Temporary setbacks or forever symptoms?

On the neuropathy. I also take gabapentin. Prescribed 300mg 3 times a day but right now I only take it 2 times a day unless it's really buggin me. I tried to eliminate any meds I take if possible and gabapentin was one of them. I quit taking gabapentin a couple times but like you say the neuropathy drives ya mad so to speak so I have to take it at least once a day at the minimum.  My neuropathy is to the point that you can feel it extending from the hands up the forearms and from the feet up the calves in your legs. Since it is a problem with the nervous system and I read somewhere that the nerves control the activity of the bowel as far as it flexing and keeping things moving in the system that it causes erratic bowel movements for me. I could be wrong but since I recognized I have it pretty extensively after treatment I may go fairly regularly for a while and at times it can be anywhere from 4-7 days in between and then I go a good bit usually. I don't know if anyone else on this forum has trouble with neuropathy but it is my worst leftover from treatment. I don't see it talked about much on here so maybe most folks that had the platins in treatment aren't bothered by it.

Neuropathy links--

https://www.mskcc.org/blog/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment

https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

I also have dry mouth and sip something all day usually coffee and or in combination chew gum with xylitol as the main ingredient which is supposed to help dry mouth. I do at times use the xylimelts at night time for sleeping but am good most of the time. Except if I have a stuffy nose and wake up breathing through my mouth it is like a desert. At our support group one time a lady gave a talk and showed us products to help with mouthcare and she said if the ingredient list of an item lists xylitol as the first ingredient or closer to the top of the list it means there is a higher percentage of it in the product. She also had squigle toothpaste with fluoride there so I have been using that. I have been getting good checkups mostly.

I also have some tinnitus (ringing in the ears)

As far as radiation I don't think I have any side effects from it except I had problems with food getting stuck in my throat as it was probably shrunk and less flexible from the radiation and some pills I had trouble swallowing but I had gotten 4 dilations which pretty much took care of the problem but I still have to chew things well and be careful swallowing. And there is one pill I take which is rather large and chalky so I cut that one in half.

But I am extremely thankful that I can eat and could get off of a feeding tube as some on here are not so blessed.

I'll tell ya most people on here and our campus support group folks can attest to the fact that when any of us that have had any rather extensive cancer treatment is done almost nobody gets off scot-free we are left with some leftover problem or another or multiple problems for that matter.

God Bless-Take Care

wbcgaruss said:

ERomanoO I'm with ya

On the neuropathy. I also take gabapentin. Prescribed 300mg 3 times a day but right now I only take it 2 times a day unless it's really buggin me. I tried to eliminate any meds I take if possible and gabapentin was one of them. I quit taking gabapentin a couple times but like you say the neuropathy drives ya mad so to speak so I have to take it at least once a day at the minimum.  My neuropathy is to the point that you can feel it extending from the hands up the forearms and from the feet up the calves in your legs. Since it is a problem with the nervous system and I read somewhere that the nerves control the activity of the bowel as far as it flexing and keeping things moving in the system that it causes erratic bowel movements for me. I could be wrong but since I recognized I have it pretty extensively after treatment I may go fairly regularly for a while and at times it can be anywhere from 4-7 days in between and then I go a good bit usually. I don't know if anyone else on this forum has trouble with neuropathy but it is my worst leftover from treatment. I don't see it talked about much on here so maybe most folks that had the platins in treatment aren't bothered by it.

Neuropathy links--

https://www.mskcc.org/blog/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment

https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

 

I also have dry mouth and sip something all day usually coffee and or in combination chew gum with xylitol as the main ingredient which is supposed to help dry mouth. I do at times use the xylimelts at night time for sleeping but am good most of the time. Except if I have a stuffy nose and wake up breathing through my mouth it is like a desert. At our support group one time a lady gave a talk and showed us products to help with mouthcare and she said if the ingredient list of an item lists xylitol as the first ingredient or closer to the top of the list it means there is a higher percentage of it in the product. She also had squigle toothpaste with fluoride there so I have been using that. I have been getting good checkups mostly.

I also have some tinnitus (ringing in the ears)

As far as radiation I don't think I have any side effects from it except I had problems with food getting stuck in my throat as it was probably shrunk and less flexible from the radiation and some pills I had trouble swallowing but I had gotten 4 dilations which pretty much took care of the problem but I still have to chew things well and be careful swallowing. And there is one pill I take which is rather large and chalky so I cut that one in half.

But I am extremely thankful that I can eat and could get off of a feeding tube as some on here are not so blessed.

I'll tell ya most people on here and our campus support group folks can attest to the fact that when any of us that have had any rather extensive cancer treatment is done almost nobody gets off scot-free we are left with some leftover problem or another or multiple problems for that matter.

God Bless-Take Care

 

i have to share an idea my husband gave me when i was dealing with a large chalky (unpleasant tasting) pill a couple of years ago (not cancer related, but pill swallowing, just the same).  He suggested that i coat the pill lightly with butter - to "seal" it and make it easier to go down.  Honest to goodness, that WORKS!!  The pill doesn't start to dissolve or get stuck (causing panic!) - it just disappears.  Maybe it will work for you?  It's certainly a technique that i'll have mom use as she has more and more trouble swallowing anything.

Be well.

~ accordiongirl

My dry mouth can be truly arid, or not-so-bad and I haven't figured-out what causes it. It doesn't seem to be the weather (in my case).  But, you did not mention Biotene.  If you haven't tried it, I think maybe it would be a worthwhile experiment for you.  It comes in a paste (it works, but it's... unnatural feeling), and in a little spray (it works, but it's a little...medicinal), and in the mouth rinse.  I have tried multiple, multiple other things and I am *not* predicting you will have my same results, but Biotene rinse was the best compromise I could find.

I am fortunate.  I have almost no neuropathy, but that may be because they had to stop whacking me up with Cisplatin after the fifth infusion (my marrow crashed).

But here's what I really came to say:  I am more than two years out from my last treatment.  Things are still changing for the better.  I have just recently begun tasting a few tastes I had previously lost (no everything isn't back, but anything that comes back is a blessing).  I am gaining weight like it's going out of style (just recently after being underweight for a year and a half and being "about right" for six months).  The tinnitus I have had since an Aerosmith concert in about 1978... or maybe that was a bombing... and years of headphones way too loud, but the Cisplatin gave me tinnitus that nearly drove me out of my mind.  It passed.  Quickly.  Thank goodness.  I am back to enjoying Aerosmith in headphones!

You make it sound like you did breeze through!  That's awesome.   I wasn't so lucky and so every ability I get back and all those I retain are as precious as natural emeralds.

Still, I am REALLY sorry about the persistent neuropathy.  At least I didn't have THAT exquisite little inconvenience.  ...or at least not yet.

tbret said:

I know you know this

My dry mouth can be truly arid, or not-so-bad and I haven't figured-out what causes it. It doesn't seem to be the weather (in my case).  But, you did not mention Biotene.  If you haven't tried it, I think maybe it would be a worthwhile experiment for you.  It comes in a paste (it works, but it's... unnatural feeling), and in a little spray (it works, but it's a little...medicinal), and in the mouth rinse.  I have tried multiple, multiple other things and I am *not* predicting you will have my same results, but Biotene rinse was the best compromise I could find.

I am fortunate.  I have almost no neuropathy, but that may be because they had to stop whacking me up with Cisplatin after the fifth infusion (my marrow crashed).

 

But here's what I really came to say:  I am more than two years out from my last treatment.  Things are still changing for the better.  I have just recently begun tasting a few tastes I had previously lost (no everything isn't back, but anything that comes back is a blessing).  I am gaining weight like it's going out of style (just recently after being underweight for a year and a half and being "about right" for six months).  The tinnitus I have had since an Aerosmith concert in about 1978... or maybe that was a bombing... and years of headphones way too loud, but the Cisplatin gave me tinnitus that nearly drove me out of my mind.  It passed.  Quickly.  Thank goodness.  I am back to enjoying Aerosmith in headphones!

 

You make it sound like you did breeze through!  That's awesome.   I wasn't so lucky and so every ability I get back and all those I retain are as precious as natural emeralds.

 

Still, I am REALLY sorry about the persistent neuropathy.  At least I didn't have THAT exquisite little inconvenience.  ...or at least not yet.

 

The butter tip for pills is a good one. After my Tors surgery I purchased a small pill crusher on Amazon for 5 or 6 bucks that looked like a little pin wheel that worked great easy to load and turn with your hand could be an option for some. As far as the dry mouth I constantly drink something usually water but also use the Biotene espicially before going to bed and sometimes again during the night. 

I too suffered from neuropathy after treatment. So painful at night I'd have to get up and walk around. Then, sometimes during the day it would go from sharp pains to total numbness - to the point I'd have to sit down because I couldn't feel my leg.

Doctor wanted to put me on meds, but I've been very resistant to any medication (used regulated THC during treatment for pain and nausea to avoid taking any opioids).

Doctor said if I wouldn't take pills then I had to drastically increase my physical activity. I began cycling classes at my local gym (1 hour high intensity twice a day) and started standing up at my desk while working.

Fortunately, within 6 weeks all signs of neuropathy went away.

Dry mouth (only to the very back of my throat - radiation site) has been a reoccurring problem too. I find the ACT lozenges I get at Walmart are great (as long as I don't just chew them up). The condition comes and goes. Biggest issue is that I'm an open mouth breather when I sleep and that dries me out.

Good luck!

yes, I can empathize with your post. We never expected to get back to pre-diagnosis or pre-treatment levels, but we had made adjustments to accommodate for all the post chemo-radiation side effects: water bottle/spritzer always on hand, easier to swallow foods and meals for swallowing difficulties, binaural hearing aids for the hearing loss and to be truthful we were getting accustomed to the “new normal”. Then knock knock - 3 years post we have bilateral vocal cord paralysis and a neurogenic cough. Well damn! Evidently this is an extremely rare complication. During treatment one of the docs half jokingly and half exasperatingly called my husband a “complication magnet”. Bingo! I guess the best thing I can say is hang in there, try to find the silver lining, and keep searching for ways to accommodate and adapt.

on the dry mouth issue - xylitol has helped us some. There is also a product called Lubricity that is a spray you use 3x a day - non prescription, and there is a newer prescription spray made by 3M..we just got a sample from our dentist. Also some people have had good success with acupuncture, although that wasn’t our experience. Good luck with the dry mouth!

Barbaraek (caregiver to Boris)

ERomanO said:

Trismus

That's a new one on me.  What is it, exactly?  How can we prevent it?  I never saw that even mentioned in all the literature I've received from my docs. 

Is kind of like lockjaw. You can’t open your jaw very wide often it’s because of fibrosis from the radiation. Exercises help and we use that Therabite device. Our doc always measures how wide Boris can open his mouth - if you can’t open to eat and chew, you tend not to eat and get those important calories! For us we gave so many other side effects, this one didn’t seem too bad but our doc said we have to take it seriously. Some folks have very severe trismus, ours is not so bad. The dentist has noticed a difference since using the Therabite though and has had an easier time caring for all those teeth screwed up by radiation. 

I very much have a love-hate relationship with radiation. It killed the dang tumor, but it sure left us with a lot of residual problems.

Barbaraek

I too suffer from neuropathy,  I am 1 year NED.  Neuropathy is the worst.  I take gabapentin also and have tried the holistic route also, to no avail.  If I stop the gaba it does come back worse so I stay on it.  Dry mouth is bad but I do manage,  water bottle is a part of me  and gum,  taste is @ 50 % and swallowing is getting a little more difficult,  see my ENT  next month,  will probably disc options.  My ONC'S say side effects are what they are,  probably here to stay  but I also am here!!  There are good days and bad days but I will take them,  I have had one ocurrence but it was removed with no margins. Just glad to be here  really.  Glad to hear the treatment was a breeze for you,  not so on my part but so happy that we are all here on this site talking with one another.   Lets all hang in there.  Proud to be a survivor !!!

Hey ERO, congratulations on getting the neuropathy under control, edma minimalized, and getting your cloresterol level down by half; those are all excellent health improvements.  Now, let me be the first to tell you that after my BOT surgery in 2000, I carried small bottles of Mouthkote with me everywhere (like my AE card), and my mouth and sinus system manufactured industrial grade viscosity mucus.  My salivary glands had been fried by RAD treatment, was what I thought (see where I'm going with this).  In 2011, I was diagnosed with a tumor on the entrance to my trachea (thank you for the gift RADS), which necessitated that I have a total laryngectomy, and at the same time I got the bonus of getting a twofer of having my esophagus rebuilt during the surgery. The entrance of my esophagus had been fibrosed by the RADs, resulting in me being a PEG tube feeder for the next 11 years; my motto was that "if it flows, it goes" down my tube, e.g., blended food (Vitamix blenders totally rocked my world), coffee, spirits (yes, I kept my spirits up). The PEG tube didn't, by the way, slow down my active outdoor life from doing a half marathon to mountain hiking; and my true love, surfing.   Much to my very happy surprise, not long after my laryngectomy, and once more enjoying the wonders of actually swallowing and tasting my oh so delicious blended meals, my ENT, also surprised, informed me that my saliva glands had awakened and were once more pumping out saliva; yeeeee haaaaaw, ya gotta love it!  So, now you've read one report of the return of saliva, and yep, I do sometimes wake up with a bit of drool running down my cheek, about which I have noooo complaints. You just never know, I do hope that your saliva glands are only in a state of suspended animation, and will some day surprise you too.  Keep in mind that our unique journeys are rarely straight forward, but take various twists and turns, with sometimes steps backward to make for an improvement spring forward.  The keys to our surthriving is flexibility, adabtibility, creativity, and positive attitude.  I wish you the best in the journey of your continued recovery.

Patrick