Continuing with Richard’s story,
So, here is the past year – October, 2011 to November, 2012 – of my life as measured against my MM experience:
Looking back for a year or two, with no knowledge of what was occurring inside; I had begun to feel a bit sluggish and tired, more than usual. I have always tried to stay in shape and work out as well as eat healthy. So, I simply chalked it up to getting a bit older.
July 2011- I planned and went in to have double knee replacement surgery. In hindsight, we think that this may have triggered or activated the MM cancer that just might have been smoldering in a dormant state for a few years.
October 15, 2011 – My left hand swelled as though it was a cartoon balloon-hand. I checked in with a rheumatologist thinking it might be arthritis flair up. After tests showing nothing other than a calcium spike in my blood, the only thing left was a bone tap. There it was – the M protein.
Here we go: The Cleveland Clinic is tremendous.
November 2011 – diagnosed with MM after the bone tap, I met with my first Oncologist. He was very negative and quite doom and gloom. Fortunately, in the weeks ahead, the hospital opened a new office and off he went. Staying put, my new oncologist was totally the opposite – positive, cooperative, and informative. Also, after we talked, he set me up with a meeting with the head of Stem Cell Transplant at the Cleveland Clinic. I was presented several possible courses-
of-action to follow from an aggressive program to clinical trials to a passive, patient approach. After discussing these at length with several doctors and my wife, we decided on the more aggressive course which would lead to Chemotherapy and Stem Cell transplant. My philosophy was simple: Beat it and move forward.
I had been having a very sharp pain in my lower vertebrae for about 10 years and recently it was beginning to worsen. After having it checked, we decided to have Kyphoplasty done. I went in at 7 AM, came home at 1:00, and was in the gym for practice at 6:00 – PAIN FREE!
Why did I wait?
December 2011 – MM treatment begins with a regimen of Revlimid, Dexamethasone, and Velcade (sub-Q) – three weeks on and one week off. Also, I had monthly – intravenous feedings of Zometa. We also checked for Amyloidosis just to be sure and that was negative.
This treatment was to continue for 6 – 4 week cycles and that would lead to a hospital stay of 3 to 4 weeks – receiving Chemotherapy, stem-cell transplant and then into isolation and recovery.
January 2012 – Everything proceeded smoothly and without issues other than being a bit tired as well as neuropathy starting to be felt in my hands and feet. I continued to exercise three to four times a week. I should add that since this is the middle of basketball season, I coach 2 CYO teams – one of 7th grade kids and one of High school juniors. Through all of this and in and out of gymnasiums, I never caught so much as a cold. I will explain what I was doing at the end.
February 2012 – As we headed into February, by the middle of the month – my M protein was dropping, as were my light chains. My body functions were strong and my blood tests were all moving into a beneficial range including my kidneys and hemoglobin readings. The doctors felt comfortable in planning and scheduling my stem-cell transplant immediately and so we scheduled the hospital program.
At the end of February, we prepped with body scan, x-rays, and all the necessary tests. We found three stress fractures in my vertebrae and that was about it.
March 2012 – Our Basketball season ended on March 4. March 8th & 9th I had my blood farmed for its stem cells and I was able to give them over 13 million cells during the two bloodletting sessions, painless and yet time consuming. So, hospital here I come – Monday the 12th.
- March 12 – Check into my room at the Cleveland Clinic on the Myeloma/Leukemia floor.
There is a small exercise room on the floor and I set aside 3:00 to 4:00 each day to
exercise – bike, tread mill, and lightweights. Exercised every day. Walked the
floors every day – every hour on the hour for 10 minutes.
- March 13 – Tests all taken and prep for chemo in the morning. Exercised.
- March 14 – Nurse walked in and hung the chemo bag of Melphelan which took about an hour
to enter my system. I continued to walk the floor every hour and exercise at 3:00.
- March 15 – Nothing unusual. Continued my routine and all went well.
- March 16 – Stem Cell injection day. Two bags of my blood’s stem cells were returned to my
body. All went well.
- March 17 – All is fine and sun is shining. Happy St. Patrick’s Day.
- March 18 to 24 – Everything went quite well with no side effects from the Chemo or the stem
cell transplant. The only issue that I started to experience was a bit of tightening of
my femoral muscle in my right leg. Although I continued to walk hourly and
exercise, I did become quite a bit more tired throughout the days.
- March 25 to 27 – I made sure to rinse my mouth not twice but three times a day to keep any
infection away. My white cell count never truly crashed to 0. The lowest they went
was to about 1000. I had two days of a bit of tough swallowing and a white skim
coating my mouth and that was all. Popsicles helped greatly.
- March 28 – doctor came in and said everything looked quite good and you are being sent home
tomorrow. First – surprised then Hurrah!
During my stay, I took no pain medication at all. I felt that my body would heal itself and to drug it with Oxycodone or Neurotin would only mask the pain, not rid my body of it. Oh yeah, one last thing: being a basketball junkie surely helped – to be able to sit in bed all day and watch the NCAA basketball playoffs was heaven! The first time ever that I was able to simply, sit and watch March Madness with nowhere to go and no wife hovering over me asking when the games will be over. Pinch me – I must be dreaming – and enjoying every minute of it!
Once home – the week brought about two changes that were to be expected, just earlier than now. First, my hair started to fall out. And Second – I slept and slept and slept for 4 days. Then, one day, I simply said – “that’s enough sleep!” I started to force myself up and out to walk every day. After the first week at home, I started going up to the community Recreation Center and started exercised in the pool every day for the next 3 months. The best thing of this time – I did not have to shave! I hate shaving! This spoiled me!
Over the time, the only true pain came from my right leg and the tightening of my femoral muscle and femoral nerve in my right leg. It is said that this is a normal side effect of the chemo. And, in addition to this, the neuropathy continued to increase steadily in my hands and feet. I began to treat the neuropathy with acupuncture, electrical stimulation (TENS unit), hot Jacuzzi baths and coco butter rubs. I did some physical therapy for my back and my legs and it was nice but did little to improve my conditions.
So, from July on until today, my recovery has shown no level of M protein present – Undetectable – Total Remission. And, the light chains are present but ever so slightly. All my vitals are good and my blood work all shows acceptable ranges in every category.
Did I do something differently? Did I take something that no one else was taking? Did the doctors know? What did I do? What was I taking?
- First and foremost – A Positive Attitude is a must!
- Vitamin Supplements – Turmeric, Calcium, D3, Fish Oil, Ginger, Acety-L Carnitine
- IP-6 – the MOST IMPORTANT SUPPLEMENT I TOOK!
This is recognized as one of the leading cancer preventative supplements
that one can take. When I took it, I heard of it through a work associate of my
son’s. That person had given it to his 5 year old son and his 65 year old mother –
both suffered through far more serious cancers than MM and were doing great – 5 and 10
So, I talked it over with my doctors and both said that they had heard of it and
said go ahead. I started taking it immediately upon diagnosis in November and
every day since till today. I was the test object! I took it in the hospital every day
but chemo day so it would not interfere.
During my hospital stay, I took it every day except on my Chemo Day. My white cells
never crashed below 1000. I never got mouth sores either. I think the IP-6 helped as did
rinsing my mouth 3 times a day rather than the 2 they recommended. My mouth covered
with a white coating for 2 days and it was gone. Popsicles helped too!
I have now forwarded my usage of IP-6 to a doctor with cancer, my sister-in-law with
breast cancer as well as many others. In each case, their numbers improve after the first
few weeks of taking it. I know many still are nonbelievers. Yet, you know what I said, what do you have to lose? IP6 has no side effects. It is good for you. It is totally a natural
product. So, if it works and shows positive results – why not!
Look it up for yourself on the internet.
From day one, till now, I have not had a cold. I have felt great. I have responded better than most to the treatment I was given from the Revlimid to the Chemo to stem cell and now to my current regimen.
To be continued…. (Click here for Part 3)
- Richard’s Myeloma Story Part 3: Neuropathy and Tips On Living With Myeloma
- CureTalk Interviews Jack Aiello, Multiple Myeloma Survivor and Advocate – Part 1: Jack’s Myeloma Story
- 10 Year Multiple Myeloma Survivor Shares His Story
- Multiple Myeloma Disease Progression and Treatments – Dr. Parameswaran Hari (Myeloma Specialist), Is the lead member of a Cure Talk panel to discuss treatments for relapsed, refractory, and high risk myeloma
- Myeloma Cure Panel Highlights: Dr. Parameswaran Hari Talks On Multiple Myeloma Disease Progression and Treatment – Part 1