New to the club here..Larynx Cancer.
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Yeah my taste buds were destroyed from the chemo. Everybody who's on chemo and radiation has the same thing. Complete loss of taste. If I had my taste buds I would be eating huge buckets of fried chicken right now no kidding. My throat doesn't hurt enough not to eat solid foods. If I just had my taste buds this would be a non event. Nonetheless here we are and I have nine more radiation visits after my 3:00 p.m. radiation session today. MD Anderson is very proactive. I have something like 50 doctors on my team if you can believe that! It's nuts. Of course my bill is probably going to be so scary that I will be paying off a Land Rover that I never ever got to drive. That's what I'm assuming. I can't recommend meditation enough. Just click that track on your YouTube channel put some headphones on put an eye mask on cuz that really helps in the beginning and just concentrate on your breathing while breathing in and out and doing that ohm sound. Doesn't matter if your voice is not deep enough to match the residents but the tone of your throat will get that resonance going out according to what the Buddhist monks are chanting. It should help your throat incredibly well. Sending you healing energy. Best
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Well thank you for your kind words. Yes the tonsillectomy was the most horrific pain I have ever felt. All the doctors at MD Anderson empathize with me and said you will not experience the level of pain you did with your tonsillectomy so hope that helps to brighten your spirits. This was said to me at week 1. I haven't had any pain issues since. I think it is owed to the fact that the cancerous tonsil was almost completely removed and there was just a little bit left in the intramuscular wall. I believe they have targeted that along with some other lymph nodes and I should be healed up in another two months once everything dies down from the chemo and radiation. So I expect a PET scan about 2 months from now exactly
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Ugh. I'm just so sorry. I just wish no one ever had to go through that. EVER. Any time I read Tonsil, I immediately feel for the person. I have never experienced it myself, but I learned about it from this forum.
I just got back from radiation and have 12 left now, I'm catching up to you, you need to take the lead again this afternoon. What do they give to people at MD Anderson to put on their necks, faces, or any other areas that are effected by radiation? For real, not just what they might say on the internet :) My neck is getting pretty bad, and my Oncologist doesn't want me to put anything on it anymore. It's so dry, I don't want to rough the rest of this without anything. He really said that and after saying that, said it was OK to use the Miaderm cream samples that the nurse gave me before he walked in. Sigh.
I thought we needed to wait 3 months on the first PET scan.
If I read your original post correctly, are you literally still @ MD Anderson? You are staying if that hospital full time?
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I live in Houston and this is the headquarters of MD Anderson. So going back and forth to treatments is a breeze. I have nine radiation visits left and maybe one chemo visit. That all depends on my blood counts. They keep going down so if it gets too low then I may be done with chemo. I'm praying that that is the case. The tonsillectomy was so horrendously painful that there is no freaking way the radiation is going to meet that level of pain. I have a whole bunch of medication to help me with it. The number one thing that has helped me through the nausea and the pain is dronabinol. It is made from marijuana aka THC and it is the most effective appetite encourager and nausea reducer and pain reducer that I have ever taken. And guess what, no constipation. My thoracic doctor here prescribed it for me. I am kicking **** no doubt because I am not constipated and I am thoroughly fed. I'm glad I turned to smoothies and then secondly found smoothie king which has a 1,630 calorie drink called the hulk strawberry. If you have one of those plus an MCT filled butter coffee in the morning along with an appetite supplement that you blend yourself with fruit etc in the morning and you are done with the total number of calories you need to stay at the same weight. The nice thing is I'm going to wait till next week and deliberately starve myself with fasting so I can get the rest of the 10 lb off me and then I'll be at fighting weight when I come out of cancer treatment. The immune system has an amazing response to fasting. After about 3 days your immune system goes into massive overdrive and starts to increase blood counts. That is what I am after
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I was wondering. It seemed odd it you were staying at the hospital and your bill after insurance would have been more than a Land Rover. I wish they made the cooler ones like they used to. The new Bronco looks kind of neat.
I have issues with constipation without this mess going on, **** in opiates and it is a problem. Ask if you can chug Magnesium Citrate and start taking Miralax 3 times a day after you're cleaned out. Or Senna K and Senna and alternating. (not really trying to give medial device) but that's what I am trying from my last advice Wednesday.
Make sure your electrolytes are ok to take that Magnesium Citrate. It WILL clean you out. Be near a toilet, and after chugging the bottle drink a lot of water. Then plan to be on the toilet a lot when it starts to work. PM me from your iPad if you need to about Buddhism, strange phenomenons, decent TV movies, or anything else to pass the time. I surely don't want to end up in the hospital with a blockage in the ER. I had figured out why I was having issues with constipation about 6-8 months before I was diagnosed, and no this.
I would like to ask you how long it took you to locate this forum, and also if you think there seems to be a very small amount of forums and other websites/information out on the internet out H&N cancer. I honestly had a difficult time. I feel like we're the red headed step child of cancers. Nothing against red heads at all either! I am so glad I found this forum, though.
Also you forgot to tell me what the elite cancer of the USA uses for neck lubrication when the neck burns start to get bad, I know you haven't got it bad though from what you've seemed to mention how you are, so you may not have run into this. I just want to know THIER secret elixir. lol
Also, you should not need to start yourself. If you are keeping your weight up pretty good, just remove some calories from the shakes. If too much comes off one week, up some calories. I have fasted quite often. The longest I have went on a water fast was 2 weeks. If it were me, I think I'd wait a bit on a water fast. It's hard enough to eat now. It's not that I have a lack of taste, I do have some changes in taste, but they are intermittent and they also often occur when I taste something, and then eat another food. Like I have a small plate in front of me with different items. That's when it gets odd. If it's the same food, like cauliflower mash something simple, it's easier. My throat doesn't like it, but I have to do what i have to do. I take a pain pill in order to manage getting it down. Drinking is just as bad. It just hurts. Heck, Yawning hurts.
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I use Aquaphor for the burn relief as well as something called Egyptian magic and something MD Anderson gave me called NutraShield. They also gave me a steroid cream that really works well to remove the pain in the itching. I put it on twice a day. I go to sleep with the Aquaphor on. I'm pretty wise when it comes to nutrition. I'm also wise when it comes to my body. I have this thing whipped. My wife is funny as she doesn't want me to fast. I told her I'm not going to do it until I'm done with the treatment and then I will start too fast so I can jump start my immune system.
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3 months used to be typical for the first PET, which is primarily used as a reference for future scans. false positives are bound to show @ 2 months. something showed on mine, but my ENT said he wasn't worried about it- over 13 years ago...And, years ago, at a major LA Hospital, after a 3-month they went in and removed most of the person's lymph nodes- which all came back negative. The Patient was celebrating...what, their Drs. misinterpreting the PET scan and having an unnecessary Op. to remove the clean nodes?
I've read MD is top of the line, but 2 months?
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Yeah, that's what i was thinking. I know MD Anderson is up there, but wow on their PET scans at 2 months! It's no big deal, Swim. I just thought that was something that MD Anderson was advanced with or something. Thanks for letting me know their techniques on the moisturizers for the radiation burn.
It's great to hear you so upbeat. You sure have kicked this horrible pest to the curb! Radiation today then we get our weekend break, my neck needs it! I am getting a bit worried about it. If it continues to keep getting worse at this rate they may have to pull me out for a few days. I do not want that to happen. I have heard it is NOT good to do that. I also am allergic to Sulpha antibiotics, so I don't think I could use Silver sulfadiazine. I asked about that Wednesday during my appt. and the nurse said they don't like to use it anyway.
So, who knows. I put my profile photo up because I took it around the half way mark, we shall see how I look when it's over. On that day I also have another photo that got a pretty good shot of my neck, it is was pretty red then... I need it to hang on for me for just 10 more days after today!!! The Doc told me to not put anything on it. I cheated last night, but it was with the sample cream he told me I could use. He had to say that, honestly. So it's dry from now on, and itchy if that's what it will take.
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They are treating my whole neck with "moderate" radiation. But high level on my left where the malignancy on my left vocal cord is. However my whole neck looks like it's taking the same beating. I had no node involvement according to CT/PET - and the doc stated my neck is thin enough where a a swollen lymph node would show up pretty easily by sight or feel.
They are just treating my whole neck to be on the safe said. "Going in for the kill" so to speak. I learned that term from Russ and a few other on here. However, had it been in a node I would have had radiation just like you did.
My neck is hot, it has a fever. But that front part actually hurts like rug burn, the rest isn't too bad.
Yours looks pretty healthy. But I didn't know if the camera and/or the lighting was deceiving. Your skin looks better than mine, thankfully.
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Wednesday January 19th Radiation Oncologist Check-up! Today he gave me the scope that I was supposed to receive next week (last week of treatment). He will be in a conference in Hawaii next week.
Hope everyone is well. Mine is looking good, especially what I placed in bold lower down evading my malignant lesion! Good news right now. Happy dance!!!!
So here's my write-up:
Squamous cell carcinoma of left vocal cord (HCC)
Cancer Staging: Cancer Staging
Squamous cell carcinoma of left vocal cord (HCC)
Staging form: Larynx - Glottis, AJCC 8th Edition
- Clinical: Stage II (cT2, cN0, cM0)
Site(s) under treatment: Larynx and nodes
Cumulative dose/ # fractions 5600 cGy/28fx
Planned dose/ # fractions 7000cGy/35fx
Concurrent systemic therapy: None
S:Increasing hoarseness. Significant erythema to treatment field worse anteriorly. Skin intact. Requiring oxycodone 30 mg every am, and 15mg every 6 hrs x 2 (total of 4 usually daily).
O:
Vitals - Last Recorded
1/19/2022
1328
BP:
129/84
Pulse:
67
Resp:
14
Temp:
98.2 °F (36.8 °C)
SpO2:
99 %
ra
Weight:
110 lb (53.1 kg)
Pain Score:
4
Pain Loc:
THROAT
GEN: NAD
SKIN: Brisk erythema in RT treatment field with dry desquamation
HEENT: No mucositis
Pain Management plan: continue current pain medicine regimen: controlling pain w/ Oxy 15mg 3-4x/day
ZUBROD Performance status 0;
Erythema over neck skin.
😍********Laryngoscopy shows tumor gone; cords w/ erythema but no lesions & mobile bilat.*********** 😍
A: Clin CR
P: Cont IMRT; skin care; oxycodone prn
Patient's educational needs have been met: Yes
Lorre Metts RN OCN
Patient Instructions
Lorre M at 01/19/22 1315
Patient instructed to avoid eating or drinking for 30 minutes post instillation of viscous lidocaine for nasopharyngeal scope..
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Steph,
You're getting close - 7 more rad sessions, and you're headed for recovery!
Great job!
Curt
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Hey guys. Last chemo today. Here's a video
https://photos.app.goo.gl/piieVWJXza2qJdFE6
I'm finished with chemo!!!!
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