Well, thank you all
for the input on Taxotere motor neuropathy.

Our doctors are not
all quacks even though it seems so. They wanted to keep her on Taxotere,
even with side effects, because she has specific targeted therapy. Before we
went in for chemo, we had extensive in vitro testing done. Chemo sensitivity
testing on primary tumor tissue and blood sample cultures showed marked cell
death when Xeloda, Cyclophosphamide, and Abraxane was used. Abraxane was not an
option for us, since not all European countries have it on their approval
lists, and wohoop-di-do, ours in one of those. Paclitaxel had lower effects,
but Taxotere was right alongside Abraxane, and was the best option. Since we
finished 4 circles of Xeloda + Cyclophosphamide, Taxotere was the next get go,
thus they don’t want to give up on it.

In other news: We are
boarding the depression train. We went to a neurologist, and he said there
could be improvement with physical therapy. Still, we also had to go in for a
brain scan to rule out mets that could up the horrible neurological
consequence. Good news? No mets to brain or compression of the spinal cord! Cue
smiles?Not really.

Mets to posterior rib
ends, both sides, Th8 to Th10. It’s like they are ganging up on the spinal
discs just waiting to pounce. Considering the fact that we are, currently
dealing with motor neuropathy and a wheelchair, the idea of a future spinal
compression is just so depressing. I almost slapped the rheumatologists who
said – ‘Eh, if it spreads, there won’t be much of a difference, she just won’t
have sphincter control’. I’m not prone to cursing, but while he was stating
this I thought – fu#k you, mister. F you.

Do I even need to mention how devastated I am about
the mets?

Pip, I had digestive issues after chemo and eventually found that going off of gluten solved mine so thankfully turned out not to be from neuropathy. I do know someone that had severe digestive issues after chemo for lymphoma. My community oncologist says that since my neuropathy has continued to get worse since chemo seven years ago (but mine was for lymphoma) that it's not due to the chemo. I think that's a load of crap but now my pcp and I are considering other possible causes.

I had something strange happen last evening. I don't get the burning feet thing too often. I usually have the frozen toes and feel weird lumps under my feet, among other things. Well last night the tops of my toes were burning and red and the bottoms were cold...too strange. Anybody else?

I had one dose of chemo (taken off treatment due to diverticulitis) and have recently (last month) developed neuropathy. I have a hard time walking with the pain and the burning. My hands also ache.  Since my one dose was last November I am sure my oncologist will say it is not from chemo but I am sure it would have developed before chemo if that was the case. What are the odds?  I am going to be seeing a neurologist and hope that this is not permanent.

All the symptoms get difficult to track with our ages (for those of us over 50) and histories.  New ones are always alarming though.  

Wrenn - What did your neurologist say?  Thinking of you.

Interesting about the digestive issues.  Hope you all are finding some relief.

I am happy to say my scans were good.  Almost 4 years NED.  

Neuropathy hasn't been bad so far this week other than the daily pricks to check my sugar.  Last nights felt like it went in the bone.  May yet ask if I can test on my arm.

Have you tried Lyrica?

I tried neurontin and amytripiline and they did nothing for me. Lyrica really helps with the pain but not numbness. I also had a MD who did acupuncture and it helped the circulation. It took a while to get the Lyrica up to speed but it works for me.

Eli - I'm where you are with the numbness or frozen feeling toes & balls of of my feet.  I think (not sure) that my ankles & moving up my calves are a little less numb.  I'm nervous trying to cut my toenails.  My fingers still alternate between tingling & burning and numb, and my hands are always freezing.  I can zip up my pants now but can't open a bottle of water.  It's very difficult to pick up coins from a flat surface, and (maybe TMI) I hate that I can't wipe the 'sleepers' out of the corner of my eyes or pick my nose. (I know - yuck)  I'm 7 months post taxotere & carboplatin and 3 months past cytoxan & adriamycin.  AND I finish my last radiation tx tomorrow.  

I plan to get back to the PT once the rads burns are healed.   It seems the point of PT was to teach me to navigate safely w/numb feet, and I pretty much figured that out - keep your knees bent and slow way down.  I plan to see the neurologist again at one year PFC.  She said there are tests they can do but I felt it was too soon since I was still in active treatment.  

Agree - Sometimes I think my hands are a little better but some days are worse than others & I can't find a trigger.  Hindsight I too wish I'd cancelled the last taxotere/carbo infusion.  I was complaining about neuropathy and MO gave me the choice for #5 & #6, but since I'm ER/PR neg he strongly recommended I should go ahead w/the chemo.  Even at that, the tumors only shrank in 1/2 before surgery so I probably made a good decision, but...

If I'm looking at the glass 1/2 empty, I'm guessing this will be life long.  My neurologist said there will probably be some improvement but it would never get back to where I was before.  So that's my 1/2 full glass.  There's that darned new normal again. 

Yes, Eli - I agree once more.  I hope I can really ride the mules down into the Grand Canyon, and hike the mountains & the seashore, and thread a needle - and I sure haven't given up yet.  We'll just keep pushing!!!

CCN Cancer Survivorship Guidelines Expanded to Address Two Common ConditionsByCaroline Helwick
Posted: 3/18/2014 2:38:26 PM
Last Updated: 3/18/2014 2:38:26 PM
ADVERTISEMENTKey Points:The NCCN Survivorship Guidelines include a new section on cancer-associated cognitive impairment and an expanded adult cancer pain section that more fully addresses chemotherapy-induced peripheral neuropathy.Current management strategies for cognitive impairment are patient-centered, supportive, and nonspecific.Treatment for peripheral neuropathy includes antidepressants and anticonvulsants, with low-dose opioids and topical agents used as intervention, if necessary.TheNational Comprehensive Cancer Network(NCCN) has expanded its Survivorship Guidelines to include a section on cancer-associated cognitive impairment, and to include chemotherapy-induced peripheral neuropathy as a component of the Adult Cancer Pain section.The inaugural guidelines for cognitive impairment were presented at theNCCN 19th Annual ConferencebyElizabeth Kvale, MD, of the University of Alabama at Birmingham Comprehensive Cancer Center, whileSusan G. Urba, MD, of the University of Michigan Comprehensive Cancer Center, described the new section on peripheral neuropathy.Dr. Kvale toldThe ASCO Post, “Chemotherapy-associated cognitive impairment is a common experience for cancer survivors and it has been underrecognized. The guidelines are an important validation of our patients’ symptomatic experience, and they will allow clinicians to take a structured approach to evaluating it and to supporting patients who have this problem.”Cognitive ImpairmentThe NCCN Cognitive Function Guideline for Cancer Survivors acknowledges that although patient-reported cognitive dysfunction is associated with cancer treatment and is modestly correlated with testing, there is limited evidence to guide management, especially for cancers other than those of the breast, Dr. Kvale said.Neuropsychogical testing can help “sort out” the condition, she noted, especially in elderly patients who may have dementia. Neuroimaging, on the other hand, is generally not helpful, but an expanding evidence-base is now suggesting that structural and functional changes underlie the experience, she added.Patients who present with symptoms of cognitive impairment should also be screened for potentially reversible contributing factors, especially depression. Currently, there is no effective brief screening tool, and available instruments lack adequate sensitivity for subtle declines in cognitive performance.“Current management strategies are patient-centered, supportive, and nonspecific,” Dr. Kvale said. “Reassurance and watchful waiting are not inappropriate, because many issues resolve on their own.”Chemotherapy-Induced Peripheral NeuropathyPerhaps, at this point in time, more can be offered to the 20% to 40% of patients suffering from peripheral neuropathy. The development of neuropathy is a key reason for premature discontinuation of treatment, and for a sizable proportion of patients neuropathic pain persists indefinitely.“Peripheral neuropathy has been part of the cancer pain guidelines for years, but we are now focusing more on the long-term cancer survivor, who can have late effects of treatment,” Dr. Urba said.The first line of treatment is antidepressants (especially duloxetine) and anticonvulsants (gabapentin and pregabalin), which are often effective on their own but can be combined with opioids when pain is more resistant, Dr. Urba said.If opioids are necessary, the lowest dose should be used, and for long-term use clinicians may want to consider establishing a pain treatment agreement, she said. Having patients on opioids can be “tricky,” she indicated. “Clinicians don’t worry about a patient being on gabapentin for years, but they can be uncomfortable prescribing opioids long-term.”Other interventions recommended by the NCCN include topical agents (usually best when combined with an opioid, antidepressant, and/or anticonvulsant). These include the 5% lidocaine patch, diclofenac gel 1%, and corticosteroids in acute crises.The psychosocial support of patients left with peripheral neuropathy is important, Dr. Urba emphasized. “They may be on lifelong medication, and they should learn coping skills,” she said. Because of the multidimensional nature of treatment-induced neuropathy, she recommended a “team effort” in order to truly impact this symptom.

Thanks Lisa for posting the article.  My neuropathy is unusual in that it is in my forehead which has tingled and itched since my last dose of chemo, almost 5 years ago.  It actually started during the infusion when my forehead turned bright red and became painful.   I generally try to ignore it but there are days when it is not possible.  I am glad that they finally are acknowledging this side effect of chemo.

Just slathered my feet with Petroleum Jelly and rubbing them together,,,Wow that feels good!  let me know if you try it and you like it!

I was wondering the same thing Minus two....a couple of my toe nails look like they may fall off.  Also very nervous about getting a pedicure???? 

I can relate to that one.  I finished my chemo in Feb. and in July I started loosing my toenails.  I had already lost my finger nails and they had grown back.  I don't know why it took so long for the toe nails.  I wear crocs year round.  When it is extremely cold I have worn some sneakers but they just hurt my feet.  I have been lucky and only had one problem and that was a splinter.  I think how I got it was at a playground that used that bark stuff, and a piece got in my shoe through the wholes.  Thanks to the neuropathy I never felt it till it got so infected that my toe started throbbing.  That is the scary part of neuropathy so now I check my toes every week.