Neuropathy of the hands after treatment

Hello Shaymus and welcome to the CSN H&N discussion forum.

I would recommend you check out the Superthread at the top of the page there are loads of information in there with links and you will find it helpful.

There is the possibility of losing hearing to different extents or levels and also the possibility to get neuropathy to different extents or levels.

You see everyone is different and unique as per your body build, the location of your cancer and the extent of it, whether you are having surgery, chemo, and rads or all 3 or just chemo and rads.

I have some tinnitus out of it that is another side effect and I have the neuropathy.

From many cases I have read and heard of you could go through your treatment and it may give you neuropathy or not. You go through treatment and don't get it and the next guy gets it pretty bad and someone else has a mild case of it. Same with hearing it would be the same comparison. As far as I know, there is no way they can predict to what extent you will be affected or not at all.

Now you could be getting really strong treatment and your doctor could be pretty sure you will be affected but to what extent I don't know.

So what I think he is telling you ahead of time is like all the other medical warnings of drugs or treatments we are familiar with, there is a possibility that this will happen or you could get this after-effect from treatment.

I have neuropathy and my hearing is affected but if I played guitar I think I still could. After going through cancer treatment a lot of people on here had to adapt to a new normal and y

ou may have to adjust also. I have always said people who go through this treatment have some kind of side effects during treatment and then long-term. But it seems nobody gets away free. There are people on here who have almost nothing affecting them after treatment and some have some pretty severe effects and of course everywhere in between.

Our Motto On Here is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

Hi Just4jme,

Happy to help in any way I can. Going into this I found another friend from the Forum (MarieO) who I was able to private message as her husband had tonsil cancer in 2022. It helped us so much.

No he did not have a feeding tube. Our hospital did not do them prophylacticly, only if he’d drop too much weight (he lost a total of about 30 lbs and has already gained 20-25 back) at 9 weeks post treatment. Search my name on this board for his journey if you haven’t already. He noticed a swollen lymph gland on the left side of his neck the end of April. Got him into ENT May 30 then ultrasound 6/15, followed by CT and biopsy end of June. July 19 PET with no spread anywhere else just left side base of tongue (from the HPV + 16 virus) and the 2 small lymph nodes on same side (Stage I) so no surgery. He started treatment right after Labor Day. Finished 33 rads and 7 weekly Cisplatin 10/24. He will have labs and we see his Hematologist and Radiologist 1/8 and a PET or CT later in Feb to ensure he’s cancer free. He continues to do well. Feel free to private message me anytime. I figured if he had to do the treatment I would talk to his drs and force him to eat. He did a lot of eggs for protein, chicken Raamen noodles or soups, and Mac n cheese he could eat a whole box for dinner for the calories.

Your husband is blessed to have you. He will get through this. Stay positive and prayers sent your way!

Swoosh13

That's interesting, and I never heard of doing that before.

But If it works all places should do that with neuropathy-inducing chemo drugs.

Take Care, God Bless

Russ

I bought some of those off of Amazon but ended up using what the chemo nurses gave me instead. I didn't use them for the first transfusion and started to get a bit of neuropathy so the male nurse I had who was great suggested I start icing and once I did the neuropathy went away and I never had any. I had Paxitaxol as one of my chemo drugs and Cisplatin and they are notorious for causing neuropathy. Many women with breast cancer will cold cap their head also to avoid losing hair.

That is great! I really feel it saved me from getting neuropathy long term. I had Pacitaxol chemo which is known to cause neuropathy and I have none. I did have the tinnitus and still do but it did get much better once chemo ended.

When I was diagnosed in 2012, I was concerned as well as I've been a professional musician (guitar and vocals) for most of my career (full time and part time). I've been a SAM (solo acoustic musician) for the last 15 years or so and had many cush gigs in my area, performing regularly. I expressed my concern to my cancer team at Johns Hopkins and they did what they could to help preserve my voice. I had surgery to remove the cancerous nodes in my neck and 6 weeks chemo and rads. I did develop neuropathy in my feet but my hands were unaffected and while my voice was affected for a while, I worked hard, did the throat exercises (still do to this day due to swallowing issues) and such and was back performing by the fall of 2013, 6 months after treatment. Most of my gigs are 1.5 - 3 hours. I stuck to the shorter gigs for a while and was back full force by the end of 2013. My hearing was unaffected. While the pandemic put the kabash on performing, things started to open up last year and I'm back out there doing 3-4 gigs a month. I would like to do more but my day gig makes it challenging. Once I retire, I plan on supplementing my SS and pension with gigging.

Each person is different in how they respond to the treatment. I would express your concerns to your team.

I wish you the very best. You got this!

Positive thoughts