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KDaddy23
Dec 15, 2024, 1:20 PM
In twelve more days, it'll be my ten-month anniversary of undergoing my last chemo and radiation session and the word from my doctors is that there's no sign or indication of cancer. Which is a good thing but, man, the after-effects of the treatments are still with me, like, the neuropathy chemo gave me and made worse because I already had neuropathy on my right side and chemo made those sensations worse and the Lyrica I take every day only serves to take some of the edge off and I refuse to get back into taking powerful opiates because I got shit I need to be doing and I can't - and won't - do them while being stoned out of my mind.

I'm talking to the NP assigned by the outfit that my insurance deals with regarding my kidneys - which are still stable, by the way - and I'm trying to explain the neuropathy to her and while she's insisting that the main cause of peripheral neuropathy is diabetes... but with an A1C of 5.3, I'm not diabetic and I'm telling her that I got this shit on the right side because of the stroke I had way back in 2006 and got another dose of it via chemotherapy. I told her that neuropathy is one of the side-effects of one of the three drugs I was being treated with and while it's never a hard given that one can experience a side effect, I was hoping to avoid them and I did... except for the neuropathy and it's a motherfucker and a half to have both of my feet hurting/feeling numb/feeling cold when my feet aren't cold and, well, I just have to suck it up and hope that the chemo-induced neuropathy is going to eventually go away... but I have little faith that it will.

The dry mouth thing is making me fucking crazy. The recent CT scan of my head and neck reveal expected damage to my throat from the radiation treatments and, yeah, the dry mouth thing goes along with this and while it's been healing very damned slowly, you can imagine that it's not happening fast enough. At first, I had no sense of taste and there were only certain things I could taste which made trying to eat a problem because I couldn't taste it and my sense of smell was affected - those two things are a lot more connected than you might know or believe. At first, I couldn't taste anything salty but I could taste sweet; today, I can taste salt and some sweet stuff and my sense of smell is iffy.

Our new puppy took a major dump on his training pad not ten feet from where I was sitting and... I couldn't smell it. But that little fucker likes to lay under me and... farts and I mean the eye-watering, what crawled up his ass and died kind of farts. I've mentioned the taste/smell thing to my doctors, who just nod and say that, yeah, it's gonna be like that for a while but it'll get better... eventually. They tell me to sip water during the day to combat the dryness in my mouth and that works for as long as it take me to swallow the water; seconds later, my mouth is mad stupid dry and the OTC dry mouth items haven't been effective and it's been a bitch feeling like I have a loogie stuck in my throat and I can't get rid of it but sometimes, I can spit it out and... let's not talk about what it looks like, okay?

My immune system is still weakened but my lab work shows that it's slowly improving but my oncologist/hematologist doesn't seem to be all that worried about the values but says that the values are improving and... see you in six months.

So, that's all for now!

bob onit
Dec 15, 2024, 5:14 PM
Congratulations on the progress you're making in beating "C"

Tag200
Dec 15, 2024, 9:54 PM
Glad to hear it !!

stephmtl
Dec 16, 2024, 12:03 AM
Sounds like alot to be dealing with. Sorry to hear but glad for you that you re on the other side of the chemo and radio. I sincerely hope things keep improving. all the best

cornholejoe
Dec 16, 2024, 2:16 PM
yeah congrats so far so good

csreef
Dec 16, 2024, 6:14 PM
KDaddy

Glad to hear the good news.... I'll be sending you Positive Energy tonight!

A.

MAcpl69
Dec 16, 2024, 8:54 PM
Positive energy heading your way. Stay healthy

DD788Snipe
Dec 17, 2024, 3:11 AM
I hate to sound like the fucking scratched record but hang in there my friend. What the treatments did to me in 6 weeks it took almost 2 years to get back to my new normal. Your doing great KDaddy. Just remember what the alternative would have been. Not trying to steal your thunder but it's been 5 years this month since my last oral surgery to remove a tumor from my tongue along with the rest of the lymph nodes in my neck. I have my yearly check up next month with my ENT oncologist. So I'm once again cancer cured.

Have you tried the Walgreens foot pain relief cream yet? Twice a day keeps the neuropathy at bay.

By medical standards neither one of us should be here but we are and there's good reason for that. I haven't figured my purpose yet and hopefully you do my friend. Wishing you and yours a very Merry Christmas and a fantastic prosperous 2025 KDaddy. Stay well my friend.

Neonaught
Dec 17, 2024, 9:39 AM
The dry mouth thing hit me too since radiation damaged my main salivary gland. My doc gave me a drug called Evoxac that makes the other salivary glands work harder than usual and it worked well for me. Check with your doc about it. I only had to take it for a year or so. Good luck!

KDaddy23
Dec 17, 2024, 12:01 PM
@DD788Snipe, yeah, I tried it, and it didn't help. As far as not being here, well, um, I did die and as you know - I just didn't stay that way and I'm not complaining about that. My purpose hasn't changed, and I've had enough scares in my life that I've not left anything undone or unexperienced or whatever. The goals include staying cancer free, getting through these annoying after-effects, keep living to the fullest extent possible because I do know what happens and how it can happen very damned quickly.

Here's wishing you and yours a great holiday season and that 2025 will be a great year to come!

DD788Snipe
Dec 18, 2024, 2:16 AM
The dry mouth thing hit me too since radiation damaged my main salivary gland. My doc gave me a drug called Evoxac that makes the other salivary glands work harder than usual and it worked well for me. Check with your doc about it. I only had to take it for a year or so. Good luck!

Evoxac? I'll have to ask my oncologist about it next month. Waking up in the morning with the Sahara desert in my mouth is getting really old.

DD788Snipe
Dec 18, 2024, 2:22 AM
@DD788Snipe, yeah, I tried it, and it didn't help. As far as not being here, well, um, I did die and as you know - I just didn't stay that way and I'm not complaining about that. My purpose hasn't changed, and I've had enough scares in my life that I've not left anything undone or unexperienced or whatever. The goals include staying cancer free, getting through these annoying after-effects, keep living to the fullest extent possible because I do know what happens and how it can happen very damned quickly.

Here's wishing you and yours a great holiday season and that 2025 will be a great year to come!
Sorry it didn't work for you. I guess everyone is different.

KDaddy23
Dec 18, 2024, 11:22 AM
Sorry it didn't work for you. I guess everyone is different.

Don't sweat it, my friend. I'm used to dealing with it but I really do wish there was something they could do about it - including eliminating it as a side-effect in cancer medications. It kinda irks me at times because my doctors are like, "Sorry about that but it's better than having cancer, isn't it (and we can't do shit about it anyway)?" and they're right about that but just ignorant as to how this can fuck with someone's mind and not in good ways and that's because they don't have neuropathy.

I'm not trying to go back to wearing transdermal fentanyl patches...

DD788Snipe
Dec 19, 2024, 2:27 AM
Be careful with that and I agree. Today's generation of docs don't give a crap.

KDaddy23
Dec 19, 2024, 12:40 PM
Be careful with that and I agree. Today's generation of docs don't give a crap.

I told my doctor handling this that I was not going there with fentany because I need to function during the day, I do 99% of the driving, and it makes me horny as all the fuck get out and my old lady ain't giving it up...

DD788Snipe
Dec 25, 2024, 2:05 AM
I told my doctor handling this that I was not going there with fentany because I need to function during the day, I do 99% of the driving, and it makes me horny as all the fuck get out and my old lady ain't giving it up...
I'm living on 400mg of Gabapentin these days that just keeps mine at bay and does nothing for the ringing in my ears. That's brutal too.
Anyway, @KDaddy23 Merry Christmas my friend. Have a great holiday.

KDaddy23
Dec 25, 2024, 10:17 AM
I'm living on 400mg of Gabapentin these days that just keeps mine at bay and does nothing for the ringing in my ears. That's brutal too.
Anyway, @KDaddy23 Merry Christmas my friend. Have a great holiday.

It's not that cancer sucks but how much the after-effects of being treated can suck! @DD788Snipe, a very Merry Christmas to you and with smooth sailing and gentle breezes!

Bi-Rõnin
Dec 26, 2024, 7:30 AM
Good to hear things are going good. Neuropathy is a bitch.
I've got nerve damage thanks to neck/back problems. Docs always want to blame diabetes. Wasn't my diabetes that caused loss of strength in my left side. My left bicep is 11.5". Right, 13.25" bicep. Feet always cold or ache.
Doctors today seem to just want to push whatever they can make more money off of

KDaddy23
Dec 26, 2024, 11:12 AM
Good to hear things are going good. Neuropathy is a bitch.
I've got nerve damage thanks to neck/back problems. Docs always want to blame diabetes. Wasn't my diabetes that caused loss of strength in my left side. My left bicep is 11.5". Right, 13.25" bicep. Feet always cold or ache.
Doctors today seem to just want to push whatever they can make more money off of

My insurance provides coverage in the form of an outfit tasked to take care of my polycystic kidney disease (which is stable and non-life threatening at this point) and I was talking to yet another newly assigned NP there and having to repeat my current history - again - and we got to my neuropathy when she wanted to know my pain level. I'm telling here that back in 2006, I had a stroke that left me with right-side neuropathy but when I underwent chemotherapy for cancer, one of the meds that I can't remember the name of had a side effect of neuropathy so now, I have it on my left side and a double dose of it on my right side or, yeah, it gave my neuropathy... neuropathy.

She says, "You have this because of your diabetes!" and I'm looking at her like she's lost her fucking mind and ask her, "How can I have diabetes when my A1C is 5.3?" She gets a "stuck on stupid" look on her face and I did her a solid by repeating what I'd said about my neuropathy and that only a hard drug like fentanyl can even - and really - touch this cursed feeling; I can eat oxycodone like it's candy and at best, I'll have a nice nap somewhere along the line.

That NP didn't seem to understand - or want to understand - that my neuropathy is a result of both neurological and chemical nerve damage not contributed to diabetes.

I was telling my lady last night as we were settling in to watch some pre-bedtime TV that I hate that my feet feels like they're freezing cold... but they're not cold and that this constant feeling of achiness and or pain can't be compared to any other pain I've ever felt and I hate going to a doctor and they ask me what my pain level is and then, what the pain feels like and... how the fuck do you describe how this feels?

by~his~side
Jan 5, 2025, 1:00 PM
I'm sorry to hear about all that you have been through, K. Cancer and the toll it takes is no joke and only those that have been through it can truly relate.
If you aren't diabetic and blood sugar isn't an issue, try sucking on super sour candy. It will stimulate your salivary ducts and hopefully help with dry mouth.
Wishing you all the best going forward.

~D~

KDaddy23
Jan 5, 2025, 1:35 PM
I'm sorry to hear about all that you have been through, K. Cancer and the toll it takes is no joke and only those that have been through it can truly relate.
If you aren't diabetic and blood sugar isn't an issue, try sucking on super sour candy. It will stimulate your salivary ducts and hopefully help with dry mouth.
Wishing you all the best going forward.

~D~

I tried that - it just dried my mouth out even more! It's just one of those things that just plucks my next to last good nerve but what I "accidentally" discovered is that when I have my morning cup of coffee, my mouth stays moist for hours and I don't know why! Not looking a gift horse in its mouth (and it probably doesn't have dry mouth) but it's better than spending my day constantly rinsing my mouth out when it gets dry, dries my lips out, etc..

As far as the neuropathy goes, wearing compression socks "kinda" helps although I don't understand why it does but, again, I'm sure the gift horse doesn't have this issue and anything that takes some of the edge off of what neuropathy feels like works for me at this stage of things.

iamcontent
Jan 5, 2025, 2:18 PM
Wishing you all the best

hardcurve
Jan 5, 2025, 10:07 PM
Far f***ing out, man!

Neonaught
Jan 6, 2025, 9:21 AM
Biotene makes a mouth rinse for chronic dry mouth. Did you ask about the Evoxac?


I tried that - it just dried my mouth out even more! It's just one of those things that just plucks my next to last good nerve but what I "accidentally" discovered is that when I have my morning cup of coffee, my mouth stays moist for hours and I don't know why! Not looking a gift horse in its mouth (and it probably doesn't have dry mouth) but it's better than spending my day constantly rinsing my mouth out when it gets dry, dries my lips out, etc..

As far as the neuropathy goes, wearing compression socks "kinda" helps although I don't understand why it does but, again, I'm sure the gift horse doesn't have this issue and anything that takes some of the edge off of what neuropathy feels like works for me at this stage of things.

KDaddy23
Jan 6, 2025, 11:56 AM
Biotene makes a mouth rinse for chronic dry mouth. Did you ask about the Evoxac?

Haven't seen my doctors yet this year but it's on my list of questions to ask. I go through Biotene like it's water and with little relief. I'm kinda guessing that every time I say something to my ENT, oncologist/hematologist, and radiation oncologist doctors, about this nagging dry mouth, they just kinda shrug, recommend more Biotene but not Evoxac, which I'm sure they all know about - but aren't of a mind to prescribe it for some reason (the side effects are 'interesting') but, yeah, it's on my list.

DD788Snipe
Jan 9, 2025, 2:41 AM
https://biolinks.cc/secret
You must be new here????

KDaddy23
Jan 9, 2025, 1:04 PM
Must be a link no one should click on...

njfresh
Jan 9, 2025, 5:54 PM
Must be a link no one should click on...

It is. I reported the account.

DD788Snipe
Jan 26, 2025, 4:05 AM
Good to hear things are going good. Neuropathy is a bitch.
I've got nerve damage thanks to neck/back problems. Docs always want to blame diabetes. Wasn't my diabetes that caused loss of strength in my left side. My left bicep is 11.5". Right, 13.25" bicep. Feet always cold or ache.
Doctors today seem to just want to push whatever they can make more money off of

Have you seen a neurologist and if so have they ordered an MRI?

KDaddy23
Jan 26, 2025, 11:36 AM
Seeing a neurologist and having yet another expensive MRI is a waste of time and money. They already know that the stroke I had in 2006 gave me neuropathy on my right side and they know that the chemo they gave me... gave me more neuropathy. Yeah, my feet feel cold... when they're not cold. They ache, tingle, feel numb and nothing my palliative doctor has tried has even touched this annoying shit. It doesn't affect my walking or driving but, like I told the PD, it feels like someone's beating my feet non-stop and the only time I don't feel it is when I'm asleep - but it's the first thing I feel when I start to wake up.

The bad part is that they can't tell me whether the chemo-induce neuropathy is temporary but long-term or... it's gonna be permanent. I could deal with one foot feeling some kind of way but both feet? I just grin and bear it. I wear compression socks because, at least in my mind, it makes my feet feel "a little better" but that's a bit of a mindfuck on my part albeit one that does make it seem like the compression sock really help. And I suppose they would if I was diabetic and I'm not. This neuropathy isn't due to a lack of blood flow to my extremities - this is straight up nerve damage and of two different sources.

DD788Snipe
Jan 27, 2025, 10:07 PM
KDaddy my question was to #Bi-Rõnin.

DD788Snipe
Jan 31, 2025, 5:03 AM
I was in to see my ENT Oncologist this morning. Everything looks good according to him. After the old rubber hose up my nose routine. I asked for Evoxac scrip and he obliged so we will see. Thanks for the heads up @neonaught.

dowmass
Jan 31, 2025, 8:12 AM
I applaud you for your courage. I?ve had diabetic neuropathy for a while, and some days are terrible.
I use Alpha Lipoeic Acid and evening primrose oil. They reduced the numbness and pain quite a bit. I hope they work for you too. I know many doctors don?t believe in herbal or plant based medicines but in my experience they do work.

Neonaught
Jan 31, 2025, 9:51 AM
I was in to see my ENT Oncologist this morning. Everything looks good according to him. After the old rubber hose up my nose routine. I asked for Evoxac scrip and he obliged so we will see. Thanks for the heads up @neonaught.

Hope it works for you! I only had to take it for a few years.

KDaddy23
Jan 31, 2025, 12:45 PM
I was in to see my ENT Oncologist this morning. Everything looks good according to him. After the old rubber hose up my nose routine. I asked for Evoxac scrip and he obliged so we will see. Thanks for the heads up @neonaught.

Glad to hear everything is looking good for you! I have come to despise "the rubber hose up my nose" routine and the moment I see my ENT grab it, I can feel myself cringe. He's shoving that fucker in and saying, "Yeah, I know, I know..." and I know that he doesn't because he admitted to me that he's never had this done - he just knows how to do it. Good grief...