My second appointment with the pain management specialist was today and the news was not encouraging.. The primary answer is that in patients that received my chemo this kind of neuropathy can happen. There is no real predictor for it, no prevention, and really- no effective way to manage the pain.
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For a lot of people, the neuropathy dissipates or goes away completely. But for a lot of people- it just doesn’t. For those that continue to have issues there are few drugs that can work: most are also used as anti-epileptic or seizure medications because the primary issue is over-sensitivity or over-firing of neurons in the affected areas. Gabapentin, which they had me on during chemo worked at first for me, but stopped shortly after my chemo ended.
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The next common drug is the Topamax (or Topiramate which is the generic) that I’m currently taking. The added benefit of the Topa is that one of the side-effects is often numbing of extremities. So in addition to quelling the pain of the neuropathy it can numb the areas leading to additional pain relief. So far, that hasn’t really been the case for me.
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Rather than discard the Topa all together, we’re going to double the dosage and I’m going to see the PMS (pain management specialist) again in 2 months. If after a month my pain is not being helped, or is continuing to get worse (as it has this past week or so) I’ll email him and we’ll be examining another avenue for relief.
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As far as addressing the pain flares that happen outside of just the usual… 6-8 on the pain scale that I sort of exist at on a regular basis right now, there isn’t really anything they can do. He wrote for another 2 refills on my hydrocodone even though it isn’t really doing anything, and we discussed moving onto something more serious but there are a few drawbacks.
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If the topa continues to be ineffective there are 2 other drugs we can try, but he is reluctant to do so. With scrips like the Gaba and the Topa there are neurological side effects (word salad, cognitive disruption, memory issues, brain fog) that have been obnoxious… but that I’ve been able to work around. With the 2 other drugs- there are some very VERY serious and systemic side effects. Things like blood toxicity and other scary shit I don’t even remember. They are essentially last resort treatments. Before moving onto those he wants me to give serious consideration to participating in the toxin trial.
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The toxin trial :deep breath:.
The toxin trial actually sounds really promising except for one thing- the time commitment. It would basically mean missing a month of classes. (Probably). It is a double-blind study so there is no guarantee I’d end up getting the medication, however, since the study is not so much a “does it work,” but more “what dosage is most effective” there is an 80% chance of ending up in a group that receives the drug and only a 20% chance of receiving the placebo.
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The drug itself is derived from (get this) fugu. From the brochure, “WEX purifies teh tetrodotoxin from fugu for the use in this trial. [It] is given by injection subcutaneously.”
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And despite my previous assumption it’s not meant to paralyze the nerve cells but rather works to inhibit sodium ions from entering the nerve cell altogether. The idea is that it reduces the pain signal by keeping the sodium ions from entering the cell altogether.
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It sounds really cool (if it’s not happening to your feet I guess).
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The time commitment problem is that the trial involves 4 phases
1) Screening visit (2 hours)
2) Baseline period (7 days with one visit approximately 2 hours)
3) Treatment (twice daily visits 6-10 hours apart for 4 days each lasting approximately 1-2 hours)
4) Follow up (4 weekly visits of approximately 1-2 hours)
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Now reading it back it sounds like it would only be one WEEK of classes that I’d probably miss, not one month so maybe it’s more manageable than I thought.
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Hmm.
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Either way… it all sounds super complicated in the trial paperwork (right, what clinical trial doesn’t). But at the same time- I am seriously living at anywhere from a 6-8 on the pain scale right now. CONSTANTLY. And that’s without random flares that take me up to a nauseating 9/10. So, I mean if this could really help… The trial, by the way, is the main reason he was reluctant to switch me from the hydrocodone to something stronger like oxy. One of the disqualifiers for the trial is extended release opioids. He’s not completely opposed if we reach that point, but to keep the trial option open he doesn’t want to take that step yet.
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My primary concerns about this are #1- will my professors work with me if I move forward (I know Jimmy would, and I’m FAIRLY certain Ben would if I sat down and explained and could still get my assignments in… I mean I can always take my laptop with me to UT to do editing while I’m hanging round between injections) and #2- what happens afterwards?
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Because let’s say I do this, and I get lucky and I’m in the group with the dosage and it works like gangbusters. The study ends and then what? Do I get to walk out with a prescription?
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Or do I go back to shit that didn’t really work that well at all?
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Dr. M says that the people who have found relief with the blowfish toxin have said it’s a bit like people who have used botox for medical purposes- that it works for a longer-term solution than just a daily pill sort of thing.
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I don’t know. I need to know more I think.
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In the meantime, I’d still rather try something that didn’t involve me being back at UT Southwestern Cancer Center 2x a damn day for INJECTIONS. blargh.
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So after talking to Kris (and I’m going to try and get out to my mum’s on Sunday to talk to her and Memaw) I think probably what I’m going to do is try the increased topa, and also see about doing accupuncture. Try that for a month. If I’m still not getting relief, or if my pain continues to get worse- then we’ll see about starting the blowfish trial.
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After that… well- after that I guess we look at the heavy drugs.
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The tl:dr is basically that for now- I live with the pain. We try increasing my current med and adding some acupuncture. If that doesn’t work or help within a month- we possibly try a blowfish toxin trial. And if that doesn’t do it- then shit gets serious.
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