BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: neuropathy

  • Neuropathy update

    Neuropathy update

    It has occurred to me that it has been a long time since I’ve talked about my chemotherapy induced peripheral neuropathy. At about this time last year I saw a pain doctor. Just in passing he mentioned the option of a 24-hour time released gabapentin (known as Horizant). It often isn’t mentioned because it isn’t on most insurance formularies (meaning it costs patients more). One big reason to chose it is that it reduces pill fatigue. One point that insurance companies and doctors seem to miss that is that it works a lot better. It is unfortunate that the efficacy of a medication isn’t taken into account because of insurance companies, and it really annoys me that insurance companies don’t take into account the efficacy of the medication. It is one of the things that angers me the most about this healthcare system.

    One of the biggest advantages to a time-released version of the medication is that it is always in your system. With the other gabapentin, I’d need to take 4-pills every 6-hours for it to be equivalent. That means waking up in the middle of the night. On gabapentin, my neuropathy was always worse first thing in the morning. That was, in part, because after 8-hours of sleep I no longer had gabapentin in my system. Gabapentin also makes some people drowsy. So taking it 4-times per day can be really disruptive. The horizant makes me drowsy, so I take it at dinner and it helps me sleep at night (a double win because hormone therapy mucks with sleep patterns).

    For me, Horizant has been a miracle drug. I’m willing and able to pay the extra for it (it isn’t cheap). It means that when I wake up first thing in the morning, my feet don’t hurt. It also means that my feet don’t hurt when I get up after sitting. It used to be that the first 10 steps were filled with burning pain in my feet.

    I’m noticing that my neuropathy is improving. I still go through phases where things burn, but then they are much less intense. I notice that I have much more feeling in my lower legs and feet. This makes getting IVs in the legs a lot more painful, but that is a worthwhile trade-off for improved neuropathy. It used to be that I would lose feeling in my feet after 20 minutes of hiking. Now I don’t even notice my neuropathy until around the 90-minute mark. And even then, what I’m noticing is not nearly as bad as it used to be. So, I’m happy to report that my neuropathy is improving.

    In January, I’ll talk to the pain doctors again. Anytime I mention going off of the Horizant, it is suggested that I stay on it. It is also used for other medical conditions that I have, like back pain from arthritis, reducing the side-effects of hormone therapy (e.g. making hot flashes less severe, treating restless leg syndrome), and treating post-surgery fantom pains. My healthcare team feels it is doing more for me than just treating my neuropathy.

    And so, as this year is coming to a close, I’m happy to report that my neuropathy is doing much better. I’m finally starting to feel like I’m getting at least some of my health back. I’m hiking further than I ever used to – with a 10km (6-mile) hike not being out of the ordinary.

  • Nothing quite feels like you expect it

    One of my fears has been regarding neuropathy. It is a common side effect for the Paclitaxol (aka T-Chemo) which I start on Labour Day (September 1st). It is also a less common side effect for AC chemo. It seems that I’m destined to experience it now!

    It all started this morning, with some tingling in my feet. I noticed that the front pads of my feet were a bit tingly (sort of like they were about to fall asleep but had not yet). Unfortunately, it didn’t get any better, and now I’m finding it a bit painful to walk – I can feel myself compensating for the tingly (which is less tingly and more like fine needles stuck into my feet). I only seem to notice it when I’m standing / walking – so it doesn’t bother me at all when I’m sitting or laying down (which is good). It may seem counter-intuitive, but the more I walk, the less painful it is (it isn’t really that painful, rather it is annoying).

    So, now I’m going to put on my running shoes and go out for a walk – in hopes that getting the blood flowing to my feet through walking will make the problem go away.

     

  • Preparing for neuropathy

    I have been thinking about neuropathy a bit lately – in part because several strong women in my support groups have been having neuropathy – specifically with the Taxol chemo. I’m currently on AC chemo, but when that is finished, I do 12 weeks of taxol.

    Neuropathy is one of the potential side effects. It can happen in both hands and feet. In hands it means that typing becomes challenging as you cannot feel your fingers and fine motor skills become challenging. In the feet, walking and biking become a challenge. For biking, the issue is not so much the pedaling (I have clip pedals), but rather the stopping. When you stop you typically put one foot on the ground, this can be a challenge if you cannot feel your foot!

    To deal with neuropathy in my hands (if it happens), I will likely be using Siri a lot. I already use dictation a lot on my iPhone so that I rarely ever type anything using the iPhone keyboard. I have dictation turned on for my Mac, so I all I need to do is hit the fn key twice and then talk to my computer, and the words appear. I can do about a paragraph at a time. It is truly amazing to see just how much voice recognition software has improved over the years. For those using PCs, I can highly recommend Dragon Naturally Speaking. I’m not sure how well it works with different accents, but it seems to do Canadian pretty well (although words like tour need to be trained).

    To deal with neuropathy in my feet, we are looking into stabilizers for my recumbent. I had originally thought I would need a trike, but we really don’t have the space for one in our apartment, plus the cost is a bit much for something that I would only need temporarily. I will need something to help with balance if I have neuropathy, but also after surgery. The big advantage to my recumbent is that it has under-seat steering, so I don’t need to lift my arms to steer. However, there is an issue with balance. We have since discovered that one can buy various stabilizers for bikes. These are like training wheels but designed for adult bikes, and are much sturdier. Now we just need to research which stabilizers work best for my ‘bent.

    Another issue we need to deal with is groceries. Yesterday, after grocery shopping, I couldn’t carry the groceries back to the apartment. I had to make three trips, because any weight on my left side caused bleeding at my biopsy site. So, we will be looking around for a cute cart that will allow me to load groceries from the car and pull them up to the apartment. I had a cute one from IKEA in Ottawa, but ended up leaving it there when I moved.

    So, planning Becky is hoping for the best but planning for contingencies just in case.

     

     

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