Vent about Permanent Neuropathy

Today's neurological consultation included an exam, and a recommendation for muscle and nerve testing and blood tests. This was the first time I've been to a neurologist for my neuropathy, which worsened months after chemo ended.

I was very surprised by the fact he was perplexed by some of my symptoms. While he did say that I had symptoms of CIPN, he did not consider the following symptoms I experience as part of the neuropathy:

- Severe ankle amd lower leg pain after strenuous exercise.

- Difficulty getting up the stairs, out of the car, out of the water, or up from a chair.

- Numbness in the feet after lying down.

- General weakness in the legs.

So, I will start the testing and increase my dosage of Gabapentin.

My friends on this thread have mentioned the ankle/leg pain and weakness, yet he did not think they had anything to do with the neuropathy.

Not sure that I agree.

Bosom, rather coincidentally I had a call from my gynocologist's office yesterday, the nurse said that the results from my bone density test were very good. They were good enough that I don't have to be retested for 5 years, and I have been getting tested every 2 years. So that was good news, it is always nice to hear that something is working right! I do know that I have been taking my Vitamin D3 and Calcium-Magnesium more or less faithfully!

It is the second day after my cortisone shot in the knee, and my face is flushed red from it, as it always does. The doc said that is an unusual reaction, and I should take a pic of myself to show him. I got red always with the steroid pills that went with the chemo, I thought that was normal. I don't know about your back pain causing your CIPN, I don't know why we were susceptible. I remember reading about it as a possible side effect from the chemo, they made it sound so minor and transitory.

Right? Damn it all - why do we know more than the guys with the medical degrees?

The understudied consequences of peripheral neuropathy after chemotherapy

Here's a release about CIPN highlighting the need to study this issue.

Right now, I'm doing six ultrasound treatments on my feet, to see if that has any effect. Having had "frost bitten feet" for over two years now, I'm halfway through these treatments, and though I wouldn't say that I notice improvement in how my feet feel, I am noticing some small differences, which I choose to interpret as cause for optimism. Time will tell

Bosom, my MO was pretty explicit about many side effects, including cardiomyopathy and leukaemia, but foregoing chemo was never really an option for me. By the end of chemo, my neuropathy seemed pretty severe to me - I was numb from the wrists down, and numb and painful from the knees down. I did have significant improvement over the first year, in that my hands are pretty good now. I can hold a pen and a cup of coffee and touch type, and only have some residual numbness and weakness in my thumbs and index fingers. Overall, my legs and feet are better, and i am no longer cane dependent, and just keep my cane in my car for when I am in conditions that are slippery or uneven or unfamiliar. But... the sensation of having frozen feet persists, and if I am tired the numbness climbs up my legs, and my gait deteriorates markedly. Who knew that my treatment would take away my feet? Not me.

At the moment, the focus seems to be on prevention, which is good, but it doesn't do much for those of us dealing with persistent neuropathy. I have found the transition from a (prediagnosis) healthy person to a (post treatment) chronic pain patient very difficult. I can "deal" most of the time, but once in a while I find it overwhelming

Hi Maryna8,

I did have a complicated diagnosis. On the right side, 4.5 cm of TN IDC, and 8x8x3.5 cm of TN DCIS found only when the mastectomy was performed. The only symptom I had was a little skin fold from the tumor tethering itself to the skin, no lump, and the IDC only showed as a1.5 cm area of concern on imaging. TheDCIS had no lump, nothing on mammogram or ultrasound. The left side MX after chemo was intended to be prophylactic, but path results reported at least 6.3 cm of mixed LCIS and DCIS, both ER/PR+, HER-. So, four different kinds of carcinoma, thankfully only one invasive.

The issue of sensation is strange with neuropathy. My feet give me the sensation of always being very cold, but they are not actually cold to the touch. It may be that my Canadian childhood suggests "coldness" as the sensation. It seems to me that the boundary between the sensations of hot and cold are sometimes a bit blurry. I can think of times when I have touched something very cold, like a frozen iron railing, and it takes a split second for my brain to register the discomfort as "too cold" rather than "too hot"

As an example of this, my feet overall seem frozen, but intermittently, I will have a very local point that feels like a hot poker being stabbed into the side of my foot. I refer to those as "burners". Those seem to be in places where I often have cramps.

I, too, have to ration my activity, and find that difficult. On any given day, I seem to have between 1,000 and 1,500 steps to use before my feet turn into heavy blocks of wood that I have to drag around.

I am not on any neuropathy drugs, either. I did try amitriptyline for a while, but noticed no improvement. My oncology rehabilitation therapist suggested ultrasound treatment, and I'm halfway through six weekly treatments. I did extensive pain questionnaires along with assessment of reflexes, etc., and we will redo those after the sixth treatment. Here's hoping!

BosomBlues, not being frankly advised of the treatment risks stinks!!! My MO way clear that neuropathy was a risk and could be permanent in a minority of patients. Of course, we all want to think that we won't be in that minority.

With triple negative cancer, I felt pressured into chemo because of its aggressive nature and limited treatment options. Every day, I wonder if the modest increase in overall survival odds was worth the price paid physically, financially and emotionally. Unfortunately, we don't get a free do-over, but I can't help but think about it and now I get to wonder if moving forward with radiation makes sense. My RO (obvious financial interest) and MO (no financial incentive) both say yes, but, as we know, they aren't the ones living with the consequences.

My symptoms are mild compared to many of you. I wish I could do something to help each of you and thank you for sharing your experiences and suggestions.

Lyn

That mindset is tough to change, isn't it, BosomBlues? Sigh...

I've seen that magazine, SpookiesMom. Thanks for sharing the info.

Lyn

Dear arh, we're sorry that you had to join us, but wanted to say welcome! We're glad that you've found our Community and this particular thread. As you say, you're not alone!

Please continue to let us know how you're doing!

Best wishes,

From the Mods

My feet and hands got enough worse this month (I'm on Taxol three weeks out of four indefinitely, have been since January) that I requested a dose reduction. I have a week off chemo this week to see if it improves at all, then we'll start the reduced dose next week.

Onc told me to take B Vitamins, GABA, and maybe see my Chinese doctor for acupuncture. She also told me to try a bit of Gabapentin if I can, but I do not like the way it makes me feel. I may have to bite the bullet and take it anyway.

Thanks All .. saw Neurologist today - they were able to push up my appt 

She does not think any of my issues are Peripheral Neuropathy as I passed all neuropathy nerve tests. She spent an hour with me - first Dr. to just listen to everything.. Has now ordered a slew of tests - Full MRI with Contrast of Cervical, Thoracic and Lumbar Spine - thinks somewhere on my spinal cord there is compression. She also mentioned they should have used contrast on the previous Lumbar Spine MRI as all Cancer Patients should have contrast - can't see if there are any Mets without it - so wish she had not said that outloud... 

lulubee - sending so so many hugs to you and to everyone with Mets - hang in there 

Will let you know what they find 

Mary

MinusTwo, do report back to us! Always good to hear the perspectives of different practitioners.

My extra week off really did ease my symptoms. It gave me three weeks total between Taxol infusions, the most time off I've had since starting weekly Taxol in January. Man, did I ever enjoy the break!! I started back last week at a 20% dose reduction, and had #2 out of 3 in a row today. We'll see how it goes.

Still digging around for any and all tips for helping slow it down. Sure would like to hold it at bay as long as possible. My onc said my dose reduction will not *stop* the CIPN, it will only slow the progression of it. Eventually, she said, I will have to take another break to dial it back again.

gee feet have been problem since before chemo but this past weekend my hands were numb!

MinusTwo - Magnesium! I forgot I used to supplement with that to help me sleep. We have it here in the house, I'll start taking again today and see if it helps. Thanks for the idea. Tonic water was working well for me, until I realized it gave me tinitus. I've been trying to balance how much I use, so now I either have cramps or tinitus, but generally not at the same time!

proudtospin - all I can say is I'm sorry. when you say you take gabba, do you mean gabbapentin, or gabba ease type supplements?

count_it_all, I take Gaba Calm lozenges by Source Naturals. I don't know for sure, but I think the GABA may be easing the neuropathy symptoms a bit. Hard to tell since CIPN is progressive. Gaba Calm really helps me sleep, as well.

I have tried gapapentin and it just does not jive with my system. I just generally feel worse when I take it, and my stomach gets a little queasy.

I need to remember to take my B Complex because that is also thought to help.