Vent about Permanent Neuropathy
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AvMom,
I notice you had a diagnosis of Triple Negative IDC, I did too. Chemotherapy was the only thing offered for us, neuropathy was downplayed as a side-effect. As scared as I was, I would probably have done the chemo anyway had I known that it would be permanent. You have a complicated diagnosis, a different type of tumor in each breast? And then another tumor found later?
My feet are also always cold. The funny thing is, they don't feel cold, I don't know they are cold until something warm touches them. Being tired is the enemy, it means my legs feel like heavy weights that I am dragging around. I was also very active before all this started, always on the go and usually at a dead run. It is a big adjustment to have to ration my activities and know that I can only accomplish a fraction of what I did before in a day. I don't take any of the neuropathy drugs, I was told they would help the burning and tingling but they would not help the numbness/weakness, so I turned them down.
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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!
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Bosom, I will certainly share any news on this treatment. I was surprised that, when I started these treatments and mentioned it to a few people I knew, several of them said they had received ultrasound treatment for a variety of things. One person had ultrasound as part of his treatment for tennis elbow; another had ultrasound when he tore his rotator cuff.
I live in Canada, so I know almost nothing about insured services in the US. Up here, there is a bitof a hodgepodge of what is a fully covered medical service, and what you either have to pay out of pocket for, or buy insurance. For example, when I did chemo, all chemotherapy services directly related to infusions, including blood work and treatments administered "in the chair" are a fully covered, but the Neulasta injection the following day is not, and you need an individual coverage plan for that, or pay cash. Generally, prescription drugs are something not covered by our provincial health plan, so it is pretty common to have insurance, and many employers offer it as an employment benefit.
These ultrasound treatments are at my oncology rehabilitation clinic, so they are fully covered, as are the lymphedema services I receive there. Maybe they would be acovered service if your insurance included rehab services?
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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
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Hi all
I only lurk here occasionally. I have CIPN and PN from diabetes. To me they are different feelings.
Saw this in the current issue of Cure magazine. It's a free subscription or you can get it at your MOs office.
Thought this may help some of you
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That mindset is tough to change, isn't it, BosomBlues? Sigh...
I've seen that magazine, SpookiesMom. Thanks for sharing the info.
Lyn
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I'm new here. I just wanted to thank you for this thread. I haven't yet read all 76 pages, but for the first time in a long time I feel less alone. I've struggled with neuropathy since my first chemo over two years ago. It is so severe that most of the time I can't feel the ground underneath my feet. I'm on almost the max dose of Neurontin, but the best I get from it is I can feel the ground after the second dose of the day. It's in my hands as well, but less severe, and I feel like the tools I have to compensate for that, like voice recognition software. But I have still lost so much, like the intricate thread crochet that was once my favorite hobby. I used to be a runner and now I can barely walk. My oncologist says this might be permanent.
I feel like I'm in mourning all over again for a life that will never be be even close to my old normal. None of the people I know from the infusion center or anywhere else has had this constant severe neuropathy. I'm so sorry any of you are experiencing this, but thank you so much for this thread because I feel a little less lonely at the moment because of the generosity of all of you in sharing your experiences.
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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
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Hello All,
So glad I found this thread & still reading thru all of your posts.. my last Taxol treatment was January 2016 and I suffered Peripheral Neuropathy throughout the 12 treatments to where my MO kept adjusting my dose ... fast forward to maybe 6 months ago foot pain came on severely and I thought it was from the Hormone meds (Arimidex) .. then leg weakness to where I started to struggle walking up stairs and getting up from chairs. Went between both my Oncologist & primary doctors- multiple scans & tests - today Bone & Joint Pain Specialist said all things point to Peripheral Neuropathy from the chemo & is sending me now to a Neurologist to do an EMG!! I am blown away that the chemo induced Neuropathy can get worse to severe now almost 2 years out... I take Gabapentin so not sure if it would be worse if I didn't take it..
Anyway I am thankful you all have shared your experiences and that I have found you - sending hugs
Mary
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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.
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i take gaba for my nueròpathy, it helps some as i can tell the dif if i skip my dose
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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
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Well I finally called to make a follow up appointment with my neuroloist today. Hmmm - only 3-4 years later... I'm fortunate that I don't have the debilitating pain that some of you suffer. I do have a balance problem walking on dead feet, and most socks & shoes are quite uncomfortable. Occasionally the numbness still creeps up my calves. Also occasionally the ends of my fingers tingle & get numb. I really don't think there's much she can do, but she did say to come back and see her 'down the road'. It will be interesting to hear if there is any new information in the medical pipeline on CIPN.
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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.
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All - first time to this group, but going a little stir crazy not being able to sleep. frustrating! it helps to read some of your posts and feel less alone. I've had difficulties sleeping ever since chemo - hot flashes, leg cramps, tinitus, etc. Then about a year ago - 2 years out from treatment - tingling that has become pain in my feet, and now recently in my fingers. I would pay SO much for a solid night of sleep.
Mary - Happy to hear maybe NOT neuropathy for you? Share with us how your tests come out. I'm curious as I haven't met with a neurologist yet, just a foot dr, who says neuropathy. But I do know I have degenerative disc issues, and wonder if compressed disc would be more treatable? Do you have pain in your hands too, or feet only?
Well, will read a bit more and head back to bed. Used to be such a sweeter time of day, didn't it??
Mary
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gee feet have been problem since before chemo but this past weekend my hands were numb!
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count - after treatment my PCP put my on Magnesium supplements - 250mg per day. It has stopped the leg cramps I was getting at night.
proud - so sorry to hear numbing hands. It was awful when I couldn't even do up a zipper on my pants.
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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?
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gabbapentin, i take it every day, i an feel the dif if i forget, but it doesnt completely kill pain, although it is more numbness and tingling
Went to foot doc yesterday, new guy for me but i like him. Seems what i that was a callous on my foot was really a cyst
So,dr me was wrong
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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.
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Hi ladies - joining you with some left foot neuropathy originally from Taxoterrible in 2013, but now rebounding with weekly Abraxane. I am taking gabapentin and B6/12 daily, what else works for you? Yesterday post infusion I had some shakiness in left hand that spooked me, but I was up all night from decadron. Walking fine so far, but ball of foot is tingling. Thoughts?
(()) Claire
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I'm trying acupuncture to help with my neuropathy in my feet. My MD does it in addition to her regular medical practice. I think it's getting better though slowly. She's reminded that it came on over time and I've had it over to a year since my initial taxol treatment so I need to allow time to get better. Neuropathy is one thing that scares me about any future chemotherapy, don't want it to get worse.0
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I have also been encouraged by my oncologist to try acupuncture. It definitely helped me get through the healing process post-mastectomy and reconstruction surgeries ten years ago, so I think I should give it a try for this. Please keep us all posted on how it goes for you, Liwi.
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As promised - here's my report after the appointment with my neurologist last week. I am 3 years out from the last chemo & rads. I have three finger tips that are sometimes numb, but hands have mostly resolved. My feet however are still numb/dead. Occasionally it feels like the numbness runs up my calves.
The doc confirmed that yes indeedy, there is no feeling in 90% of my feet. Fortunately I don't have the shooting pain. Occasional burning, but not bad enough that I'd want to take pills. She also confirmed that there really isn't anything she can offer except meds for pain - which I don't need or want. She mentioned some people use lidocane patches on the soles of their feet. I asked about accupuncture and she said "it can't hurt if you want to try". She did recommend trekking poles for walking stability.
Someone mentioned they thought their neuropathy was getting worse - maybe on this thread. She said if it was truly caused by toxicity (CIPN) it would not get continue to get worse unless there was another underlying cause medical cause. Apparently there are other reasons besides diabetes but I didn't ask any details. Of course that answer was based on 3 years post all treatment so my neuropathy has stabilized and there is no progression. (but there are bad days... different story)
The thing I hate the most is the lack of balance. I can not stand on one foot - so feet never get thoroughly soaped in the shower. I can not close my eyes and feel stable even on both feet. I have to be leaning on the shower wall when I wash & rinse my hair. Sometimes it's difficult to get up from a chair & keep my balance if there are no arms on the chair. I broke the 3rd toe a couple of weeks ago in a rush to answer the phone w/o shoes on. The tip has no feeling, but boy I'm sure hobbling about from the pain at the junction between toe & foot.
So that's it. Until & unless there is some new miracle, I'm where I'll be until & unless I get arthritis or gout. (oh happy days) But I'm still NED. Since I'm ER/PR negative, but HER2+, there weren't a lot of options. I'd like to think I'd skip the last two taxotere & carboplatin infusions after my recurrence, but I'd probably do the same thing again - since even with them I didn't have pCR.
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Checking in here...
Hey Minus~ I am sorry to hear about the numbness. Also hearing your gratitude about NED! My neuropathy worsened considerably months after chemo...I think that the joint pain in my ankles from Tamoxifen makes it feel much worse.
My PT has me doing balance exercises daily. Have you tried those?
Lulu~I am doing acupuncture and I think it is having a positive effect.
Liwi~ It makes sense that we need to allow time as it has taken time to develop.
My naturopath has me taking Glutathione, a powerful antioxidant. ( Neuropathy is caused by oxidative stress) I think this supplement is helping!!!
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my pt had doing balance things,they work and i need to do them again
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I just posted on the other neuropathy site. My bare bones tablet will not cut and paste and I do not want to rewrite it here. yes, it would be nice if the two forums could be combined. I see many of us visit both sites and it is mostly redundant.
I mostly say the same thing over and over, and while venting usually is not helpful and only makes me feel worse, somehow sharing here I find very therapeutic. Neuropathy is not something I ever mention to anyone as I feel it comes across as hypochondria so I thank you all for your posts and sharing of your thoughts and treatments.
I DO feel somewhat angry that chemo was recommended for stage 1A dx and yet none of my doctors mentioned it as a possible side effect, nor the permanent effects on the texture and quality of my hair. I asked the right questions but only told that the only SE would be I would lose my hair but it would grow back. My hair never grew back the same, it is stringy, thin and limp, and I still suffer from the crippling neuropathy. Doctors and nurses even mocked me when I wanted to ice my fingers and feet and said neuropathy is extremely rare and should it happen it is very temporary and icing is just a myth so stay off the internet.
I was slammed particularly hard by this, perhaps because I was going thru a particularly bad time prior to my DX and I had extremely poor nourishment, in fact I was emaciated. I had periods of heavy drinking and a bad back which may have damaged my nerves so I may well have been more predisposed to the harmful effects of the chemo, but doctors were well aware of my medical history and perhaps that should have been taken into consideration before recommending chemo to a stage 1A patient. Additionally because of the blockers my glucose levels are now high and I am prediabetic which could also explain the progression these last few years. Having said all that I am very happy to share that over this last month my neuropathy has greatly improved by perhaps 25%. The only thing I can attribute this to is perhaps the reduction of my stress levels. Maybe this is just a fluke but I hope it continues. I am more hopeful than I have been in a very long time.
Hang in there my friends. Perhaps medical science may find a cure for us yet but in the meantime try to keep your mind off our aliment and do the best we can to give our bodies the tools to heal.
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Not Broken - glad to hear you have some improvement. When you get a chance, please do go to my profile & fill out your personal information. It is always helpful for us to put your improvement in context with your treatment - such as what chemo you had, did you have radiation, or surgery, when treatment ended, are you HER2+ etc.
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I had my initial evaluation for post-chemo PT last week and failed all three balance tests, landing in the red zone. I'm trying to cram in as many appointments as possible, but the rehab facility is heavily booked as others are also trying to maximize their insurance benefits before calendar year end. I'm very concerned about how these balance issues will affect my ability to teach dog obedience classes. As my stance and gait have changed with the balance issues, I'm having pain in my feet, not nerve pain as many of you have experienced , but rather feeling like the bones have collapsed making me more flat-footed. With the physical therapy, lymphedema treatment, mammogram, breast cancer surgeon routine follow-up plus trying to get in for a spinal injection for my herniated disc, I don't see how I can work in a podiatrist appointment, if there is even an available opening. At the same time, I'm grateful that my most recent tumor markers didn't reveal anything scary.
Lyn
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VLH, with the neuropathy many of us walk funny and instead of heel toe we walk flat footed and duck like. It is a classic symptom. I wonder if that could be the cause of your pain in that you are walking differently and putting pressure on different areas. Just a thought that it is neuropathy related.
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