[Steve Horwitz]

Steve, diagnosed in November 2017 at age 53

by Steve Horwitz on Sat Apr 28, 2018 3:39 pm

Hello all.

It is very comforting to read so many stories that sound much like mine. I was diagnosed last November (8 months after getting married for the second time). My concerning symptoms were kidney-related, as I was convinced I had diabetes. I was overdue for routine blood work at the time, and decided I should get it done based on those symptoms. Like many of you, I was active and quite healthy (other than some mild high blood pressure), and I have almost no cancer history in my family. The bloodwork showed very high calcium levels, enough that my GP's office was concerned that I needed to go to the emergency room. After running the bloodwork again the next day, I found myself admitted to the hospital. The nephrologist who consulted with my GP knew it was multiple myeloma based on the blood work, but they also found some lesions and two small compression fractures in my back.

I should note that two weeks before that day, my wife and I had been in Israel and we climbed up Masada (the hard way!) together. Discovering that I did that with those fractures officially makes me a bad-a**

Thankfully, the excellent hospital care I received avoided any kidney damage, and my back issues seem to have mostly healed. I do have Stage III because I have one of the chromosomal abnormalities. I was on Velcade, Cytoxan, and dexamethasone for about four months. My kappa count was 2006 when I started that treatment in early December. By March 1, it was down to 11 and has stayed in that range since. I also tolerated the treatment regimen extremely well.

I am an economics professor and have been able to teach online this past semester, but I've still been able to make the hour-ish commute to my office once or twice a week. I've also, since late February, been able to travel for professional work, including a multiple day trip to Las Vegas at the start of April. I have very little back pain, and my stamina is pretty good. I feel very fortunate that I've been able to keep up with my work through the first stages of treatment.

I am now on my second day of growth factor shots for my stem cell transplant, which I will do inpatient starting on the Tuesday after Memorial Day here in the U.S. I thank all of you who have posted stem cell transplant journals here in the forum. Reading those has been very helpful in preparing myself for what's to come. It seems the consensus is "it's not as bad as you might fear, but it's still not fun." I hope that my near-absence of side effects from the induction therapy bodes well for the stem cell transplant process!

I look forward to learning more from the people and resources here. I hope to stick around for a good, long time.

[Mark Pouley]

Re: Steve, diagnosed in November 2017 at age 53

by Mark Pouley on Wed May 02, 2018 2:21 pm

Your journey so far sounds good. Good luck with the transplant. My advice is to stay as active as you can during the recovery time. Walking everyday is big, and I think doing so had a lot to do with my recovery. I also think my wife / caregiver did a terrific job keeping everything germ free and helped keep me out of the hospital. While you are starting in-patient, you want to stay vigilant when they send you home. I didn't feel we were paranoid or overboard, but careful.

[Cheryl G]

Re: Steve, diagnosed in November 2017 at age 53

by Cheryl G on Thu May 03, 2018 8:18 am

Hi Steve,

Glad to see that you've responded well to your initial therapy. It's great that your kidney function is back to normal and it looks like you've avoided any permanent damage.

It looks like your kappa level is back in the normal range. Has your kappa-lambda ratio normalized, as well? Also, did you have an M-spike at all at diagnosis and, if so, has it been eliminated?

I hope you haven't had any issues with the growth factor shots and that your stem cell collection goes without a hitch. Here are a couple of forum threads that you may find useful as you go through the mobilization and collection process:

"What to expect during stem cell harvest / collection?" (started Oct 20, 2015)

"Stem Cell Harvest - The Complete Guide" (started June 24, 2014)

You probably can find more discussions by typing either "collection", "collecting", or "mobilization" into the forum search box.

Good luck!

[Steve Horwitz]

Re: Steve, diagnosed in November 2017 at age 53

by Steve Horwitz on Tue May 08, 2018 1:28 pm

Thanks folks.

Just a couple of updates:

1. All the talk of M-spikes got me back to my test results because it was not something I recalled discussing with my oncologist at the original diagnosis or afterward. In the bloodwork in my online file, all I see is the presence of the IgG, but no numbers to go with it. So I'm assuming there was no M-spike to worry about. She has been more focused on the kappa-lambda ratio and my kappa level.

2. My stem cell collection process went pretty smoothly. I didn't have any real issues with the growth factor shots other than some very minor back discomfort. After three days worth, we checked my blood and the count suggested that I would probably need two days of collection. My transplant doctor describes himself as "greedy" and wanted 7 to 8 million cells so that he would have plenty for 2 transplants. (I like that fact that he's thinking that far ahead!) He also is a believer in using 3.5 to 4 million per transplant as he thinks that promotes faster recovery. And when he says "I have a 10-year plus plan," I like that too.

I had the two IV treatment and not a PICC. I wasn't really uncomfortable, just bored for 4 hours. Thankfully several great Seinfeld episodes helped pass the time. Got 5.2 million that first day, so we came back the next day and got another 3.6 million more for a total of 8.8 million. The hardest part of that whole process was trying (and I emphasize trying, as opposed to succeeding) to go almost 5 hours without peeing at age 54!

So I'm in my "Four Weeks of Freedom" until I go inpatient for the transplant on the 29th. I am in remission. I have no pain of any consequence. I'm sleeping well thanks to no dex. I have most of my energy. Other than some minor neuropathy in my feet, I feel great. What's coming isn't going to be much fun, but we all gotta do what we gotta do.

[Pippy]

Re: Steve, diagnosed in November 2017 at age 53

by Pippy on Mon May 28, 2018 11:54 am

Steve,

I am new to the forum, but I saw that you are going in tomorrow for your stem cell transplant and wanted to wish you the best for a smooth-as-possible procedure.

Your story has many echoes of mine. I, too, am 53. I was diagnosed last year and had my stem cell transplant in October, just before you were diagnosed.

I saw the question about your M-spike, and I am wondering if you have kappa light chain multiple myeloma like me? I never had an M-spike (until I started on Darzalex, but it gives false positives).

I'm glad you were diagnosed before you had any kidney damage, whew. I was lucky that way too, though unlucky in that I was refractory right away until they could find a drug that worked.

I loved your story about your climb up to the Masada with two back fractures. You are clearly very tough and will weather the transplant just fine. For me, it is just a blur now. Take all the anti-nausea medications they throw at you, both in the hospital and after, and remember, the nausea and ill-feeling will go away. I was back to running three months post-transplant and am now back up to 5 miles a day.

I hope everything goes well for you! Channel that Masada hike when the going gets tough!

Courtenay

[random]

Re: Steve, diagnosed in November 2017 at age 53

by random on Tue May 29, 2018 12:09 pm

Good luck with your stem cell transplant! The only problem I had with mine was developing blood clots afterward. I walked as much as I could during and after, but had chemo-induced gout and was in a boot. Otherwise, no problems at all. Hope yours goes well!