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Posts (15)

Sat, May 30 3:25pm · Tamoxifen in Breast Cancer

Thank you for sharing. I’m glad your daughter escaped peripheral neuropathy. It is a life changer. I hope Medtronic is successful.

Sat, May 30 1:41pm · Tamoxifen in Breast Cancer

I’ve been on tamoxifen for 10 years with no adverse side affects. I sure wish I could say the same about Taxol chemo which caused autonomic and peripheral neuropathy!

Oct 25, 2019 · Safety of repeated imaging and scans? Pandora’s box is open in Cancer

As a 13 year IIIB breast cancer survivor, my oncologist still orders an MRI annually, in addition to my mammogram. My cancer was very aggressive and fast growing, and I have a mutation at PTEN which is a tumor suppressant gene. Although I joke sometimes about becoming fluorescent from all the radiation I’ve been exposed to since June of 2006, I really don’t worry about that. I absolutely trust my oncologist, and figure that it’s his day job to be watchful.
MRIs aren’t my favorite thing to do, but I have them play really loud march music, and it gets me through. Sometimes country or Broadway have been on my play list, but as an old (really old) marching band participant, I’ve found that march music works best right now. The rhythm and memories of playing many of the selections make the time pass a little faster 👍

Oct 25, 2019 · Benzos make it worse in Depression & Anxiety

I found out that I had a solitary kidney in 2006 during a PET scan prior to beginning chemotherapy for breast cancer. I was 58. Until I hit my 40s, I was active and relatively healthy. Then I started a new job and then a business which consumed every waking moment until I was diagnosed with breast cancer. At 71, I have this that and the other in addition to all the fun stuff that seems to comes along with aging and being a stage IIIB cancer survivor. (13 years now!)
Living with a single kidney hasn’t been responsible for any of my deficits so far. I am careful to keep well hydrated and don’t drink alcohol. Those are the only things I do to keep my kidney as healthy as possible. So go for it! In addition to being active, I had 2 sons well before I knew I had only 1 kidney.
I think what I’m trying to say is that you can live quite normally with 1 kidney. All the best…

Oct 25, 2019 · Anyone here dealing with peripheral neuropathy? in Neuropathy

Hi Pammy, I have chemo induced peripheral neuropathy and diabetes 2 from the steroids during cancer treatment, along with a couple of other reminders.Congratullation on persevering to be able to walk again! 👍. My daughter- in-law recommended the LEMS shoes this summer, and they have been a blessing. Although I Must use a trekking pole or a rollator for balance, I’m able to walk with some measure of comfort. I’ve read that Xeno shoes are much like the Lems with a wider toe box and zero drop. I’m allowed 1 pair of diabetic shoes a year (with Medicare paying 80%) and I’ve had good luck with the Dr Comfort brand. You don’t have to be diabetic to buy them.
I have read quite a bit about “The Protocol” on the small fiber neuropathy Facebook group but haven’t tried it yet. I understand that it usually takes a while to take effect if it does help, so I’m weighing the cost against the possible benefits. I’ll post to Connect if I find that it does help. I hope you’re in a location to enjoy the lovely fall weather. We’ve already had a light snow, but Mother Nature is teasing with a couple of fall like temperatures every 10 days or so. I really treasure those days as I can be outside more safely. Once winter settles in here in MN, I will lose much of my mobility to leave the house 🏡 until April or May. Wishing you the best …

Apr 14, 2017 · Trying to stay upbeat. in Brain & Nervous System

I’ve had chemotherapy induced neuropathy since the 2nd treatment of Taxol in 2006. It has steadily worsened within the last 2 years including toes to groin and fingers. (ps you don’t walk or balance well if you can’t feel your feet). I finally got through my emotional angst and brought home a 4 wheel rollator with seat this week. It was expensive and not covered by insurance, but I think well worth it to be able to go places again, stand in grocery and other lines. I have brief periods of vertigo, but with the rollator, I can turn around and sit on the seat until it passes. Good luck .

Apr 11, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

A joint study by the University of MN (USA) and Realife (Brooklyn Park, MN) was published in a peer reviewed journal a couple of months ago which indicates Laser IV had a positive effect on a large percent of the participants. I believe it was a 3 year study. The bad parts are that the treatments are currently not paid for by insurance, there are only a few locations that use the Laser IV, and the treatment is still a long way off from being accepted as a protocol. I suspect it will need to go through the Level I, II, and III clinical trials before then.
Of course, funding for these trials will probably be problematic as it is not a drug and the pharmacy industry has the deep pockets to fund clinical trials.

I have a reprint of the study (which of course is pretty technical), and I will seek approval to scan and post it on this and other peripheral neuropathy sites.

Apr 11, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

I also have chemo induced peripheral neuropathy (as well as autonomic neuropathy) which has worsened since 2006 . After 15 Laser and soft tissue treatment this past fall, I regained some feeling in my feet and big improvement in my legs and some in my fingers. I consider myself one of the very lucky ones because so far I’ve only had a couple of extreme pain episodes.
I have participated in Physical Therapy since completing the laser treatments to work on balance and strength. Even though I have improved in those areas my dynamic balance is still poor, so I’m purchasing a rollator with a seat today to improve my mobility and let me get out of the house and take part in some activities … like walking safely. Although I can walk very short distances unaided, and quite a bit longer with my walking stick or Nordic Pole trekking sticks, when I tire, neither are enough to keep me from falling —- thus the seat on the rollator.