ME vs. MM: Two-Year Cancerversary

The end of this month marks my second anniversary since being diagnosed with multiple myeloma.  It’s also the end of my induction therapy – a two-year clinical trial with Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexa­metha­sone, commonly referred to as CRD, for newly diagnosed patients.

What a long, strange trip it’s been – one I’ll reflect on briefly for those who aren’t familiar with it, then I’ll pass along a few tidbits I picked up along the way, and finish with what’s next.

By far, the first two to three months after being diagnosed have been the toughest of this journey.  For that matter, those first two to three months were probably the toughest of my life (much worse than getting through my teen years, which I previously thought was the worst part of my life).  Nothing had ever prepared me for being told I had a terminal disease.

Dealing with the emotional, psychological, and physical impact was quite overwhelming, not to mention just trying to figure out what multiple myeloma was and decide on a treatment within a matter of a few days, or at most weeks.

After being less than impressed with the first doctor I met with, I was fortunate to be referred to Dr. Jaku­bowiak, a leading multiple myeloma researcher, and get accepted into the CRD trial.  This turned out to be a godsend for me.  It allowed me to forgo a stem cell transplant, which I was not in favor of at all, and opt for a treatment that proved very effective against my cancer with minimal side effects.

I started treatment in March of 2011 and reached a partial response within one month, a very good partial response after two months, and finally a complete response after 10 months.  Since then, it’s basically been the monotony of traveling back and forth to the University of Michigan every other week for treatment (thank you whoever invented audio books).

Some of the low points from the past two years:

• Never quite feeling well.  Seems I’m always either queasy, constipated, or tired.
• Dexamethasone.  Every time I take it, it seems to mess me up either physically or mentally.  Read my earlier column on Agent D if you’d like to know more about it.
• Intravenous infusions. Early in my treatment, the IVs were tearing up my arms to the point I ended up having a port implanted in my chest for infusions.
• Bone marrow biopsies.  I have had three of these over the course of my treatment, and every one of them was painful. Given a choice, I imagine everyone would vote to never have another one.
• A leaky port. During one of my bone marrow biopsies, my port began leaking and completely soaked the front of my shirt and a good portion of the sheet I was laying on.
• Stem cell collection.  It took three days to collect a sufficient number of stem cells, after which my wife said she had never seen me so worn out.
• Having a suppressed immune system. Since my diagnosis, I have had numerous colds, several of which resulted in sinus infections that required antibiotics and even delayed treatment at times.
• Driving to Ann Arbor for treatment (approximately 15,000 miles over two years).

Some of the high points from the past two years:

• The wonderful, caring people at the cancer center.
• Feeling well enough to continue working and exercising.
• Being told I could start playing hockey again.
• Reaching a complete response – my wife and I shed several tears of joy hearing this.
• Reevaluating what’s important in my life, simplifying my life, appreciating life in general.
• Building a relationship with my father-in-law and his partner (who I stay with overnight when getting treatment in Ann Arbor).

Best pieces of advice I received:

• Do at least one fun activity each week.
• Set aside a short period of time each day for cancer, and leave the rest of the day cancer-free.

The first has been fairly easy to accomplish throughout my treatment period, whereas the second is admittedly easier said than done.  There are days when I get treatment or am writing my column that will require more time, but in general I try to limit my cancer time to 15 to 30 minutes a day.  When I am able to do so, my psychological state tends to be much better.

Best pieces of advice I might pass along to others:

• Find a good doctor who specializes in multiple myeloma. I believe this is instrumental to getting the best possible care, and I have seen countless comments here and elsewhere echoing the same sentiments.
• Establish and maintain a healthy lifestyle, thereby improving your body’s ability to fight this disease.  This should be coordinated with your doctor and done within the limits of what you can handle.  Some examples of excellent, low-impact exercises are walking, biking, and swimming.  Most cancer centers will also provide nutritional recommendations for cancer patients.
• Don’t eat your favorite foods after chemo; several are no longer my favorite foods. Also, determine what your “safe” foods are – that is, foods that don’t upset your digestive system.  Strangely enough, mine have turned out to be peanut butter and jelly sandwiches and breaded boxed shrimp.
• Find activities that help take your mind off having cancer. These activities will end up being very therapeutic for you.  Mine have become biking, walks with my wife, and going out to dinner.

So now that I’m finishing my induction therapy, what’s next?

The big question I’m facing is whether to continue with some sort of maintenance therapy.  My doctor has indicated that most of the patients that have been in the CRD trial have opted for maintenance with a lower dose of Revlimid (no Kyprolis or dexamethasone).

On the plus side, studies have shown that Revlimid maintenance can significantly extend a patient’s progression-free survival, and in the case of newly diagnosed patients having undergone treatment with novel agents, it may even improve overall survival.

On the down side, I’m concerned about the long-term toxic effects of all the poison I’ve already pumped into my body, let alone pumping more in for maintenance.  There are also concerns regarding secondary cancers with Revlimid, though that appears to be more of a concern with patients who have undergone a stem cell transplant.  I’m also concerned whether long-term use of Revlimid could cause me to build up a Revlimid resistance and limit the options I would have for my next line of treatment should I relapse.

Mostly though, I think I would just like to be drug-free for a while.

Peace, and live for a cure.