ME vs. MM: Good, Bad, And Indifferent

In my February column, I discussed my decision to forego maintenance therapy and go drug free following the conclusion of my initial treatment.  I closed the column with the statement “I have made my decision, and good, bad, or indif­fer­ent, I will live with it.”

A bold, confident statement and one I still stand behind.  However, in the weeks since ending my treatment, it’s also one that I think will be easier said than done.

It’s difficult not to wonder whether every unexpected ache or pain may be myeloma related, though this would probably be the case regardless of whether I went with maintenance therapy or not.

Perhaps it’s more an issue that there are a lot more aches and pains than I expected.  I asked about the aches and pains at my most recent appointment and discovered this is actually common for patients com­ing off the Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone (Decadron) clinical study that I was part of.  In fact, many of the patients have been prescribed pain medication for a short time after treat­ment.

Evidently, it can take a few months for the drugs to completely flush from your system and during that period your body may still feel effects from them.  In addition, the dexamethasone hides a lot of aches and pains during treatment and when it’s not taken anymore, things that were being masked during treatment are re­vealed (it’s nice to know the dexamethasone was providing some benefit in exchange for all the negative side effects it caused).

I think this is somewhat analogous to taking anti-inflammatory drugs or muscle relaxers for muscle injuries.  The problem is you are not aware that the injury still exists and you’re more likely to continue aggravating it without knowing it.  I think this may be the case for some of my aches and pains, particularly since I con­tin­ued to exercise and remain active throughout my treatment.

The most notable effects I seem to be experiencing are discomfort through my rib cage, stiff joints, and a deep ache through my left shoulder and upper arm, much like a pinched nerve.

The rib discomfort is something that I experienced several times during my treatment and that I believe was caused by the drugs I was taking.  Hopefully this will subside as the drugs are flushed from my body and I will just need some time for my rib cage to feel better.

The stiff joints and the ache in my shoulder and arm have only shown up since getting off treatment, so I’m not sure what to make of them, though I have had issues with a pinched nerve in my neck and shoulder in the past.

Overall however, I am definitely feeling better than I did throughout my treatment and there has been a noticeable improvement in my energy levels.  I have been playing hockey throughout the winter and while on treatment I was generally winded by the third period.  Since being off treatment, I have energy to spare by the end of the game. I even competed in a hockey tournament this past weekend, skating three games in two days.  Hopefully this will also equate to more energy and endurance during my bike rides (if the weather ever warms up in Michigan).

In addition to worrying about my aches and pains, I also find I am somewhat anxious as I approach my lab tests and appointments, wondering whether everything will be OK even though it hasn’t even been  two months since getting off my treatment.

I’m hoping this anxiety is mostly indicative of being newly off treatment and needing to get a few quarterly tests under my belt so that I can start feeling confident my response will be sustained.

I was discussing this recently with two cancer patients I met at a conference for emerging cancer treat­ments. One was a myeloma patient who was still in remission five years after a stem cell transplant, and the other was in remission from ovarian cancer.  Both indicated they were always a bit nervous getting their lab results.  However, as time went on they found they tended to became more anxious since they both expected to relapse and the longer they went, the greater the possibility that relapse might occur.

I had not considered this and had figured it would be the other way around – that I would settle into a rhythm, get used to it, and over time not think about relapse as much.

I guess I’ll just have to wait and see how it goes and hope I can indeed push it to the back of my brain.

For the past two years, I have been processing everything through a ‘myeloma filter’, but I feel like I’m getting past that, since some days it feels like I don’t even have cancer and I actually think about life five, ten, or even more years in the future.

Peace, and live for a cure.