#74012 05-05-2008 04:44 AM | Joined: Apr 2007 Posts: 20 Member | OP  Member
Joined: Apr 2007 Posts: 20 | We're almost a year out of treatment, thrilled the prognosis is good, and we're successfully if painfully adjusting to the "new normal". As side effects probably from the chemo(other from rad), Z has lost a significant amount of hearing, some balance, and has peripheral neuropathy - an annoying numbness and tingling in his fingers and toes. This is one of the most troubling side effects because it is a sort of constant reminder that things aren't "old normal". (pain + worry = suffering). He may adjust to it over time, and it may get better, and he can take ibuprophen when it's bad but....ick. Any body else out there with this?
~thalia
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Don't give up hope yet. I was 16 months post Tx and still feeling improvements which also seemed to be the biggest.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Hi, Thalia,
My husband is now about 6 months post-treatment and has had quite a few side effects including neuropathy. At first he couldn't feel his toes and he tripped easily (balance) and he was cold all the time. He is is much better now but I have heard that cisplatin causes this in some people (and another one of the chemos he had in induction chemo). What we did that might be helpful is we had our MO write scripts for physical and occupational therapy (the latter may be the most helpful for this). My husband ended up having fewer sessions than they expected and it really helped. I don't know if he learned to develop new strategies and adapt (for example, he couldn't button his shirts and now he can) or if he actually got a lot better but he is better. I was most concerned with his balance as that can affect exercise and as a result cause more balance problems and can lead to falls/tripping. Now he is back going to to the gym and I believe his physical and occupational therapy helped build him up to resume these activities.
Sophie
Last edited by Sophie H.; 05-06-2008 08:37 AM.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Apr 2007 Posts: 20 Member | | OP Member
Joined: Apr 2007 Posts: 20 | OH! wow. That makes sense. We'll check out getting some occupational therapy. We talked to (and even heard!) the hearing aid people today. Though they seem expensive, they're necessary. My sweets is a professor. It's all just another identity earthquake. Nothing fell down but it sure is shaky around here!
~thalia
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | What about insurance coverage on the hearing aids?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2007 Posts: 231 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2007 Posts: 231 | As a general rule insurance doesnt usually cover hearing aids. We have a vocational rehabilitation department here in South Carolina that paid for mine. If there is a voc rehab where you are then maybe you can check there. If not, check with the United Way.
Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I don't understand why insurance won't cover a hearing loss that's caused by a part of the Tx that they pay for? Doesn't make sense.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2007 Posts: 20 Member | | OP Member
Joined: Apr 2007 Posts: 20 | I couldn't agree more! Z's hearing is certainly worse from the chemo, which is a well documented side effect of these agents. In fact, I would recomend that anyone receiving the platinum chemos get their hearing tested before and after treatment just to be sure. Ah...but then the damage isn't covered, so why bother? Similarly the "extra" necessary dental cleanings and pre-treatment work wasn't "covered". I guess we just have to move forward with the pitance they give us. Less than a third of the cost to hear the world again. grrr...
~thalia
| | | | | Joined: Sep 2007 Posts: 20 Member | | Member
Joined: Sep 2007 Posts: 20 | I am a year out from treatment and suffer from extreme pain and numbness in my right hand and both my feet. I took Lycria which helped, but unfortunately the side effects were worse then the neuropathy. It made my fatigue worse, caused me to be drowsy and severely constipated. I too am beginning to realize that my hearing has been effected, but I know I'm too vain to wear hearing aides at 55, so why bother getting my hearing checked. I have been advised by 2 doctors that it may take 2 years to reach maximum recovery, including my problem with having thick saliva. I just hope I'm still around to find out if they are right. I was also advised that the neuoropathy could be permenant and so I need to stop my winning and suck it up. My ENT Surgeon has a great bedside manner...lol.
Steven
SCC Base of Tongue
Stage IV T2N2bM0
IMRTx32, Cisplatin x3
Diagnosed 1/25/07
Treatment Completed 4/20/07
Scans all good as of October,2011
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I tried neurontin, gabapentin and have a new lyrica bottle on the bathroom sink. I hated the first two because of the side effects and Steven, you are quickly discouraging me from cracking open the lyrica. Whining is free and you certainly earned the right. Sucking it up is optional but be forewarned sucking it up too long will cause the whining to be more intense when it does come out!  I hope your issues resolve soon! Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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