At What Cost?

Revlimid has a monetary cost of about $163,000 a year. An immuno-modulating drug, it kills abnormal bone marrow cells and fosters the growth of new, healthy cells. That make Revlimid, known generically as lenalidomide, an excellent choice for many as an initial chemotherapy agent. But Revlimid has also been demonstrated to produce secondary cancers when taken over extended periods, causing a lot of question as to whether it makes sense to use it in a maintenance role. The fact is, there are quality of life issues involved, and they need to be factored into any decision to use a maintenance chemotherapy.

In situations where the Multiple Myeloma has gone asymptomatic, there is a lot of reason to forgo maintenance treatment. The possibilities are that peripheral neuropathy can manifest itself, the Multiple Myeloma can be incited and aggravated, and a secondary cancer stands a reasonably high chance of appearing. Then there are also clotting issues, DVT for instance, that can arise through the use of the Thalidomide analog. That’s a lot of risk for a drug that costs more than a quarter million dollars an ounce. Especially when you consider that it can be invoked as a chemotherapy agent at the onset of symptoms and have equal efficacy.

In personal terms, I’m a fence sitter when it comes to maintenance chemotherapy in the absence of symptoms. Even without the risk of secondary cancer, I believe that the medical and quality of life issues exceeds its worth. However, I also tend to believe than an ounce of prevention is worth a pound of cure. There is no real way to prove that Revlimid acts as a preventative agent for relapse. There are studies that can be interpreted as the drug having positive effect in staving off a relapse, but the bottom line is that there is no real way to attribute Myeloma no show as a direct result of using Revlimid.

When my cancer went into remission it could have been said to result from the aborted use of Revlimid. That the Revlimid had enough time to put the cancer at bay before the side effects demanded therapy be stopped. But the cancer returned after a few comfortable months only to drop back into remission again, and this time there was no therapy involved at all. That gives weight to my team’s view that chemotherapy had no positive effect for me, it only saddled me with side effects. My remissions were as unrelated to treatment as the relapse. A large contingent of oncologists believe in maintenance dosing, and favor it on the an ounce of prevention basis. Their numbers are reducing though, as more information becomes available on blood clots and secondary cancers emerge.

It’s a sad fact that too many treatment strategies for Multiple Myeloma are guesswork. Precious little tailoring is done, matching a patient with a particular regimen. Instead, the latest darling of the mainstream is gravitated to, and with dosing that matches a physician’s gut leanings or their teachings rather than by any patient gauge. This is somewhat perplexing to me, as I tend to believe that absent very good reason, all therapy should commence as a low dose approach, feeling one’s way along and looking for response rather than the gunslinger hip shooting that seems to be the soup du jour of Multiple Myeloma treatments. Especially in light of the research results appearing that support my opinion. But I’m also the first to admit that I have a prejudice. I was permanently damaged by my therapies. Greater caution should have prevailed since I was unable to tolerate the steroids that modulate the therapy toxins, leaving me wide open to their ravages. I don’t blame my oncologist of the time, he was doing what he thought was best. But I was also his first case of Multiple Myeloma, a factor I wasn’t made aware of until after my therapies had been suspended. A good thing came of it all, he is a lot more cautious in his approach, having adopted the low dose careful approach to treatment.

The more research performed, the more indications appear that show us that chemotherapy agents need to be used as sparingly as possible. The numbers of studies regarding secondary cancer heap themselves on top of higher clotting incidence and more highly profound neuropathic appearances. Yet we continue to see news articles claiming that maintenance dosing shows great promise. The fact that the two different schools are so highly contrasting is, at the least, unsettling. It demonstrates clearly that patients need to be involved in their own health care decisions, and reinforces that a patients gut feelings are equal in validity to those of their oncologist.

I have had many people ask for my opinion on chemotherapy. They write to me because I have been around and writing for a lot longer than many Multiple Myeloma patients manage to survive. I suppose that gives me some celebrity. But the first thing I always tell people is that I’m not an oncologist nor a hematologist. My opinions are entirely those of a layperson. The next thing I suggest is that they do their own research and to monitor how they feel. But to insist on a low does approach unless their physician can offer clear and empirical reasoning for high dose. Then to monitor the effects of that treatment and weigh it against how they feel. The quality of one’s life is an excellent indicator as to whether the proper course is being taken. There is bound to be discomfort from chemical therapies, but one’s reaction to the treatment should not be to make them so miserable that the joy and value of their life is diminished.

That’s my opinion. Or, as they say, that’s my story and I’m sticking to it.


Dex Reflections

Reaching for Seashell,A suntanned person reaches for a seashell washed up from the Indian ocean stranded on the beach in the maldives photo

by Kris Kelly 8/25/10
I sit in the warm grainy sand.
Back and forth I massage my tingly toes and feet in the warmth of the grains.
Messaging my mind with myeloma thoughts.
Always there when my world is quiet.
The hot sun warms my cold bones,
my chemo curls.
The hot sun melts into my parched skin
dried from drugs, and side effects.
I don’t recognize parts of this body anymore.
Portraits from my past are just faint ripples
of my reflection in the water now.
My youthful appearance changes as the effects
of dex puff and fluff shaking my nerves, my hands, my patience.
The dex waves this week seem stronger.
The foaming swirls swoosh up to my ankles.
lapping at my soul.
threatening to overcome my positive thoughts
my marching-forward-attitude, my sunshine.
I breathe deep, sleep more, try to protect my children from my pain.
I’m hiding my slacking energy behind the strong shoulders of my beloved.
I breathe, I wait, I pray, and then…
The draining dex waves slink back into the sea
and once again I can see the hidden gifts left behind
in the wet, cool, sand.
The shiny twisted shells of miracles.
Each one a unique blessing.
The life I have been given, the smooth, peaceful thoughts of family, love, God.
The tender mercies of my Saviour glistening  among the grains. 
and I arise stiffly, slowly and walk back to my world preparing for another round.

I was diagnosed with Multiple Myeloma October 2008.  Dexamethasone was the first medication I was prescribed.  I have been on this steroid continuously since then.   Two weeks ago I finished up my last round of Dex.  I go in for blood tests, a PET scan and a biopsy next week and then meet with my Oncologist at Huntsman a few days later.   Assuming that my “numbers” are all good, I will be done with maintenance treatment!   

I was feeling pretty poetic and somewhat dramatic as I wrote this poem a year ago.  I just wanted to get down on paper what I felt on my “dex days.”