Perpetual Neuropathy

Stop waving your hands out there. I see you, all ready to jump on me and say “Hey, Doofus, it’s Peripheral Neuropathy, not Perpetual.” Au Contraire, mon ami. For some of us, perpetual is exactly the right word. Let’s roll back a little:  I have Multiple Myeloma. I’m in the 1% class. No, that doesn’t mean I’m rich and think contemptuous thoughts of the economically weaker. It means that the Myeloma eating me alive doesn’t manifest the proteins that Multiple Myeloma people speak of so often. An M-spike doesn’t have anything to do with me.

But when it comes to side effects, particularly neuropathy, we tend to be a part of the group that gets hit more severely than those in the more populated 99%. I am the perfect example of the leastmost population. While I haven’t the worries about damage to my kidneys, liver and other organs affected by the unwanted proteins, Multiple Myeloma dissolves my bones at a vastly greater rate than experienced by our community’s majority. It gives me a unique perspective on the cancer, and I grant readily that my views are often dim. I am told that I have matured significantly when it comes to my writing, but it’s also true that I have been able to “settle in” to having Multiple Myeloma; it’s going on five years since I was diagnosed –already at stage three when it was found. At the time of my diagnosis, my oncologist gave me six months to straighten out my affairs, and the prognosis did nothing to lighten my mood.

Hindsight is 20/20 as the expression goes, and I can attest to the validity of that statement. At least insofar as my cancer is concerned. As a non-secretor, my oncologist, a hematologist of 40 years experience put me on a regimen of Doxorubicin. My response (physical and emotional) was rather negative because it almost killed me on the first infusion. And then again on the second. When my oncologist tried to convince me to take a third shot at it, I declined, and rather vehemently –having grown tired of spending a week in ICU suffering near-lethal anaphylactic and toxic shock. So we tried a years worth of Velcade cycles. This did me no good, but it exposed me to the agonies of peripheral neuropathy in spades. Knowing what we do now, between my oncologist and I, we’d have probably chosen Thalidomide or Lenalidomide instead, considering that Velcade is an antiprotein therapy and not really suited to someone without the pesky proteins. But we went with Velcade, because of  the conventional wisdom which says to treat non-secretory Multiple Myeloma the same as in all cases.

I lost the ability to use my feet and hands due to neuropathy. The pain was so severe that any attempt to stand or even grip a fork to eat with resulted in pain that literally caused me to scream because it was so profoundly painful. The fact that it was unrelenting, and for so long a time, I literally gave up and went in search of a physician who supported Death with Dignity. Washington, my home state las legislation permitting it under highly specific and controlled situations. None of the drugs like Gabapentin did anything to relieve the pain, it only compounded the discomfort by adding severe nausea to the discomfort menu. After a year with Velcade treatments, we finally abandoned the treatment because it was hurting me and taking more quality of life from me than the cancer ever did. And believe me, the cancer took a big chunk out of my mobility and comfort all on its own. I had to take radiation three times to kill off lesions/tumors that were exquisitely painful. The radiation worked wonderfully, I might add.  With the Multiple Myeloma still rapidly progressing and the oncology team more vehemently ratifying a lethal prognosis, we decided to give Lenalidomide (Revlimid) a try. Sadly, with some patients, myself among them, neuropathy was very slow to wane away and would come back like gangbusters almost at the hint of any new treatments. The break in my therapy had nearly eliminated any neuropathic pain and so we elected to take another stab at slowing the cancer. I made it through a cycle and a half before we had to stop because of the disabling pain that rushed back to taunt me.

After a couple of months without further treatment, quite mysteriously, the progression of Myeloma seemed to stop, going into a holding pattern in early 2010. It took the entire year and a month or so of 2011 to leave me with reduced neuropathy in my feet –and the rest of the side effects gone at last. But to this day, my feet are still very sensitive to any pressure, and provide me with that ‘so cold its hot’ burning pain so common to those who get neuropathy. My oncologist and the teams in both the Spokane VA and the Seattle Cancer Consortium all agree that the current level of neuropathy I experience is permanent. As a result, to provide some lightness to the distress, we now refer to my symptoms as Perpetual Neuropathy.  Things were pretty good from March 2011 until the end of December 2011, when the various symptoms that brought me to the doctor in the first place, returned. I have body aches, tremendous hot flashes, constant constipation, simple bruising that’s slow to heal, daily bloody noses, and bone pain emanating from my shoulders, neck, lower spine, hips, thighs and feet, and in my wrists and fingers. X-rays show lesions and areas of bone deterioration in all of those places. Nearly a  third of my pelvis is just plain missing. Atop it all, the neuropathy of treatment is still there to make it all worse.

I am giving treatment some thought again. And oddly enough, considering a chemo plan that includes Doxorubicin, my old nemesis. My oncologist and I are requesting comments from  Multiple Myeloma experts on the possibility of tiny dose Doxorubicin, perhaps augmented with low dose Lenalidomide.  But because of my perpetual neuropathy, we’re moving very slowly and cautiously because a return of neuropathic pain could likely saddle me a with a greater level of pain that I would never get over. Sadly, I cannot tolerate steroids well, and so I don’t get the benefit it might provide to bolster the body against the toxic effects of chemotherapy. When we’ve heard back from the sources we’ve tapped for information, we’ll use it to decide whether to spin the cylinder in the chemotherapy six shooter for a game of chemo-roulette.

So those with their hands up and waving for my attention to correct my malapropism, relax. I was highly accurate in calling my side effects Perpetual Neuropathy. As the five year mark approaches, it makes me nervous to think of myself in the category of those who perish. But I bolster myself with the thinking that my cancer backed off once, perhaps my Multiple Myeloma can be convinced to do it again.

Some of us who undergo chemotherapy do so at a much greater disadvantage than others. It’s simply a matter of of circumstance. I’m a non-secretor sensitive to neuropathy and unable to tolerate steroids. The good news is that the vast majority of Multiple Myeloma patients don’t have to deal with therapeutic side effects at the level of people like me. We are the few, and our side effects can be as permanent as the rising sun.  But in any treatment proposition, it pays to be informed and participatory. It is we patients who, bottom line, will take offered treatment or not. I can’t help but believe that had I been more informed about what Multiple Myeloma is, and what the chemicals used to treat it did, that I might have taken a different course. One that might not have had the permanent negative impact I suffer today.