A Story From John Tyler
Earlier than a couple of years ago, when somebody was diagnosed with having multiple myeloma, a bone marrow cancer, they were essentially given a death judgement that would happen within two years at the outside.
I'm here to tell you that it can be beat!
I have had first-hand familiarity watching my brother receiving that diagnosis in February of 2008..... I want to give some support to anyone who has been diagnosed with this deadly cancer of the plasma cells. Some of the symptoms connected with this cancer consist of:
- - Bone or back pain (most often in the ribs or back)
- - Fevers without any other cause -increased vulnerability to infection
- - Symptoms of anemia (such as tiredness, shortness of breath, and fatigue)
- - mysterious fractures
- - Weakness of the arms or legs
My brother fell off a ladder and landed on his back, so he noticed tremendous back pain. He thought he could shake it off, but after a few weeks, he was influenced to visit his primary care physician. He suggested that my brother see a specialist...Dr. Stephen Mayer - who practices oncology and internal medicine in Brockton, Massachusetts.
I wanted to give this doctor's name because he saved my brother's life...and shocked himself in the process.
A new medication - Revlimid, was recommended as the proper treatment in my brother's case. It was new, FDA approved in 2005.
Here is what Mayo Clinic is reporting as treatment (still) for multiple myeloma: "Chemotherapy and bone marrow transplant are the primary options." "Thalidomideis used along with dexamethasone to treat multiple myeloma in people who have been recently found to have this disease."
Dr. Mayer, however, recommended Revlimid...a seven-month treatment, and the cost of the pills for a month ran $6,800. Nobody can afford to pay $6,800 a month for medicine, but my brother was very fortunate because his insurance actually paid for most of it, and the maker of Revlimid helped out, too.
Now, I am not in the medical profession, but I can give this first-hand, eyewitness account of the ordeal.
My brother was harshly ill from this disease and medicine. One day, when I brought him to Dr. Mayer's office, he was so weak and sick that he knelt down in the bushes and threw up for what seemed forever. He could barely gather enough strength to get inside for the appointment, and this went on for a couple of months. At some point, I can't remember exactly when, my brother heard this from Dr. Mayer, "I don't generally say this, but you seem to be In remission."
That news seemed to be the mental boost that my brother needed to move him forward psychologically.
When they first met, the good doctor said, "You may get two months or two years, I have no way to know." That was three years ago...but, I have more good news. As time went on, my brother decided to work with the VA because he would not be able to afford a lot of the medications and treatments, and he is a Viet-Nam veteran.
The VA took him, and they wanted to prescribe the Thalidomide, but my brother told them how he was responding very well to the Revlimid.
The cost was a huge factor, but the VA finally said they would order the Revlimid, and let my brother finish the course with them.
As it turned out, my brother would decide to also get a bone marrow transplant in Nashville at the VA hospital there. It was tough, but he got through it just fine. When he first went for testing, his cancer cells were 50% of his bone marrow. Before the VA would do the transplant, they needed to see his counts at or below 20%, and when they finished the transplant, they hoped for a 5% cancer cell count - but my brother came away from the VA with zero cancer cells found in his bone marrow.
After his release from the hospital, my brother had to wear morphine patches called Fentanyl, and that treatment would manage the pain from the deterioration of the bones.
Over time, he went to the local VA for what they call Zometa...some sort of liquid treatment that somehow strengthens the damage done by the cancer to the bones. He began to slowly wean off the Fentanyl patches to where he doesn't use them anymore, and hasn't for about a year.
His appointments would be every couple of weeks, then months...and finally, he was told that he didn't have to return for major exams for a year.
My brother was issued a death judgement in 1990 when he contracted throat cancer - from smoking, of course. He was told that he might make it to April of 1990. This is twenty-one years later, and he's still here...smiling and living life, so I just wanted to encourage anyone with cancer that the first thing you need to do is fight.
My brother never quit. He would always tough it out, and had the attitude that he could beat this disease - this killer called cancer, and has done so twice now.
We cannot discount prayer. Lots of prayers went up to heaven from his family, and from his own lips, and God must have heard them all because He let him live through the 23.5 years of cancer.
NOW COMES THE CAUTION:
PLEASE LISTEN TO THIS....About three months ago, my brother, Verne, began to lose his appetite. He thought it was strange, but paid it no mind. He went to the VA for his checkup, and they ran a bone scan, but found nothing of concern.
Days and weeks went by, and Verne began to feel the old bone pain that he used to feel when the cancer was first diagnosed...but he wrote it off to doing too much lifting.
After two months had passed, Verne had no appetite and began to lose weight. On February 21, 2011, he went to the hospital and they ran a blood test on him. His CALCIUM levels were high. They should be 8...they were 14. This was the first and only sign that the myeloma was back.
On February 23rd, he was released from the VA, but - before he got home, they called him back because they thought he had contracted pneumonia - based on another test they had run. He did have pneumonia, so they admitted him
One week elapsed from the time Verne was admitted on February 23rd...a Wednesday...to the following Wednesday....at 3PM...he went to be with the Lord.
Now, here is the message that Verne would like to give to fellow myeloma patients: When you go in for your tests....ALWAYS HAVE THEM CHECK YOUR CALCIUM LEVELS.
He could have made it, had he gone in for the calcium check when he first had symptoms of fatigue, loss of appetite, bone pain (back and ribs), and they could have put him on VELCADE...the latest, more potent drug.
By the time Verne admitted to everyone that he was in a lot of pain...it was three months too late really to save him. His immune system was shot. His bone marrow contained over 80% cancerous plasma cells. They got his calcium count down to a comfortable 9.0, so his prognosis was good. His oncologist said he could begin the VELCADE treatments. The only problem was - his immune system was shot, so he picked up the pneumonia - which ended up causing his demise in one short week.
If it were me....I would have my blood checked monthly for calcium levels. One can go through another treatment of Revlimid or now Velcade...and make it, but don't be foolish. When pain strikes...and appetite loss hits, and weight declines...get in and have the calcium levels checked because myeloma WILL COME BACK....and with a vengeance if you ignore the symptoms and signs that only YOU, the patient, can know and feel.
There have been so many technical and medical breakthroughs is cancer research and medicines - especially the Revlimid and/or Velcade treatments that were not available even a few years ago, so keep the faith...talk to your physicians, and don't give up. Do not ever give up. Verne might have made it had he just paid attention to the signs and knew enough to ask for the calcium level checks.
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