2020
    September 2020
    August 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    August 2018
    June 2018
    May 2018
    April 2018
    January 2018
    November 2017
    October 2017
    September 2017
    August 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012

    RSS Feed

Web Hosting by iPage