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Mar 5, 2018 08:31AM
Good morning, all.
I'm nearly three years out from chemo, and posted somewhere lease (maybe the venting thread?) earlier this year, but will have to find that post.
At the end of my chemotherapy (dose dense AC-T) my neuropathy was pretty severe, in both hands and lower legs. I could not hold a pen, because my fine motor skills in my hands were affected, and I could only hold objects as long as I could see them. I dropped many things. My legs were numb and frozen from the knees down, and were very uncomfortable. I was prescribed morphine for a time, but could only stand to take it when my legs became unbearable. I was totally cane dependent for over a year, and had several falls. Nowadays, my cane stays in my car, and I use it when I have to walk on surfaces that are slippery, uneven or unfamiliar. Very gradually, my hands have improved, and now my thumbs and index fingers are a bit numb, but not painful.
My feet have not fared as well. I, too, have the “blocks of ice" sensation in my feet. Over the past year or so, things have change a bit. Initially, things seemed to be worse. I had very unpleasant sensations in my toes, like someone was driving nails into the tips of my toes, and I have occasional stabbing hot pains in the sides of my feet. I chose to interpret this optimistically as a sign that there was new nerve activity,
I have also had regular cramping in my feet - my toes will just splay out rigidly, and the cramp often extends into my instep and occasionally all the way to my calf muscle.
I did try amytriptalin, without any effect. My MO offered Lyrica, but that seemed like a lot of side effects so I took a pass.
Last fall, I did a dozen ultrasound treatments on the soles of my feet. I didn't think much was happening with that, but at the very last treatment, I did perceive that the gel was cool, just on the outside of my left foot. Before that, I just assumed that my therapist was warming the gel, so that was a bit hopeful.
I just finished an acupuncture trial, with 12 acupuncture sessions, which was coordinated through my local cancer centre. I don't know that my discomfort level is down, really (fwiw, I guess that I start each day at a discomfort level of about 4/10, and usually it becomes worse as the day goes on), BUT I do seem to have a bit more of a sense of “where my feet are" and I have quite a bit less trouble on stairs. I don't need to get both feet on each step as much, but can move more fluidly up a set of stairs, with one foot on each step rather than “right foot up on next step, then bring left foot onto that step before scaling the next one. I think my feet are a bit less crampy, but time will tell if that is just optimism or actual improvement. I was talking with the researcher at my last session, and she said that the data so far has shown some people, maybe 15%, reported significant improvement, another 20% of so like me didn't have significant improvement, but had some improvement in QOL, like better mobility, and about half didn't notice much change.
Part of my rehab has included balance exercises from day one, so maybe some of this is just practice. I am a bit better at standing on one foot, and can sometimes get a sock on without leaning on something. I still find that I have a limited number of steps in my feet each day, say 2,000 or so, before they are just DONE, and only a hot bath and elevating my feet bring any relief. The sensation is hard to describe, but quite unbearable.
One of the hardest transitions out of this whole experience has been going from a “basically healthy" person to being a chronic pain patient. I take a hot bath every day, and find that this is where I am most comfortable. I do find that if I concentrate very intensely, I can kind of ignore my feet for a time, but that takes a lot of energy, and I am completely spent at the end of the day. At this point, I'm considering whether medical MJ might provide some relief. Has anyone out there tried it?
Warm thoughts to everyone
12/23/2014 Lumpectomy: Right
1/7/2015, IDC, Right, 4cm, Stage IIA, Grade 3, 0/11 nodes, ER-/PR-, HER2-
1/7/2015, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/11 nodes, ER-/PR-, HER2-
1/12/2015 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right
10/19/2015 Prophylactic mastectomy: Left
10/27/2015, LCIS/DCIS, Left, 6cm+, Stage 0, Grade 2, ER+/PR+
5/25/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right
AC + T (Taxol)