How Throat Cancer Can Affect How You Taste Food

In this video I discuss my loss of taste during and after my throat cancer treatment. Throat cancer or head and neck cancer treatments can lead to a variety of complications and one of those is the "loss of taste" Experts can only agree that it does occur and that it can last from 1-2 months to 8-12 months, to as much as permanently being lost.

[@bainebikerx3170]

I finished my radiation treatment on the 31/12/21 and still have no taste atall. I am still living on high calorific drinks. I also have dry mouth and easily choke on anything I try to eat. I also have no appetite and I haven't eaten a meal for 14 months. Still happy to be here though ☺️

[@theregularguy141]

Hi Baine, It does take some time to start getting it all back. Everyone's body responds differently. I was mixing high calorie drinks with soft foods for quite sometime before I was able to fully eat. And spicy foods? Forget it... I used to pop Jalapeños on sandwiches and sometimes eat them whole. Now?? NO WAY! It's amazing how fats and how slow we heal. I truly hope you get at least some taste back. Mine is still messed up, it is very strange. Eating solids will come back, it will just take some time. Keep us updated on your progress! Lee

[@bainebikerx3170]

@Cancer and The Regular Guy Thanks Lee much appreciated 👍

[@donnabarnes540]

I’m 6 months post treatment and doing quite well with eating . Have to have a lot of sauce though . No meat , bread and that sort of stuff . Lots of veg and mashed pots , fruit smoothies and supplement drinks . Dry mouth and hardly any taste . Like you , I’m just glad to be here and I’m glad you are too ❤

[@bainebikerx3170]

@Donna Thank you Donna,glad you're doing well. I am still battling on and enjoying life. Still can't taste anything but count my blessings. Best wishes Bob 😊

[@donnabarnes540]

@@bainebikerx3170 🥰❤️🥰

[@KeithBills]

Keep us updated, I am about 1 year behind you. Got my PEG out a month or so ago and eating solid foods now, but taste is bad/plain and I get choked often (and small bites wiht lots of chewing, everything you said in video #5). If I get my taste back in 8-12 months like you did, at least I have something to look forward to.

[@theregularguy141]

Hey Keith! Actually you have lot's to look forward to. I'll admit that getting my taste back was pretty awesome, right up until I got a nasty head cold and lost it! Again! BUT, it is back now. It did take longer than anticipated and I admit, I did almost give up getting my taste back. My biggest hang up now is the dry throat/mouth and sometimes I get some food hung up trying to swallow too much at a time. Keep us informed of your progress. I just looked at your YT page channel. Dirt track racing? Now that's extreme! You mention Gaffney SC, I used to go through Gaffney all the time to see relatives in Greenville SC. Good luck on the track and with your recovery! Lee

[@KeithBills]

@@theregularguy141 in the last month my throat has swollen up even tighter it seems and it's very painful to swallow now, so instead of continuing to get better, it got worse over the last month, I have an appointment with my ENT doc Wednesday and hopefully he can tell me why it got worse and some way to remedy it. I know it's not the tumor blocking my throat this time, becasue I just got scanned and it's all gone, so that puts my mind at ease somewhat. Keep us updated and I'll do the same. I actually raced again in early November for only the second time since my treatments and I won the feature race that night, kinda like a storybook tale. But I was plum wore out at the end of the race because my energy level is so low and it's still low, becasue I keeep losing weight because it's so tough to eat (lost 70 lbs now total)... but I'll keep digging.

[@hylah16]

@@KeithBillshow are you now? Did they figure out what happened?

[@joansidor5191]

You give me hope. Radiation ended 9 months ago and my taste buds really haven't improved . Being patient and glad to be alive. Joan

[@theregularguy141]

Hi Joan, I did get about 80% of my taste back, but it took almost a full year to get to that point. I was told 6-8 months... But I really think it was a full year before I think I had gotten back all I was going to get. BTW, thank you so much for the kind words, that is the whole purpose of the videos, to give out a bit of hope. Lee

[@AmberMichealsCholeNicole-cj7sy]

Did you have leukoplakia

[@dalewyatt9405]

I’m 8 weeks post radiation. Taste is kinda coming back dry mouth is terrible. My facial hair is terrible. My main concern is taste. From 210 to 159 take a fat boys taste away and you take his life in a sense. Very fortunate to be where I am. My dr says he’s never seen anyone take the treatments as well as me. Thank the Lord

[@theregularguy141]

Hey Dale, My beard looked like the coat of a mangy dog after treatment. It was almost a full year before my beard started to recover. As a matter of fact I still only have a streak of hair on my neck just to the right of my esophagus. The rest of neck is clean as the day i was born... Weird. My taste came back to about 75-80%, so some things taste weird or not at all. The dry mouth seems to be what most of us have going on and according to my oncologist, that's an unfortunate side effect. Mine did improve through about 8 months to where I estimate I only have about 50% of my salivary glands back. But it all pales in comparison to the alternative. We are still here! Lee

[@AmberMichealsCholeNicole-cj7sy]

Did you have leukoplakia

[@johnpettit3700]

My problem post treatment {5 Months} is scar tissue at the base of the tongue stopping me swallowing properly. No saliva glands is major. But you know what, I'm alive which is always a good option.

[@theregularguy141]

Being alive is much better than the alternative for sure! Will physical therapy help you resolve the scar tissue problem?

[@markgreenwood6630]

Hey pal me again. I couldn’t eat for 2 years. Just protein drinks. I dropped from 265lbs to 120lbs. I used to body build so I was a big guy, thank God. I would have probably have not made it. Taste is not a problem but salivary glands never repaired for me. Eating is now a necessity with water every mouthful. Not fun. Keep well my friend. 16 years in you just live with the fact your still alive and with family and friendsxxx

[@theregularguy141]

Thanks Mark! 265 to 120?? Wow, just wow. I thought I was kicking along pretty good from 260 to 180. (Wish I could have stayed at 180...) I feel you, I have a bottle of water at hand everywhere I go and like you, I go through it pretty much after every bite. But as you said, it's something we have to live with. At least we are still alive and kicking! Lee

[@russgaartexastrainingandbo949]

im 290 right now i start radiation next week and im expecting to lose 80-100lbs, 25 years of lifting and competing gone at 46 years old. but if i live and i should i guess that is what matters

[@faithdenelzen8808]

I couldn't eat anything before and during my treatment. Survived on nothing but iced coffee drinks I can relate to the lack of saliva too

[@theregularguy141]

Wow! I have no idea how you managed to get coffee drinks down! I couldn't get down anything at all for several weeks. It was the PEG tube or nothing. That dry mouth is STILL troublesome! Do you still have the dry mouth? Lee

[@Rena-ol7dn]

Did anyone have a metal taste in their mouth whilst going through radiotherapy

[@theregularguy141]

Hmmm, I don't remember having that, but I did have a weird feeling every time I had chemo. Lee

[@bryanshedd3927]

I did.first question I asked.they laughed and said yes

[@hwy6163]

I’ve lost my hearing, and my ability to talk. I am taking weekly infusion treatments to try to extend my life. I’m terminal.

[@theregularguy141]

I am really sorry to hear this. Unfortunately I just don't have the words to be very supportive or eloquent. Please know that I will be thinking of you.

[@nenaronan8679]

I will pray for a full recovery. Jesus bless you ❤

[@theregularguy141]

Why thank you Nena! That’s very kind of you!

[@infredible]

Been there, radiation and laryngectomy, everything was tasting like dry cardboard for a few weeks. Salt on the tip of a spoon didn't registered at all, sugar was a tad better. Taste and saliva came back to about 70% after a few weeks but stayed there ever since. Some foods still taste wierd on occasion. Hang in there!

[@theregularguy141]

I agree, I only recovered about 80% of my taste buds as well. Yeah, things do taste a bit strange sometimes. Have you noticed that at times something tastes absolutely bland and the next time you eat it it has flavor? Lee

[@infredible]

@@theregularguy141 Yes, indead. Processed food tend to taste pretty bad. Some days, I am taking no pleasure eating certain of my favorite dishes. I noticed that it really depends on the saliva quality and quantity. I use Chilli olive oil on some dishes which helps giving it a little kick, perfume and flavor. Sweet foods and drinks taste more like before.

[@theregularguy141]

@@infredible I found that spicy foods became A LOT more spicy after treatment and even now I still haven't gotten back to my pre-cancer "spicy tolerance" level. Lee

[@annettepurtle3757]

Hi Lee,can I ask you if you are or living in India! You don’t sound Arab or look but I seen where you live . Just wondering sir, I wish you continued good health. And long life 😀🤗🤗🤗🙏🏼🙏🏼🙏🏼😻 It took me a good year before I got taste back.yes it does get better as it goes on. Have a wonderful day to you and yours.

[@theregularguy141]

No to both. Still living in Dubai!

[@ganjajay]

Hi Lee. I was wondering did you have your tonsils removed before the radiation treatment? And were you diagnosed with HPV 16?

[@theregularguy141]

Hi Jay, I did not have my tonsils removed. I never had any real trouble out of them, at least until last year that is and I still have them. As you probably know, there is no real "test" for HPV in men. However what we do have as that once the cancer is detected we do get the following, "The morphologic and immunohistochemical features (strong expression of p16) are most consistent with an HPV-driven tumourigenesis and raise the possibility oropharyngeal primary origin of the neoplasm." Note - This is taken directly from my medical report by my Oncologist. So in non-doctor speak, yes it is strongly believed that my throat cancer was caused by HPV-16. Thank you for your comment! This reminds me that perhaps a video talking about HPV and cancer is needed. I don't think there is a lot of discussion about HPV and it's effects due to the reluctance of people to talk about STD's. Lee

[@ganjajay]

@@theregularguy141 I was diagnosed with Stage 1 tonsil cancer with HPV 16 the beginning of October and had my tonsils removed later that month. This week I have a consult for radiation therapy. The hospital has proton therapy and I am hoping I’m a candidate

[@theregularguy141]

From what I have read, that proton therapy seems to be the way to go! I hope you get the good news you are looking for!

[@iamlyam79]

Thank you for making this video. I just finished my treatment for tongue cancer and the loss of taste really impacted me, but I just kept on eating real food and never needed a feeding tube. I hope I get taste back sooner rather than later but I appreciate you setting expectations. Best of luck on future scans.

[@theregularguy141]

Hi Lyam, Yeah, that loss of taste is bothersome, to say the least. I think the majority of mine came back, but certainly mot all. By the way, congratulations on putting down the food with out a PEG. There was no way I could have done that! Great job!! Lee

[@richardtharp1608]

Taste doesn't come back, you get Used to the New taste of Foods that you eat.. 8 to 12 Months?? .. I'm 12 years out and things Don't taste right Yet.. Be Prepared to See what I'm talking about.. Thanks

[@AmberMichealsCholeNicole-cj7sy]

Did you have leukoplakia

[@theregularguy141]

Hi Amber, I did not. I had no physical symptoms until I had the sore throat and earache 3 months before actual diagnosis. Lee

[@hajarelsayed20]

Hey so my grandma had her radiotherapy sessions a year ago on her mouth and neck but ever since it is still external painful for her to swallow or eat anything even very soft food and to this day she has consumed every painkiller out there and still and it doesn’t help with the headaches or mouth pain at all please have you any idea what medication she can try to help with the pain ? She lost over 50 kgs and she gets lightheaded sometimes faint please any recommendations or suggestions will help thank you

[@theregularguy141]

Hi Haja, Wow, a year ago and still extremely painful.... Unfortunately I really can't think of anything off the top of my head. I was using a patch that a slow release of fentanyl that seemed to help. At this point I would try to get referred to a pain management specialist through the oncology center. I am really sorry to hear this. that must really be difficult for you and her! Lee

[@deanwoodland1991]

I started eating again after 3 weeks i was too stubborn for a peg i literally forced everything down painfully for a while. The lack of taste is winding me up tho.

[@theregularguy141]

I slowly but surely managed to get most of it back, but not all. I agree, nothing like eating drinking something expecting a certain flor and it having no flavor or different from what you remember.

[@melissahill5783]

My lymphoma us about to be taken out ... big right everything in my node's

[@theregularguy141]

So they are surgically removing one or more of your lymph nodes, are you also going to undergo chemo and radiation as well? Lee

[@e.j.c1795]

11 treatments in and definitely losing my taste

[@theregularguy141]

Fingers crossed it will come back during your recovery. That really bothered me...

[@Rena-ol7dn]

Do you have a metal kind of taste in your mouth

[@e.j.c1795]

I did not have metal taste, just no tatse

[@Rena-ol7dn]

@@e.j.c1795 my mum is going through radiotherapy atm and starting week 3 tomorrow and everything is tasting like metal. She just doesn't want to eat.

[@matthewchups]

does sipping water resolve your dry mouth issue? were you able to sleep at night?

[@theregularguy141]

Sipping water definitely helps. I carry a bottle of water with me all the time now. It just makes life easier that way.

[@Danit.Talkscentswithme]

My husband had throat cancer , In 2017.. he’s got permanent side effects from it. Paralyzed vocal cords. He was stage 4. I would fix a pot of beans for him quite often for the protein and he put hot sauce and pico in it . He was on a feeding tube for a year, the only thing he liked was my pot of beans. You are doing very well, it seems. My husband’s damage is significant but he’s grateful to be alive. The treatments though have also caused permanent side effects, such as ED. It’s extremely hard for us both but he’s terrified to take any meds for it.

[@AmberMichealsCholeNicole-cj7sy]

Did he have leukoplakia

[@theregularguy141]

The treatments and their side effects are absolutely dreadful, but it certainly better than the alternative. Have your husband speak to his oncologist and a urologist. I am sure they have can come up with a suitable plan for him and for you. I had the same issue for months, almost a full year to the day from when I started treatments. Like your husband, I was deeply concerned as to possible side effects. Luckily I had a great urologist and oncologist who worked with me on the matter.

[@Danit.Talkscentswithme]

@@theregularguy141 thank you so much for that information and I’m happy to see you are doing much better now. 🥰🙏🏻

[@benjaminbirch5555]

Not even a week after finishing treatment im 19 year's old do you think I'll heal quicker than you it would really put my mind at ease if you said yes this has been a ruff journey for me and my family id like some knowledge from a fellow cancer patient 😅

[@theregularguy141]

Hi Benjamin, I would love to say "Yes, without a doubt!" and being 19 my mind says that is a slam dunk, however cancer is a strange disease in that some people recover quicker and easier than others. This is due to the type of cancer, tumor size, location, treatment plan, you as the patient etc. You can help the improvement though by staying positive, eating nutritious food and staying at least a bit active, no smoking etc. I do know that the 3 weeks after treatment were the absolute worst for me, but then I did start to see some improvements that seemed to accelerate. How are you feeling now? Lee

[@benjaminbirch5555]

@theregularguy141 mentally I would just like to see or like to visualise a end goal but it just seems impossible with how I'm feeling just to give more detail I've had mouth cancer stage 3 surgery was on the 11th of December I had 70% of my tongue removed and reconstructed from my left arm I was surprisingly discharged the 22nd of December to be home for Christmas that time was rough but better than currently I'll cut a slight bit to present last Friday I finished a 7 and a half week worth of radio therapy and chemotherapy only 3 doses of chemo so that didn't effect me if was the radiation I've currently got a nasty burn on my right side of my neck where it was being hit the hardest today I'm actually going to see my team and hear from them how well I'm doing and what I need to improve all and all I can't wait to get a cold glass of water down the hatch my throat is way too sore to swallow anything

[@theregularguy141]

@@benjaminbirch5555 Dude... I get everything you just said. I have been in you spot thinking about where / what is the end goal. It always seemed so far away that it just wasn't possible to reach it. While I did not have any surgery, I can only imagine how that must have felt. I'm hoping you get not only good, but great news regarding your treatment. Let us know how it goes! Lee

[@melissahill5783]

Also I've my tonsil and half my throat ! It's the worst @!! In sooner die ate this point as a little girl

[@theregularguy141]

It sounds you are having a pretty intense surgical procedure! Will you also be undergoing chemo and radiation therapy? I have heard that surgery is very tough but successful. I hope you get through everything safely and very good results! Lee

[@faithdenelzen8808]

I feel for you. I lost not only my taste but my salivary glands and the tear ducts in my right eye I've recovered my taste and appetite but not the tear gland

[@theregularguy141]

Hi Faith, I got most of my taste back but still struggle with the dry mouth quite a bit. How does the loss of the tear gland effect you? I'm genuinely curious about that. Lee

[@faithdenelzen8808]

Hi Lee The loss of my tear ducts in my eye doesn't really affect me. It's more the pain I get in the right side of my face and jaw. The trigeminal nerve was damaged

[@theregularguy141]

@@faithdenelzen8808 Wow, that does sound painful!

[@faithdenelzen8808]

I take painkillers for it Lee yes it's f. g painful

[@papayne]

15 months and still waiting… it ain’t coming back, so I’m becoming a good cook, trying new things all the time. Find things with thick sauces, gravy, grits, oatmeal, etc. provides the most flavor as it coats the tongue. Meds to help saliva help some… Lost my singing voice

[@theregularguy141]

LOL, I did the same thing. My wife decided I was a real masochist as the entire time during treatment when I wasn't "eating" I was watching cooking shows and, like you got pretty good afterwards. Mmmmm.... Grits with bits of bacon cooked in.... Love it! Good luck in your recovery! Lee

[@MrSurferglobal]

I love you videos, thank you!

[@theregularguy141]

Thank you for watching and taking time to comment! Let's keep it going!

[@sninstall]

The drinking the protein drinks for 4 months and nothing was hard. I knew my taste was returning when i could taste them..yuck chalky. 15 months out everything taste, dry mouth, pain is all about 85% better.

[@theregularguy141]

When I was able to actually taste food, I was definitely excited. I was very relieved that my taste buds came back, mostly. That was definitely a concern. I do so love to eat... Lee

[@davefarr4596]

I’m almost two years since my treatment and I’m just starting to taste again I just have to get my tongue coordination back It gets bit a lot but my saliva glands are still not working right and my voice is unrecognizable but I’m still alive and hoping for the best

[@theregularguy141]

Hi Dave, keep plugging along. That taste coming back can be real slow. Glad you are with us! Keep us up to date as I am sure there are many others that feel the same way! Lee

[@TT-hi1qv]

Thank you for sharing your experience,I am being treated for throat and tongue cancer!! Zero taste and awful taste in my mouth now acid metal taste now feeding with stomach tube!

[@theregularguy141]

I understand! That stomach tube was a real lifesaver for me! Lee

[@dalewyatt9405]

I have cancer from tonsil. Did chemo and radiation make you sick or not eat? Did you have to get a feeding tube?

[@theregularguy141]

Hi Dale, I was definitely nauseous and I was not able to swallow anything. I did have a PEG tube and that was quite literally a life saver. I was eating 4-5 times a day through the tube. I can not emphasize enough to get the tube whether you think you need it or not. You can always decide not to use it and have it removed afterwards. It is a quick and easy procedure to get it in and out. When do you start your treatments? Lee

[@dalewyatt9405]

@@theregularguy141 probably next week or so

[@theregularguy141]

@@dalewyatt9405 Good luck to you Dale. Keep us updated with your progress! Lee

[@jeffreyclassey9636]

How are you doing now Dale? I finished in November 23. 35 rad treatments and 6x chemo cisplatin. I also had a PEG tube - thank goodness. Chemo made me sick but no vomiting. Radiation was worse for pain. i still have an ulcer in my throat which hurts when swallowing (3 months out). Taste is coming back - maybe 50%

[@heidikurz6609]

Thank for sharing this. I just had my surgery for oral cancer and am about to start radiation. Hoping I’m one of the people with hardly any side effects but investigating all different stories.

[@theregularguy141]

Hi Heidi, Hopefully the side effects will go away after you have finished treatment. It took approximately 8-10 months after treatment for me to get back to normal. Good luck with the radiation treatments and keep us updated on how it goes. Lee

[@randyjohnson2126]

Lost my taste 2 weeks into treatment. Makes eating difficult. Thanks for your videos, they were a HUGE help going into this.

[@theregularguy141]

Thanks Randy! My taste did start coming back and I'm pretty sure I got about 80% back by the eighth month after treatment! Lee

[@sreanaya]

Hiii sir I wanted known my husband has tongue cancer after radiation or chemo its tongue will be normal or not....?rely he done 20 radiation now

[@theregularguy141]

Hi Sreanaya, Unfortunately that is not a question I can answer. Their are just too many variables in each person's case. I sincerely hope that his tongue will get back to normal after the procedure. I would suggest asking the oncologist about that. Lee

[@shanevickers1654]

I had a tumour removed from my nose, three surgeries, 7 weeks of radiation and 6 years later taste and smell still disappear, it can be a long road but its worth it...

[@theregularguy141]

Hi Shane, That sounds like a really tough treatment. I'm glad you recovered. Six years is a big landmark. Do you have any taste or smell at all? Lee

[@rice1401]

Hi I am 1 year today post treatment and still have no taste ! I was told when I get to 2 years that will be the best I will recover so still a year to go !

[@theregularguy141]

Mine seems to fluctuate, its really strange. Sometimes I taste certain things and other times not so much. Lee

[@korva010]

you gave me hope.Yust got home from the second radiation treatment, and ofcourse survive this is the main issue . But all my life I play in a band as a bassist ánd singer. Wil my voice come back? so you got your singing voice again! man thats great! gives me much hope. thanks and the best wishes for you. Greets from Holland

[@theregularguy141]

First of all Korva, thank you so much for the kind comments. Will your voice come back... That is a tough question. I believe it is going to come down to how much damage you get from the radiation. My voice was weak and raspy after 35 treatments. Gradually it did come back to somewhat normal. I did find that I was not able to carry a tune, at all shortly after treatment until almost six months later. Now it has gotten better, BUT I am not a singer, so my being "ok" is a far cry from what you, as a professional musician" would call ok. I would definitely consult a voice coach / speech therapist to try to keep everything as normal as you can. Lee

[@korva010]

Thank you so much . And good luck.

[@georgeprosser3038]

Been eating good lately still got the peg havent used much lately, 4 months after Radiation and Chemo , getting teeth back Dentures pulled 18 teeth before treatment, Feel fortunate after watching lee and the good peoples stories , my throat opens up knowing the type of food I likw that i can eat without teeth helps ...

[@theregularguy141]

Hi George, That's great news on getting past using the PEG. I think I was right at 4 months when I got mine taken out. Lee

[@jeffreyclassey9636]

Great channel. I finished treatments in Nov 23. it's good to be able to read about all of the different experiences here. I had surgery/chemo/radiation and the beloved PEG tube. I would love to give people advice but i dont really know how to let people contact me. Maybe there's a group somewhere on the net?

[@theregularguy141]

Thank you very much Jeffrey! If you are in the US, I would suggest contacting the American Cancer Society (link below) and sign up for their programs and services. From their I believe they can direct you on how to volunteer. Congratulations on completing your treatments. Have you had your 90 day PET/CT? How were the results? Lee www.cancer.org/support-programs-and-services.html

[@bainebikerx3170]

The peg tube is horrible 😫. Although a necessity.

[@BruceGordon925]

(Throat cancer) Bacon and eggs, Can't smell the bacon cooking, The eggs taste nasty. A nice steak, a waste of time, cardboard. Sweets come thru, a salad with dressing works. I think some taste buds work while others don't. It's been 3+ years after radiation. I expect it's not going to get any better. YES smell is GONE. Been looking for more people who lost their hearing, I'm now deaf in my right ear and I think 50% of my left ear hearing is gone. No longer need to shave under my chin or throat. Ah but still alive in my 4th year.

[@theregularguy141]

Man, that is tough Bruce. What chemo drug were you on? I have the same on my throat, no need to shave it except for one small strip down the right side of my esophagus... Weird... Lee

[@BruceGordon925]

No Chemo, Just 36 radiation treatments. I had a Total Laryngectomy and now have a stoma, Started as a late stage 3.

[@theregularguy141]

@@BruceGordon925 You know, you are right still being around at year 4 is a big deal, especially after what you have been through. Lee

[@matthewchups]

how long were you able to work after treatment?

[@theregularguy141]

Hi Marvin, My work situation is a bit different. My work commute is approx. 1hour, 20 minutes each way. This led to my decision to work only 1 week into my treatments and then start back about 3 weeks after treatment ended. I was then office bound for about another 10 months before I was medically cleared to get back to flying. Lee

[@WindsofChange]

@@theregularguy141 And you were able to stand going to work at 3 weeks after?

[@mosesdejesus6928]

Thanks so much for that information, can't wait to be able to taste food again

[@theregularguy141]

Once it starts to come back, food tastes glorious. It may be a just a bit off, but it is nice to get at least some taste back.

[@MrPlod999]

Are you Ian Bothams dad? (Question is with respect)

[@theregularguy141]

Ian Botham the cricket player? No, not me, LOL.

[@SonyaM7]

My treatment finished 14/9/21…. My tastebuds are mostly back to normal… although still very sensitive to spice! For a start everything had a strong peppery taste, pleased that didn’t last! Dry mouth is still there, but not waking multiple times a night needing water, so there’s improvement 😁 Buzzing in the ears seems to be going to be permanent…

[@theregularguy141]

Except for the waking up for water and the buzzing in the ears, we seem to have very similar journeys! How are you otherwise? Where was your primary tumor? Lee

[@SonyaM7]

@@theregularguy141 I also have the permanent buzzing in my ears…. First dose of chemo did that one. Still waking through the night and needing water but not every hour like I used to. My primary tumour was in my left tonsil and a secondary on the left side of my neck. Fatigue is still my biggest struggle, more fatigued I get the less I can sleep

[@theregularguy141]

@@SonyaM7 I never had the buzzzing issue, but I have heard that the chemo drug Cisplatin can cause buzzing, ringing, and even hearing loss. The fatigue, yeah I still have that as well. I haven't quite mastered how to deal with that. The more fatigued the less I seem able to sleep. Very strange... Lee

[@SonyaM7]

@@theregularguy141 yeah that’s the chemo I had. Ohhh I thought I was losing it! I’m exactly the same, the more fatigued I am the less I can sleep!! Crazy huh?! Oh and the brain fog! It’s like baby brain on crack lol

[@mommystips9998]

Do u have robotic surgery??

[@theregularguy141]

No, no surgery at all. Lee

[@Johnnylight828]

Thanks for sharing gives me hope.

[@theregularguy141]

You are so welcome Johnny! Good luck going forward!! Lee

[@sturkiestercreations]

Been watching you because I'm just getting through with radiation and chemotherapy due to the same kind of throat cancer as you had. I've managed to not loose any weight but it's been really hard. I totally get it when you say you like to eat. I would love to taste my food and drink and will be so happy to taste again. Good luck on your PET scan🙏

[@theregularguy141]

Hi Sturkies, I do love to eat. It will take a bit, but you should get there. I think I hit max recovery at about 8 months after treatment. I have about 80% of my taste back, and thats not so bad. I do have to say that spicy foods have taken on a whole new meaning for me though! Lee

[@sturkiestercreations]

@@theregularguy141 I've been buying those frozen Mexican TV dinners and if I make sure everything is soft I can swallow it. Since I can hardly taste anything at all the spicy foods don't bother me. Lol

[@carlhelms595]

I start my radiation today. Given what you have gone through so far and are still going through my question is would you do it again? I'm having trouble deciding if I did the right thing by opting for treatment and living through the hell it causes.

[@theregularguy141]

Hi Carl, You have asked the million dollar question, "Would you do it again?". Your question made me stop and think, and think carefully (not normal for me). I stepped back and looked at some past photos, my treatment book, etc. After some serious self reflection, I came to the conclusion, yeah, I would do it again. It was tough, but survivable. I look at what I went through as being nothing compared to what I would put my family through if I opted out of treatment. If the cancer comes back (always a chance of that), then I would do it again, without hesitation. Now I know what mistakes I made and hopefully how to avoid them and make it easier on my self. Yeah, 100%, I would do it again. This is a tough decision that each of us has to make based on our own situation. Whatever you decide, we are here to support you. Lee

[@mindimartian9821]

Hi Carl, YES. I'm glad I did it ONCE. Don't know what the answer would be on a second go round. I can tell you that I mentally questioned my choice everyday during the last 4 weeks of chemo/radiation treatment. It was horrible, AND I survived. How are you doing on your recovery now?

[@carlhelms595]

@@mindimartian9821 I'm doing well. I still haven't gotten my sense of smell or sense of taste back but the doc isn't concerned yet. My energy levels are returning but slower than I expected.

[@mindimartian9821]

@@carlhelms595 I am glad to hear that you are doing well. You've conquered a lot to get to this point. Yes, the energy level thing takes a little while. It does help to do some exercise (I rode a stationary bike). Somehow, expending energy gives you extra energy. Makes no sense to me!!! I was soooo anxious at the end of my treatment to "get back to normal", but now, at 8 months post-treatment, I realize that when the doctors said to think of recovery in the context of years, not months, not weeks, is true. I am no longer wishing for things to be different that they actually are. I know I am healing a the perfect speed. Take advantage of everything your insurance will pay for: Physical Therapy, Speech Therapy, Chiropractic, etc...

[@ptsdarren6223]

Man, that's good to hear that your taste buds are coming back. You look good and look like you have some great energy. I'm not looking forward to the dry mouth.

[@theregularguy141]

Yeah, the dry mouth is kind of a pain. I carry a water bottle all the time now. I mostly wake up at night and my mouth is Sahara dry. A couple of sips and I’m all good. The taste though, now that was a huge relief to get back.

[@melissahill5783]

Never did you ask about me?

[@theregularguy141]

What?

[@juneramirez8580]

It's horrible! Eating is just so hard. I see everything I enjoyed before throat cancer and it is all changed.😢😢😢. I finished my cancer treatment the end of July 2023. Some taste is coming back slowly! Can't wait until I can enjoy a good rib eye steak again. Hoping I can enjoy Thanksgiving turkey this year. Wishing you all well!

[@theregularguy141]

Hi June, You are right! Eating is tough after treatment. It was for me as well. I finished my treatment on SEP 08, 2021. My goal was to be able to enjoy a good meal at Thanksgiving with my wife and daughter. As my daughter was traveling 7,000 miles to see me, I was determined that I would be able to enjoy meals with her and my wife. Well, it worked!. By Thanksgiving, I was enjoying a T-Day Turkey with veggies and deserts. Now, all of my taste wasn't back (yet) and I did have to drink some water with every bite to get it down easily, but I did enjoy it! Work through it slowly, take your time and only when you feel ready. You will surprise yourself. I do have a question once you are able to chew and swallow somewhat normally, do you find your mouth/throat more sensitive to spicy foods compared to what you used to experience? Lee

[@darrentohtv]

Hi Brother. Did my radiotheraphy for NPC and completed the 7 weeks treatment 4 months ago. It was not fun for sure. Anyways, i am going through the dry mouth ( feels horrible) but i also have the unpleasant sensation on the saliva glands. At times it feels inflamed and even swollen (like someone stuff dental cotton between your teeth and gums). Anyways, it feels like i still got long ways to go before i can have solid food. Just wanna say I feel you bro...Best of Luck on your recovery and i look forward to your future updates

[@theregularguy141]

Thanks Darren! Fingers crossed the insurance comes through and I get the scan as soon as possible. I've been fighting the insurance fight for the follow on scan for 2 months now... May have made some progress yesterday by getting higher in the food chain at the insurance company. Lee