End of week 6...miserable
Well I finally got hit with the treatment **** storm. When you layer 6 visits of chemo right on top of 33 radiation visits you finally are crushed under the treatment by week 6. I've been very lucky not to have scorching throat pain until now. I cannot swallow any smoothies because the nutrients stick to the burned areas in my throat. I can drink water but it's very very tough. I got down about 2 liters yesterday. I think I can do it again today but I feel the last chemo visit (from Wednesday) is here to collect it's fee this Saturday. MD Anderson's treatment plan is really hardcore. This is to treat my first instance of HPV P16 related cancer. Hopefully my last since this has changed my life. No more fast food, no more high processed food (think Sysco) so no more diner trips for breakfast with eggs and bacon. No more drinking because alcohol no doubt was pouring over my tonsil where the cancer was every day. I'm sure it caused inflammation that spurred the HPV to come alive and become cancerous. I've been reading a ton about the immune system and the simple things we can do to stay permanently cancer free once this **** nightmare is over. I will never do this again.
In the meantime does anyone have any recipes for broth that is veggie based and gives you hydration as well as nutrients? I'm quite desperate. Thanks in advance
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Well, swim you are certainly at one of the worst parts, except for the 2-3 weeks following treatment but it's all downhill from there. Sorry, you feel so bad but it seems that's what this regimen does.
One of our very own on the H&N section here had a chicken broth recipe he used for many things and I am sure sipping was one of them. I found his post and there is a link below and I may be able to come up with a couple more later. Take care-God Bless-Russ
SORRY, I JUST REALIZED YOU SAID VEGGIE BASED MY MISTAKE.
But here is a link to a recipe that may be what you could use.
And here is something basic in a plant-based broth-
Lots out there on the net you just have to pick and choose what appeals to you and how much effort you want to put into it.
Again-Wishing You The Best-Take Care-God Bless-Russ
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Hello, Swimbody! Healthy lifestyle changes and habits are the ideal, but don't be too hard on yourself. HPV-related cancers hit even the most abstemious and teetotaling folks. Impossible to know for sure what triggers the virus in one person and not another, or why the majority of folks shed the virus after a period of time, and others don't. Still, the Standard American Diet (SAD) is not a good thing. Wishing you well through this difficult (understatement) time. One day at a time, sometimes even one hour or one minute at a time, but then it's over and you go on. That's how it was for my husband, who didn't drink much and had a fairly good diet but still was hit hard. As for the recipes, did you happen to check out the Superthread link at the top of the Head and Neck forum? As I recall, there is a whole section on nutrition and healthy eating and recipes. Wishing you all the best.
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Swim
2 points: 1) Your body needs nutrition to help it fight the fight. Chemo is poison that your body is struggling with because it kills good cells along with the C. Nutrition is vital to help your body deal with this. I can't help with recipes because my team knew where their C&R regiment would take me and I got a PEG before tx.
2) H&N is the 2nd harshest C tx, next to Rectal. What you're going thru is very likely easier than some of us old timers, but it's still one heckuva fight. All that means is that if others have endured the negative symptoms of tx as H&N C tx has advanced, so can you. Therefore, chin up and keep on fighting. It's just a couple months in your long life, man, and what you're fighting has only one thing in mind- killing you. Hence, you and your Drs. have to kill it.
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I drank stuff called "Liquid Hope" that the dietician at the radiation center told me about and luckily, had insurance at the time that paid for it. It is rather thick but you can thin it down with water is what I do. It's made from all good stuff and way better than that sugar water Ensure they tell you to drink.
Still buy it and drink it when I don't feel I can chew as well as I want like last week when I was having some serious dental issues.
Good luck swimbody..it WILL get better.
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Hi All, I am a 15-year survivor of HN cancer and, reading through these posts reminds me how lucky I've been. In addition, I am putting together the beginning of a manuscript for a book about HC cancer, I have only a concept in mind, nothing concrete yet! If anyone were interested in sharing their story with me, that would be a great help. Thanks.
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Hey y'all had a rough three days. I had to go to MD Anderson's Acute Care Clinic on Tuesday since I could no longer feed myself properly. I was losing weight rapidly because I could only choke down about 1000 calories in a day. They put a nasal feeding tube in me and taught my wife and I how to administer meds and meals through this tube in my nose. My weight is now stable, I completed the last of 33 radiation treatments and finished off nightmarish chemo 6 last week as well. I'm now in repair mode!! I have a mouth and gargle rinse called Ulcer Ease. That stuff is freaking amazing. We're putting 2700 calories through my nose. I'm on Dilaudid every 8 hours, 4mg through the nose, 900mg gabapentin in liquid form, and 10mg of zofran liquid, since I lose 70% of the drug going through my stomach. It's so inefficient taking meds orally. I'm working with a company to change that. Stephie how are you doing?
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Sorry for the rough time but unfortunately it is part and parcel of this rough treatment. I know what you are going through. It is not unusual to have a hospitalization for something during this treatment. People get worn down and beat up. After I was in treatment for a while my Parotid gland got inflamed and infected and I was having an increasing fever and ended up in the hospital on intravenous antibiotics and was there 5 days till I got out. They had me transported to the radiation center so I didn't miss my rad treatments. Sounds like you are over the episode and they have you set up well to get food, water, and meds. Hang in there you are now through the treatment and you may feel a little worse for 2 weeks or so but after that, you should notice starting to Slowly, and it is a slow process, Slowly start to feel better. Recovery from other illnesses we consider we will feel better in a couple of days or a week with this treatment it is weeks and months so be patient and be kind to yourself.
Wishing you the best-Take care-God Bless-Russ
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Hey Russ thanks for your kind comments. What's your age of I might ask? I'm 49. A non smoker, I'm at the perfect weight for my age, was swimming 4000 meters a week up to week 4 of treatment, and I don't ever ever ever eat toxic fast food. Just wanted a comparison. Thanks
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Man +1 day after last treatments. Made 6 rounds (3 rounds Cisplatin and switched to Taxol/Carboplatin for the remaining 3. 33 radiation treatments and I'm wondering how folks fared for their first couple of weeks after treatment. How trying were the first 3-7 days after. Did you ever feel suicidal? The thought actually crossed my mind for a split second. How stupid of me. Some words of encouragement and what you went through would be greatly appreciated. I'm in misery right now. Whole mouth just exploded with ulcers. I'm rinsing my mouth 5-6 times a day with baking soda and water plus a lidocaine rinse called Ulcer Ease. I know I'm repeating myself but figured I'd ask once more. Thanks Swimbody
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Swim,
Check my original thread https://csn.cancer.org/discussion/324363/new-to-the-club-here-larynx-cancer#latest - well it sort of turned into ‘our thread’ considering your story is in there as well🙂! It became a “team story” You can also add you story to a new thread for people looking for just your cancer and copy your story to a new thread.
I could asked to mods to change the title of my thread to add tonsil cancer to it as an addition from another as well.
My last day was the 28th for radiation!! You should be graduating soon. I included some photos of my mask and certificate. 😅
Get to feeling better out there! I hope you wake up in the morning and your feeling 10 times better!
-Stephie
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Swim, obviously everyone’s case is different but I too had 35 radiation treatments and 7 Cisplatin chemo infusions. My last radiation treatment was on April 6th and i felt like total **** for the next couple of weeks after the treatment ended but then the road to recovery began. When i look back it was relatively swift. By May 12 I was feeling well enough that I flew to Florida to visit my family to prove to them that I was OK! I was still napping daily but I was back on the treadmill, got dressed every day, had lots of visitors, went to a couple of restaurants and looked pretty damned good. All of my visitors thought I looked great, and couldn’t believe what I’d been through.
I was getting my nutrition through a PEG but while I was in Florida I decided I was committed to eating normally again. I started with smoothies and drinking Boosts and trying different foods, soups, etc. the next week, after returning home I had the PEG removed. Now, less than 9 months later, I can eat anything and do anything. Everything doesn’t taste great, and I still keep a glass of water on hand at all times, but I’m back!!! I’m planning trips to Hawaii and England and Scotland!
Again, I can’t say what your timeline will be, and I was spared a lot of the trauma you’ve had to deal with by having the PEG installed, but there is light at the end of the tunnel and it’s not a train! You will get through it! You will probably have another couple of rough weeks but that’s it! Be the competitor that I think you are and before you know it you will have won!
Good luck!
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Well, Swim you are certainly in the roughest time for sure. In fact, sometimes the treatment is so hard on you that you feel like you are dying from the treatment, but you are not. On the contrary, you are living and your cancer is gone. You had a lot of good people working on your behalf, doctors, nurses, radiologists, chemo people, and so many you can't name them all, and people behind the scenes processing biopsies and planning and mapping out your radiation and schedulers for your appointments and they are lookin to see you get through this and you will. I guess that's what's so hard about it, the treatment you get gives you life but once administered it feels like you are dying from the treatment. OK, I am trying to talk to you here and reminisce a little. I remember feeling so bad and so tired I remember thinking maybe it would be better to die. I felt so bad but then I thought well I can't die now even though I feel like it because they just got rid of my cancer, so that's out. This recovery is Slow and takes time and is measured in weeks and months not several days to a week like the case of the flu or a bad cold. Swim this is the place that pulled me through. I remember a person on here said you can find the strength to tolerate, and deal with and fight to get through each month, if you will, each week, every day one day at a time, or even each hour, or minute, or second. There were people on here that I watched go through the worst treatments and operations and somehow they kept going from day to day and when you are in this some days do seem long but they kept going just like you will to the next day, the next week, and the next month and so on and one of these days you will wake up and just think to your self, you know I don't feel as bad today, in fact, I don't feel bad at all, in fact, I feel pretty good. You will get to that day but for now, you just have to stay nourished and have enough fluids and take your meds if you need any, and just give your body time to heal and rest and catch its breath. You have been through some of the most brutal treatment of any cancer treatment so you feel lousy for a reason. But it won't last, many before you, including me at 35 rads and tons of chemo have gone through the same thing and worse and we took it day by day and before you know it you make it to a brighter day. In fact Swim, I got to thinking, watch out can be dangerous when this happens, me thinking that is but I was thinking don't I have something I might have saved about this difficult period of H&N cancer treatment and recovery in my archives and yes by golly I found this little thing I wrote up about treatment and depression, etc. Reading over it I am thinking it was sometime after my first cancer in 2012/13 that I wrote this down, hope it helps. Swim the worst is here now but The Best is Yet to Come.
And remember to pray because prayer is powerful and I am willing to bet there were a number of people praying for you in the background since this started. To get you through this.
Wishing You The Best-Take Care-God Bless-Russ
Psalm 23
1. The Lord is my shepherd; I shall not want.
2. He maketh me to lie down in green pastures: he leadeth me beside the still waters.
3. He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.
4. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
5. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
6. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord forever.
After first cancer--
We certainly go through many feelings and emotions from start to finish with our cancer diagnosis and treatment. Went through the why me question a bit but decided well it is me that has this cancer and I’ll deal with it as best as I can. Certainly wouldn’t wish it away on someone else. I may have been a bit depressed at time but did not need meds other than what I had like Ativan and Hydrocodone etc. You go from diagnosis to a bunch of tests and scans then I had to get a port and feeding tube put in. Then you get a treatment schedule and not long after that it’s treatment 5 days a week so you are busy, busy, busy. Then finally and suddenly the fight is over. Treatment done. Now suddenly you have nothing to do all this free time. But wait you realize you feel lousy and you have a recovery period to go through you don’t know how long it will be just estimates you have read about. Finally after several months or more you are starting to feel better but recovery is slow.
So I would say many of us go through your feelings and situations or at least some of them and we wonder is the cancer all gone, will it come back, will I get a new cancer? Always a remnant of this in the back of our minds.
I was blessed with God watching over me a church family praying and supporting me.
So from reading this forum with the many intelligent and knowledgeable people on here and my medical teams were great supporters and I got strength and support from them. And from reading the folks on this forum I was told recovery is a long slow process and it is I can vouch for that just be patient and give it time and if you need some meds or counseling or whatever to get you over some humps in the road by all means use it. And another thing I learned from the folks on here-actually I credit Skiffin for it-NEGU- “means Never Ever Give Up”.
And lastly here is a link to a 17 minute video addressing the treatments over now what do I do-treatments over and living afterward-very good video called “Lost in Transition” and you may have to copy and paste it in your browser address window.
A short film/video by the Institute of Medicine about the problems that come up after cancer patients successfully end treatment and look into follow up.
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Thank you so much for your comments. My body, already feels really good because I'm now getting the nutrition I need. All the essential protein needed for cellular repair as well as intense hydration. My wife found an amazing turmeric powder that she adds to my liquid meals. Helped with the inflammation. At least my body feels very good. No longer weak but the pain in the throat I'm now going to refer to as a collection of wasp stings. Just took over 1.5 hours to eat, take pain meds, hydration etc. Now I will get real quiet and isolate myself in my study to game all day like a teenager lol. It helps me to not talk, no multiplayer he he. My wife loves to shop so she's taking off so just the dog and I'll be hanging today to heal.
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Swim!
that is not brought up as much as I would thing, but it can be frustrating. After the end of i weeks (and during the 8th) i found myself speak more. My husband has been working form home since 2020. He is not a big talker, it is just that it sure did make a different when he was here all day. It causes me to talk more and I’m not supposed to talk… it can be frustrating because you don't even think about it. It’s like reflex when someone else it around! We ought to put something on our phone to push to remind us… We should have our spouse yell do not speak and make it into a ring tome tone, and some other things :) a lot a great advice from the others!
-Steph
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I couldnt speak for a while because one of my vocal chords was blown out and my wife hated it……back and forth banter was missing for her in a world where so much else was already missing because of my condition and COVID…..she was so happy when I could talk again…..everyone else, not so much!
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