I started having problems this spring and summer. Usually I would ride my bicycle to work (9 miles one way) and use that as a way to get in better shape and prepare for a fundraising ride in August.
This past February and March I was sick all of both months – cold, flu, even got pneumonia. We took x-rays in March and found no pneumonia, but did discover that my 6th right rib was broken sometime in the past.
The only fall that I had was back in April of 2016 when I had a bad bicycle accident. I made a sharp turn on the entrance driveway to work with the ground being wet. My bicycle went flying left, and sliding on asphalt isn’t fun. We patched up the bleeding and took x-rays of my hip and right arm. Didn’t see anything at that time that was abnormal.
But this spring I got about five days of riding in and I noticed I was walking kind of slowly and my legs were hurting some. I figured it’d stop, and it didn’t. In August I got serious about it and saw my doctor about it. I also happened to notice a hernia one day in the shower. Figured it must be something easy like Lyme disease. We ran a bunch of tests and not Lyme disease or any other tick-borne disease. So we ran some more tests and even took x-rays.
I had seen a surgeon about the hernia. Turned out to be minor and we can fix it at anytime. I figured soon as possible, and scheduled the robotic surgery for August 31.
Friday, July 21, on my way home, my doctor called. I pulled into a gas station to be stopped and so I could pay close attention and hear everything. I got the initial diagnosis: multiple myeloma. We need to do even more blood tests on Monday morning and you need to go see specialists. More blood tests. Wheeee. Saw the specialists on that next Wednesday. They were convinced and gave me a definite diagnosis of multiple myeloma. They also wanted to do a few more tests: bone marrow biopsy and a full body x-ray scan. Now would be good for the biopsy. Ok. Whack. Got to see the little bone sliver. Had to see it
X-rays were that Friday.The x-rays show only one area with a lytic lesion. Happened to be right rib number 6. This is an interesting pattern. Some mass growing around there too. This was another confirmation to the diagnosis.
Wait two weeks for the bone marrow test results: 70% myeloma cells, 30% normal. Definitely Stage 3 IgG kappa multiple myeloma. They scheduled my first treatment for the next Monday, a week+ away. I wanted a second opinion.
I gathered up all of the results so far going back to my bicycle accident, including all x-rays and everything from my doctor and the first specialists. Scanned it all into the computer and OCR’d it so we could search the text at any time. Converted the x-ray files into png graphics so we could look at them. Shared the whole collection with my family via Dropbox. Carefully trying to name things with a date (20170801) for August 1st 2017 and a place so we could easily find the newest data.
Monday comes and a week away is the first treatment, so I call to another center in the area (Dana Farber, aka DFCI) and register as a new patient. A friend who had cancer 15 years ago and was treated there asked for information about the diagnosis. We gave him the info via e-mail. Less than an hour later I’m getting e-mail and a call from the DFCI multiple myeloma folks asking what tests aren’t completed yet (bone marrow test wasn’t done yet). They wanted to see me as soon as possible – right after we got the test results completed.
The appointment was scheduled for the following Tuesday. I cancelled the treatment scheduled for that Monday, and we got to DFCI to do some blood tests and the myeloma specialist there. He ran really late that day. We were scheduled for a 3 pm appointment, but saw him at about 7:30 pm. I would have gladly waited as long as we needed to.
He looked over the test results and also checked me over. Saw acne on my back and the start of a boil. Recommended a good strong soap to use everyday to clear it up. Diagnosis is Stage 3 IgG kappa multiple myeloma. We want to help and we have this new clinical trial that will be starting soon (three drugs plus Darzalex). He was convinced that this trial would put the myeloma into remission. We agreed it was the right thing to do. So we began to wait a little while for the clinical trial to open.
Last week the trial opened, and I got setup for a clinical trial screening set of tests that happened yesterday. Blood tests, 24-hour urine test, full body x-ray, bone marrow biopsy, EKG and more blood tests at the end of the day. Also met with again with the myeloma specialist. Good meeting. Tests showed low sodium (I got doctors orders to eat chips, pretzels, and other salty foods
. He checked me out and my boil had gotten bigger and opened up the day before, so it had a nice gauze over it. He peeked under and the boil attacked his shirt. He cleaned my back up and got it empty and nice and bandaged up. The plan was still let’s do the clinical trial. Either side of the trial will be excellent and hoping to learn more about the interaction of Darzalex.The bone marrow test got blood and other cells from near and above the bone. Saw that. However my bones were a little too soft and didn’t get the little piece of bone this time. The person doing it had been doing this test for folks for 18+ years. So I think she knows what she’s doing. We believed that there was enough collected samples to be able to do the tests.
We’re awaiting the results of the bone marrow test (ten to fourteen days). Then I’ll be randomized with other patients for the study and we’ll see which half of the study I land on.
Lots of stuff happening in suppor. Maureen is my wife of over 30 years and is being very helpful about everything. We get anxious once in a while, but then we remember that God is in control always.
My family are all in the Pittsburgh area and want to help in any way. We talk with mom a lot so she knows everything and spreads the knowledge. We also use messages a lot for updates.
Work is being very helpful in every way possible (do health things first and eventually update us when you can), work from home when you need to, and don’t work when you can’t. I write software for a living; I think of it as making computers sing inside. Mostly I observe, then describe and sometimes I even describe things to a computer as a program.
We have lots of great support.
It’s still just the start of the journey. Lots to happen yet. I am hopeful that my myeloma will be going into remission and hopefully staying there.
We also have lots to learn. Lots of new words and combinations and not all of them make any sense yet.
Next step will be starting treatment in a couple of weeks. 11-hour infusion, sounds long. Hoping.
Wow, that’s longer than I thought.
Dave
Long story short: Hi! It’s nice to meet you all. Looking forward to learning a lot and any help or pointers will be greatly appreciated.
