Newbie
Hi, My name is Kurt. On October 1, I was diagnosed with tonsillar cancer w/ has metastisized to 4-5 lymph nodes on the same side of the neck as the tonsillar mass. This was based on a CT Scan w/contrast, a PET Scan and a biopsy all done the last 2 weeks in September.
Its stage 1, T1,N1,Mo (HPV+ -- P16+).
I begin chemo/radiation on OCt 25, 2021. Have a fair amount of info on the side effects but still am somewhat apprehensive of the entire process.
Anyone have any thoughts based on your experience?
Thanks,
KurtS
PS- I dont post on forms often and dont always follow daily. That may change!
Also if this is the wrong forum, jst let me know!
Comments
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Kurt
Right Forum. Others may post and give you their history, which is irrelevant to you- we are all different. Realize this is 2021, so H&N C tx has come a long ways to the Positive, we all survive the 1st round of tx, you have no option but to go thru tx because the C has only one thing in mind- killing you, let your Dr.s know how you're doing so they'll know and can help with the side-effects, those of us on the Forum are all Survivors (I'm almost 13 years) and our testimonies are proof you will get thru this and have an acceptable, if not great, quality of life. I'm sorry C has brought you here, but it is a good place for answers to specific questions with info from our experiences.
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Thanks Logan51. Reality is
Thanks Logan51. Reality is setting in as treatments begin in 3 days. Had a port put in my jugular yesterday around 2pm. Felt tired from the anesthesia and took a rest at 4:30 pm with alarm set for 6. Awoke at 1am wondering what happened. Pain at the site. Trepidation about being bolted down to the gurney with the mask on and hearing about the side effects like swallowing are currently my greatest concerns. I'm 5'10" @ 200lbs so loosing 20-30 lbs may be welcome. 13 years survivor is encouraging Logan51 and thanks for the welcome!
I'll have to navigate through the site to get more familiar.
like you said, glad the site is hear but never figured I would be because my family has coronary issues more so than cancer!
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KurtS,
Cancer treatment is a very scary situation for sure, and it can be challenging at times.
I remember the fear of the radiation, the first time I got strapped to the table. But, in a couple weeks, they played Aerosmith for me, and I just got used to the 15 minutes (usually 4 songs worth) - and it was all over.
Take good care of your skin, for sure. It will be like a sunburn for a while (although my neck/face healed up quite quickly, afterwards).
Also, don't be surprised if it doesn't sap your energy for a while. It takes a lot of energy, for your body to regenerate itself, after treatment. Please expect life to slow down for a little while, and get the rest you need!
You're in the right place, bud. I got a lot of great support and advice here ... when I needed it!
I wish you the best possible outcome; you can get through this - trust me!!
CurtJ
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KurtS,
As far as weight loss goes - I ALWAYS give this advice - EAT EAT EAT - ALL of your favorites and LOTS of them - starting NOW and continuing as long as you can!!
(Temporary loss of taste is almost impossible to describe, to someone who hasn't been there.)
I personally was able to eat (or drink) smoothies, during my whole process ... but I was Nasal (NPC) Cancer. Regardless, if you're able to keep ingesting food or liquid by mouth as much as possible - it's a plus, in the long run.
I lost 45 pounds at one time ... but as my girlfriend will attest to, I found 30 of it back - in just a couple years .. LOL.
Please keep in mind that most of this is temporary. It will be a challenge; you will get through it; and then you'll help others get through the process.
CurtJ
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Side Effects
Thanks CurtJ, I appreciate your response!
I'm getting past the part about "Why me God". I have lived 65 years pretty much unscathed through a life of ups and downs but I have learned how blessed I am. Living around excellent medical care, a loving God in my life, a loving wife and adult children, and dozens of true friends in my AA family - ten years last Sunday. I have learned acceptance, humility, and helping others as a cure for my issues. My daughter, away at school has sent me a care package with: books, crosswoard puzzle, zylimelts, ACT lozenges,Jean's creme, Salivia, a humidifier, etc. --- to have all in one place! I am blessed.
Yeah Ive been told lately to eat any and everything I like. No one (dr's at least), have ever told me that before
Going out tonight to my favorite Mexican place here in Annapolis, Md. - Senor's Chile. They have some Bolt, beautifu-looking, audacious Hot food! I will go at it with my usual culinary wild abandon!
I hope to use the resources here during my treatment, then slowly but surely begin adding value to this site with my experience - just like you are doing!!!
Thanks Again motorcycle guy!
KurtS
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Newbie
After the first three weeks, I was partial to 5% Fage Yougart with applesauce and supplemented with Soylent vanilla Fruit based drinks did not agree with my mouth/tastebuds. I think is was the acid in fruit, and popcycles didn't help either. You get used to having your head pinned down, just meditate. Unfortunately, I was one of the erbitux alternates so I can't speak to the chemo.
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KurtS,
Well, buddy, I see a warrior, perfectly armed for the fight; you have family, faith, love, support, and great spirit!!
(I have a sneaking suspicion you're going to kick butt!)...
CurtJ
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I second most..
Eat, enjoy it!
On the plus side I see you are HPV +, which sounds wierd, but you are in a good place.
Read the superthread.
Things to note - you will need bottled water, lots of it. (I needed spring water) Non of the mouth stuff works as well as it used to, they changed the formula.
Get "Magic mouthwash" prescription from your Dr, or Lidocaine (I couldnt do the smell of magic mouthwash.. ughhh) I used to gargle with it, before I ate, helped a lot. Get all the anti nausea meds they'll give you, steroids too. I had 2 anti nausea and steroids for every chemo. I never got sick.
Dont be brave, get a PICC line. Way better than being stuck a whole bunch of times, especially if you need lots of infusions.
Feeding tube - meh, I refused it, many times. I didnt want to have to learn how to swallow again.
Towels, just for you, plate, bowl, silverware, for chemo and 2 days after.
You are just beginning the hurry up and wait part. As for the "why me" I answer, "why not me?" I wouldn't wish this on my worst enemy.
But we are here, no question is too dumb
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Thanks guys (and gals) for the Tips
The food tips sound doable, Thanks very much. ...and yes I'm a little anxious about the first chemo and radiation treatments beginning Monday 10/25/21. I do need to spend some tome on the Superthread and SuzJ your tips seem all very practical. The HPV+ designation (with p16+ biomarker) is what was thought to cause the cancer. I didnt know I was HPV+. With that said, this type of H&N C which so far has affected my L - tonsil area and 4-5 nodes is said to have a high success rate to radiation and chemo. While still a mystery to me, they say the Human Papilloma Virus (HPV) can be in your system and lay dormant for Decades before cancer strikes.
Yes, a vascular surgeon implanted a Smart Port, right under the collar bone to access blood draws, for infusions, contrast - if necessary, etc.
Also, I'm getting a collection of anti-nausea meds, steroids, lidocaine gel for the port, mouth washes, facial lotion, special toothpaste and brush, etc.
One question though, Why the personal towels, dishes, drinking glasses, etc?
Sorry in advance if this is made clear in the SuperThread - I'm going there next!!
KurtS0 -
Towels
You do not want anyone to share your towels, you are ingesting poison. Sorry, but I call a spade a spade. I got Pink, because my son would rather drip dry than use pink
Plus, all my others were cream, sage, or lavendar..I also bought a LARGE pack of plastic cutlery, that way you never get the metallic taste.
I lived on Boost strawberry - and whizzed up soup, until I couldn't look at soup any more. My stomach could handle a grapesize meal, yes, thats all. Chemo pushes your metabolism to around 3500 calories a day. I lost a lot.
One question tho, for those with cancer in a tonsil - why only take out left or right? why not take them all? It sucks anyways, just get it over n done with. I'm a "go big or go home" person
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I always wondered what the
I always wondered what the deal was with all the seperate dishes and flushing twice after I saw it on here. I don't remember anyone ever warning us about that either time my husband had cancer or when I did. Thanks.
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Kurt, first off, there is no doubt you are int he right place...add this tab to your home page and visit here often ..for a variety of reasons ..information, questions answered, catharsis, venting, crying, sharing, etc. Once done, you will be like some of us here that wish to locate "newbies" like you abd provide assistance, assurance, and support.
Interesting how our dates are so close.... 10-15-20 I was diagnosed with left side tonsil cancer that had invaded several lymphs. One thing you will read here that is more true than anything else.... EVERYONES CANCER IS DIFFERENT!!!!!! You and I may have the same HPV+, tonsil and lymph cancers, but where the cells are, how fast they generate, and how quickly they die are all significantly different..as will be our treatment.
My doctor recommended me for the TORS tonsil removal surgery and lymph node removal same day, 11-24-20. There were times in Jan/Feb of 21 that I was SURE I had made the wrong decision. A fellow cancer traveller here and I were going through thigns at the same time ... he opted for straight chemo/rads, I opted for the surgery PLUS chemo/rads. The pain and subsequent isses from tat surgery were HORRIBLE. I STILL have spots of numbness that may or may not go away in my jaw area. HOWEVER ... what I traded for that was a lower dose of radiation and chemo. You wil hear us use the term "rads" as in the amount of radiation ..every rad counts. Most folks without surgery get upwards of 70 rads. I got 60 on my left and to be careful they doseed me with 54 on my right. Because of those lower amount of radiation, I had a significantly easier time than most other folks on this page whe it came to the side effects and eventual recovery. (Remember me twlling you that EVERYONES IS DIFFERENT!!??) DO NOT mistake this for me having an EASY TIME ... it was horrible, seemed to last forever, and full of surprises. Since you are going straight chemo/rads, you will only have to deal with 7 weeks of BS, unlike my 4 months, but you will probably develop more of the side effects that you read about here..dry mouth, the mucosis, etc.
I'd love to say don't be scared, but that would not be fair..we are ALL scared (are or were, same difference). What matters is that we, here, understand those fears and we won't minimize them or make you feel silly for having them.
Some of the guys above mentioned the superthread..yes. Good, basic info there. But I think you will find synthesizing that stuff with the people here that have recently gone through this wil be a good alternative.
I, and we, will all be here with you through this as you decide you wish to share with us. So rather than give you all my advice in one swoop, I'll start with where you are. First, son't fret the chemo o rradiation. You got the PICC line..I did not ... so my biggest chemo issue was that jabbing to find a vein; you won't have that concern. Your oncologist will probably have hydration available to you whenever you want it and with the PICC line that will be a piece of cake. I would have rather dried up than risk another nurse trying to find my shrinking veins for an IV.
I did have a Gtube which was a heckuva lot better than my nasal tube, but I still hated it. Not the tube itself, but the seepage, the constant cleaning of it and other issues.
I took one person's advice and it is not too late for you too as well .... Piplilly suggested this process for skin care and it worked on my like a CHARM .. in fact at this point I only wonder why my wife and I did not do it all ove rmy neck (My scars from surgery woujld be all gone if we had) .... IMMEDIATELY after rads, even before you get dressed, apply pure aloe..no alcohol aloe. We bought one bottle and I still have half left after 7 weeks of rads. So you dont need a lot. Now, I got my radiation early in the morning. So some time in the afternoon, we applied PURE coconut oil. Then in the evening Pat (wife) applied the Aquafor and then we clothespinned a tshirt around my neck to keep it there and off the couch. If you did nto see my surgery scar, you would never know I went through 33 radiation treatments. It is your skin, so decide accordingly.
As for the eating, tasting, etc. Yep. I lost my taste around week 4/5. Like MCG said, no one can prepare you for THAT. It is just one of those things that folks that have been there understand and others cannot.
As for the tired .... absolutely. One guy above kinda glossed over it, but in MY case, for MY cancer and treatment, I was absolutely wiped after about week 4. I mean, I have two phones since I run a business in Tucson and live in NW Arkansas. I had NO energy to pick up either let alone consider texting anything. Pat handled both phones for me. I remember just wanting to sleep but one simply cannot sleep 20 hours a day. With Drs OK I took benadryl to help that but it was only marginally effective. THIS is what made those days seem so long. I can celarly remember one morning trying to eat a pudding cup ..now my throat would let me, but it took me 45 mintutes to do so as I was simply too tired and not the least bit motivated to lift that spoon to my lips. And hunger? Not at all. I would not even eat a small bowl of ice cream. Simply had no desire. To be sure, i CRAVED food .. had many afternoons where thoughts of chili dogs or patty melts or a Christmas ham made me long for them, but there was no way any of those were gonna happen any time soon.
I think preparation is the best medicine..you cannot be fully prepared since you do not know what you are facing, so all you can do is rely on us ... and since ...what?? Since EVERYONES CANCER IS DIFFERENT you have no idea which of these symptoms are going to affect you or not. So you have to prepare for the worst.
By the way, the chemo for me was easy .... BUT after abot the 3rd dose I started getting costipated ... be VERY aware fo this... constipation is one of those things that creeps up on you and hard to fix once started. I spent almost 3 weeks trying to find the right mixture of meds to combat that ..and trust me, dealing with a sore belly for 3 weeks while delaign with daily trips to the radiation table and everything else you gotta deal with is a problem. Initially I thought I was not pooping coz I was not eating ... wrong asnwer. DO NOT let this become an issue for you..learn form my misery. As weird as it sounds, I would start today jotting down the poop times ... preparation, my man, preparation.
Now some good news. This is a cureable cancer. Let your medical professioanls do their thing, don't fret too much over the crap. You are 65...you have had MANY 7-8 week periods in your life....this is just another short block of time in the overall picture ..... it WILL END. Oh and dont fret that damned mask ... I read so many people havig an issue with it...it ain't a thing. And for our cancers these days, if you are doing IMHR (I think t ha is the sacronym) then you will be in and out in under 10 minutes - in the odl days they used to play music and all, but the poor raditation techs have to set up and breakdown that room for dozens of patients every day, the last thing I wanted to do was add another step for them when I only had 10 minutes under the zapper. That is, I guess, unless you are natiurally claustrophobic. In that case they got meds for ya ...to be honest, I was more worried abot one of my laxatives kicking in while laying there than anything else. (Which is why I did not take my morning lax which in turn is poart of why I had so many issues with the constipation ... and to taek it at night when I was already only getting a few hours of sleep was hard to fathom...see why it was an issue now??)
But back to the pep talk part... it is onyl a few weeks and the "worst of it" is even shorter..3-4 weeks. We did it, you can too. And you will ... you really have no other choice, right? Get treatment or die. Neither is fun, but in one scenario you get to wake up again.
I am now 8 full months post treatment. I got most of my taste and stuff back within 7 or 8 weeks. I still have some swallowing issues due to some scar tissue from the surgery, but nothing I cannot overcome. In fact, except for the muscular scar tissue (fibrosis) in my left neck that will NEVER go away, most of my residuals are from the surgery not the chome/rads.
Kurt, I look forward to you keeping in contact with us and sharing with us, but I look forward MORE to next January and February when you are coming on here offering your experience to other "newbies" who are scared, curious, and seeking information. Some folks get their cancer gone and never show back up here.... some of us find a "purpose" in our suffereing to help others through theirs. No morla judgement either way. But as you go through this, you wil lcome to find out the guys and women here (other thanyour doctors of course) will be your very best sources of support and real-life, valuable information.
You may always feel freee to contact me directly...at the top of thie page there is a place where you can send an email through here and we can exchange addresses if you ever want. I'll always be honest with you, and I'll try to be humorous when I can. But more than anything I want to be helpful. Lean on that.
Good luck, sir, and know that you are among friends.
Don AKA Beagledad
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KurtS
Well, I hope your first experience with treatment is/was OK. After the 1st one, we start the countdown, until you "ring the bell" (or whatever your treatment center does to celebrate finishing).
It's amazing to think that I counted down every day ... and now I'm looking back on it - almost 2-1/2 years later.
One thing that I credit my relative success to, was my girlfriend's smoothies. I went through a period where solid food just didn't work for me. But, I could always chug a 20 oz. smoothie, no problem. (I got, but never used a feeding tube ... which I understand is a bit rare.)
Anyway, she's shared it with other survivors on here, and if you PM me, I'd be glad to get some of her nutrition ideas to you, also. Very good nutrition is key, to helping you heal up!
I don't know what time you fight the first round of this thing, today - but we're all behind you!
With the team you have in your corner, you're a pretty safe bet to get through this OK!!
CurtJ
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This board is awsome and has
This board is awsome and has given great info already. I will add a couple things from my perspective/experience:
Ringing the bell was anticlimatic for me because the pain was so intense I didn't feel done with anything. I only say this because I have visited with others that felt the same and we felt guilty for not being happy/excited in the moment and it is just how we felt. I will say stay in contact with your medical team. My wife had permission to discuss anything on my behalf becasue i knew there would be a stretch were i would be too sore to talk and to weak to have clear thoughts. I was given a low dose fentanyl patch that seemed to help me more than the other medications that I took concurrantly. I didn't use my full prescription but it was crucial for me over a 4-5 day stretch where it was the absolute worst. I hated the idea of a narcotic so strong so I quit as soon as I could but it made a difference. It was still awful but that allowed me to force down the water and high calorie boost drinks. Good luck, you will make it and will look back and be proud that you persevered!
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First Chemo, Second Radiation
First, Thanks to BeagleDad, Motorcycleguy, wbcgarus, and REM25, for your continued welcoming and concern and your personal experiences!
Day one of chemo was pretty mild. Through my port, nurse seemlessly added Cisplatin, various saline solutions, anti nausea and steroid meds. Met two guys who have the same thing I have, (with I'm sure individual specifics unique to them). I'm ported with general chemorad. One of the others had surgery + chemorad., the second was on his first day of chemo also, but was getting Proton therapy instead. we exchanged numbers and will compare notes in the future. Also, met some other wonderful survivors of other cancers, with a lot of strength, resilence and courage! Humbling.
Radiation (mask) on day 1 was Extremely tight. Second day discernibly looser, about 1mm of movement. Radar time seemed really short, maybe 5-10 minutes. I understand it must be very snug but day 1 had wafflehead for 4-5 hours, while on day 2 it dissipated in an hour or 1.5hours!
In a good mental place but the full toxicities have not come about yet.
Thanks again for all the good feedback. Ill be in touch by week's end to relate more of my experience, strength and hope!
Best to All,
Kurt
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Well You Got
Round 1 in so that is a big step and you had no problems so you are on your way.
And 2 rads down very good.
Hopefully, everything continues to go well for you.
It's great you have met all these other people, what great support you will have and also support them back.
So you have CSN and great local support where you are.
A great situation to be in.
Wishing You The Best-Take Care-God Bless-Russ0 -
KurtS
I'm just checking in. You're 1 week done!
Things will get a little more serious, as treatment starts catching up - so prepare yourself.
The most important thing to remember, is that it will be over, and you'll be back on your way to normal, soon!
CurtJ
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