Daryl's Multiple Myeloma Blog

Here goes my venture into the blogosphere to let those who wish, view my fight with MM (Multiple Myeloma), an incurable genetically caused disease of the White blood cells and bone marrow.

Some of this might be a bit wordy, but for most of you, the whole process is new and may give you some insight to my new world and that of some others "blessed" with my new reality.

Currently it is March 10th of 2010, just so ya know...Been asked to let my peeps know whassup, so here we go. I can't promise to make daily or even weekly updates, but will post when something of note happens.( or when I am bored out of my wits)


This all started in late August of 2009 with my left hip suddenly starting to hurt more than just the aches and pains of 58 yr. old age...I skied a pile of vertical last year (Just under 300 thousand) and figured I was in pretty darn good shape overall with no health issues.


Down at Mogfest in Oregon, I was starting to hobble around with the fairly sudden onset of left hip pain and feeling quite tired to boot. Knew something was afoot that I wouldn't like.


Made an appt with a known good ortho doc to have a look see. His name is Dr. Stanley Kopp, and he is a truly great diagnostician to pick up this from an MRI picture. He checked me out and decided I needed an MRI and X Rays as something didn't quite make sense to him.


He took a look at the MRI and called me to suggest I do some research on MM and make an appt with my G.P. Doc. for further tests. He spotted a 12mm lesion(hole)in my left hip with more smaller holes in the femur,ribs, skull. He gave me a list of what to have checked and off I went to find out how much trouble I was in.

Took the list to my long time GP doc, Dr Barry Marmorstien, and hit him with it all at once..OK Doc..Got pictures..need at least these tests..got a full body scan scheduled and an appt with an oncologist I trusted after he got my youngest son back from the brink with Testicular cancer 4 yrs ago...About all he could say was you got it well covered..Good Luck


Bottom line was ..A week later I was starting chemo at Cascade Cancer Center at Evergreen Hosp in Kirkland WA. with Dr Matt Lonergan.

Cancer hits everyone differently ..My brain was totally screwed up for about 3 weeks till it all started to become my "new reality". Dont think my poor wife has fully recovered yet, but she is a trooper and as an RN, knew much of what I would be going thru.
I thought that working would be mostly out of the question till my middle son, Matt, said he wanted to keep the business going while I was going thru this. So I started to teach him to rebuild Vanagon transmissions while I did the rest of them. Best thing I had done in a long time..After a few weeks, I could deal with parts, shipping, chemo and talk on the phone and trannies still got done...Amazing how much of a load off my mind and it felt like semi-retirement..Really cool after 6 or 7 day, 70 hour weeks for a few years in Spring and Summer..

Dr Lonergan put me on Velcade and Dex for the treatment. 2 weeks on, Mon & Thurs, and 1 week off for the body to rest with no break for the Dex. Each 3 weeks is a "round" of chemo and 6 rounds (18 weeks) is the norm. Fortunately I am generally in pretty good shape and the chemo, Velcade (actual name is bortizimib) didn't bother me much..Tired overall, but not debilitating and no nausea or hair loss. Now the Dex.... (dexamethasone) is a different story...It is a corticosteroid (sorry, no muscle building here) and makes some people literally crazy with a wild variety of symptoms..I was hyper and wired for most of 3 days after my Thursday 40mg of pills..Not able to sleep the 1st night much, if any, and gradually better the following days. Crashed hard on Sundays, then back to "normal" for a few days. Gotta admit I got a heck of a lotta work done Thurs and Fri every week.
The basic chemo and all went pretty smoothly overall. Lots of trips to the infusion room to get "poisoned" by the sweetest and most compassionate nurses around I think.
Home to relax and recover a bit till the next go round.
Blood work was taken frequently to look for a pile of different things from white blood and platelet counts to the "M" protein (the Myeloma protein marker) to see how I was progressing.
Counts were gradually lowering and the Velcade was doing its thing quite well to kill the Myeloma cells and the Dex was keeping the remaining bad cells from eating into my already fragile bones.
Fragile bones in the body core is the main symptom from what I gather. Many MM patients have collapsed vertebrae after a while and are diagnosed from those type of injuries.
I personally had hip and back pain deep in the bones. Woke up one morning with a cracked rib...Guess I couldn't ski this year huh..trees and I dont always get along.
Bone pain generally went away gradually with the treatment..Still some different spots of pain here and there, but not very bad.

Now..after the basic chemo had been completed and my M spike went from a 3.7 down to a .3, then I was suddenly the property of the Seattle Cancer Care Alliance or SCCA. SCCA is a part of The Fred Hutchinson Cancer Research Center along with the University of Washington. One of the top cancer groups in the country and I am fortunate enough to be so close to them for treatment.
Treatment of MM is kind of a misnomer..No way to get the genes back to their previous state and let the white cells die off after they do their immune system thing, so all we can do it put it into remission for a while and then go on to the next best newest greatest treatment.
Thalidymide, Revlemid and Velcade are the main drugs used currently. Lots of other drugs I know nothing about are combined and used when the first don't work any longer.
Chemo is like bullets..Once you use one..Its gone... and you try the next one and hope it works. There are always many trials going on with different combinations and doses to see what works best.
The next best thing for many of us who are able to get our M spike and basic counts where they should be is a Stem Cell Transplant or SCT. And that is where I am presently.
Going thru a battery of tests to see what protocalls will work for me to harvest my own stem cells. I am having my own cells harvested and reinfused which is called an Autologous transplant. If I got them from my brother, for example, it would be an Allogenaic transplant.
Gotta post this to start with and will continue another time to get all the basics written down.