Struth,
Please let us know how you go.
Chemo Induced Peripheral Neuropathy (CIPN)
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Re: Chemo Induced Peripheral Neuropathy (CIPN)
Thanks for writing Judy!
Sorry to hear you've got it too .. Breast cancer - the gift that keeps on giving!
I had docetaxil back in 2013 August/Sept and last year noticed some symptoms - but now it's gradually worsening. It's not getting better .. Anyway I'm seeing the neurologist again in a month so hopefully will know more then.
Sorry to hear you've got it too .. Breast cancer - the gift that keeps on giving!
I had docetaxil back in 2013 August/Sept and last year noticed some symptoms - but now it's gradually worsening. It's not getting better .. Anyway I'm seeing the neurologist again in a month so hopefully will know more then.
Mum to 4 girls aged 18, 16, twins aged 12.
Dx 11.2.13 ILC LB Stage 3A, Gr 2, 85mm ER/PR + HER2 -
Sx 27.2.13 left mast + AND, 5/15 nodes, expander
FEC-D, 25 rads, Oophorectomy/Salpingectomy/Cholecystectomy,
9.4.14 Right mast, LCIS, Bilateral Implants
Femara
Dx 11.2.13 ILC LB Stage 3A, Gr 2, 85mm ER/PR + HER2 -
Sx 27.2.13 left mast + AND, 5/15 nodes, expander
FEC-D, 25 rads, Oophorectomy/Salpingectomy/Cholecystectomy,
9.4.14 Right mast, LCIS, Bilateral Implants
Femara
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Re: Chemo Induced Peripheral Neuropathy (CIPN)
Hi Struth, I still have bad neuropathy four months after my last chemo (carbo/taxol.) My oncologist is keeping an eye on it but said that it will ease starting from the heel toward the toe if that makes sense. I told her I felt like I was walking on gravel and she laughed and said most people say walking on cushions, geez, they must uncomfortable cushions! I think mine is getting better but it is so gradual it's ridiculous. The tips of my fingers are still numb but I do find it easier to type now than I did a few months ago and I can hold a pen now. I still struggle with cutlery and if it is very thin it twists on me and I look like I am only learning how to use it.
I hope yours gets better soon but it does take a while, I was told 6-12 months. I too had to have a lesser dosage of the Taxol last time I had it because of the neuropathy.
I hope yours gets better soon but it does take a while, I was told 6-12 months. I too had to have a lesser dosage of the Taxol last time I had it because of the neuropathy.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.
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Chemo Induced Peripheral Neuropathy (CIPN)
So I've been doing ok on the whole.
Except for the fatigue, for the Femara side effects - the joint pain, tendinitis, insomnia, dry skin, sticky eyes, hot flushes, etc. but really that's just annoying, and manageable. I'm working about 8-10 hours a week. Managing with the kids, who are back at school etc.
But the last few months I've had worrying symptoms including dizziness, nausea, headache, pins and needles on the side of my face, shooting pains on the left side of my head, tinnitus, thirsty at night, but also ....... pins and needles in my feet, burning, pain in my feet/lower legs, dullness/numbness in the soles of my feet, tips of my fingers, and weakness in my legs, dropping things, clumsy, walking like a thunderbird! My physio says my ankle jerk reflexes are gone.
So I mention it to my GP, who says wait until your medical oncology appointment in February ...... So I wait, and Google lepto-meningial secondaries, spinal cord compression, etc... As you do!
My onc then orders a brain MRI, the chest, abdo, pelvic CT. which is clear from secondaries but I have two small clots in my brain (apparently) which may or may not be significant.
My GP refers me to a neurologist, who agrees, yes - your ankle jerks are absent and does heaps of checks and says it's likely CIPN. Which can affect sensory, motor and autonomic nerves, but also sometimes cranial nerves - like my vestibular nerve ..... (Hence the dizziness, nausea). And now I'm waiting a month for a nerve conduction study and have been put on Lyrica.
So now I'm on Femara, Procalm (Stemetil), Orudis, and Lyrica.
So my questions:
1. Has anyone else experienced CIPN ? 30-40% who have chemo can end up with it, and Taxotere , Docetaxil are strongly implicated.
I did have side effects during Docetaxil back in 2013 which resulted in them reducing the dose each time (thank goodness) - imagine what it might have done to my peripheral nerves if they hadn't!
2. What medications did you get put on?
I've read Cymbalta can help symptoms and my onc mentioned Cymbalta ... but the neurologist said Lyrica is the drug of choice..
3. Are your symptoms slowly progressing ?
I seemed to be OK up until Nov 2015 - and then these symptoms started quite suddenly.. It's been really weird. And it's scaring the sheet out of me to be honest. I'm only 48 and this picture of me does not fit, it's not part of the master plan, and it's definitely not fair. I don't want this 'new normal'!
I know people might say, hey the options are 'be dead' or 'put up with whatever side effects or complications result from treatment'. What options do we have after all? There are no other options. And decisions need to be made quickly. This is it! I don't remember being warned I could get peripheral neuropathy after chemo. But then, when being presented with the options at diagnosis - you hear the word 'cancer' and everything else is like noise.
And peripheral neuropathy is a gradual slippery debilitating slope.
And ... Did you know there's also Chemo Induced Diabetes?
Love to all
Except for the fatigue, for the Femara side effects - the joint pain, tendinitis, insomnia, dry skin, sticky eyes, hot flushes, etc. but really that's just annoying, and manageable. I'm working about 8-10 hours a week. Managing with the kids, who are back at school etc.
But the last few months I've had worrying symptoms including dizziness, nausea, headache, pins and needles on the side of my face, shooting pains on the left side of my head, tinnitus, thirsty at night, but also ....... pins and needles in my feet, burning, pain in my feet/lower legs, dullness/numbness in the soles of my feet, tips of my fingers, and weakness in my legs, dropping things, clumsy, walking like a thunderbird! My physio says my ankle jerk reflexes are gone.
So I mention it to my GP, who says wait until your medical oncology appointment in February ...... So I wait, and Google lepto-meningial secondaries, spinal cord compression, etc... As you do!
My onc then orders a brain MRI, the chest, abdo, pelvic CT. which is clear from secondaries but I have two small clots in my brain (apparently) which may or may not be significant.
My GP refers me to a neurologist, who agrees, yes - your ankle jerks are absent and does heaps of checks and says it's likely CIPN. Which can affect sensory, motor and autonomic nerves, but also sometimes cranial nerves - like my vestibular nerve ..... (Hence the dizziness, nausea). And now I'm waiting a month for a nerve conduction study and have been put on Lyrica.
So now I'm on Femara, Procalm (Stemetil), Orudis, and Lyrica.
So my questions:
1. Has anyone else experienced CIPN ? 30-40% who have chemo can end up with it, and Taxotere , Docetaxil are strongly implicated.
I did have side effects during Docetaxil back in 2013 which resulted in them reducing the dose each time (thank goodness) - imagine what it might have done to my peripheral nerves if they hadn't!
2. What medications did you get put on?
I've read Cymbalta can help symptoms and my onc mentioned Cymbalta ... but the neurologist said Lyrica is the drug of choice..
3. Are your symptoms slowly progressing ?
I seemed to be OK up until Nov 2015 - and then these symptoms started quite suddenly.. It's been really weird. And it's scaring the sheet out of me to be honest. I'm only 48 and this picture of me does not fit, it's not part of the master plan, and it's definitely not fair. I don't want this 'new normal'!
I know people might say, hey the options are 'be dead' or 'put up with whatever side effects or complications result from treatment'. What options do we have after all? There are no other options. And decisions need to be made quickly. This is it! I don't remember being warned I could get peripheral neuropathy after chemo. But then, when being presented with the options at diagnosis - you hear the word 'cancer' and everything else is like noise.
And peripheral neuropathy is a gradual slippery debilitating slope.
And ... Did you know there's also Chemo Induced Diabetes?
Love to all
Mum to 4 girls aged 18, 16, twins aged 12.
Dx 11.2.13 ILC LB Stage 3A, Gr 2, 85mm ER/PR + HER2 -
Sx 27.2.13 left mast + AND, 5/15 nodes, expander
FEC-D, 25 rads, Oophorectomy/Salpingectomy/Cholecystectomy,
9.4.14 Right mast, LCIS, Bilateral Implants
Femara
Dx 11.2.13 ILC LB Stage 3A, Gr 2, 85mm ER/PR + HER2 -
Sx 27.2.13 left mast + AND, 5/15 nodes, expander
FEC-D, 25 rads, Oophorectomy/Salpingectomy/Cholecystectomy,
9.4.14 Right mast, LCIS, Bilateral Implants
Femara
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