Escaping Fear: How Radiation Therapy Masks Saved My Life
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- čas přidán 12. 03. 2022
- What is the radiation therapy mask and how does it work? In this video I discuss the mask, how it works and why it is so important. While a bit scary looking and somewhat claustrophobic, this mask is a critical tool in the fight against cancer and a successful treatment regimen.
I appreciate that you gave a timeframe for when you started to feel a bit less pain. Also, I appreciate that you told us what the pain felt like and didn’t sugar coat it so people are prepared mentally for the battle.
Unfortunately, there is no sugar coating it. It hurts. A lot. But it does end, that’s the good news!
Wow! I relate to so much of what you said!!!!
I know I shouldn't tout the wonders of medical fentanyl, but that made my experience of (HPV related) throat cancer way different than yours. About a month before treatment I had pain so bad that I was admitted through the ER locally, and then again in Dallas (an hour and a half away) where my cancer doctors were. The final remedy was 50mg patch of fentanyl that permitted NO PAIN BREAKTHROUGH. Doctors always asked me about pain at every visit, and I always told them that I had ZERO PAIN. As treatments progressed we decreased the dosage to 37.5mg, then down to 25mg, and by the last week of treatment, I was on 12.5mg. Three weeks later I stopped putting on the pain patch with no withdrawal issues.
I also had a feeding tube placed about a month before treatment because I was no longer eating. I had no appetite, I had lost my taste, and swallowing was painful. Before I knew it I had lost 40 pounds. I had to get on the feeding tube just to keep from starving to death.
The most devastating by-product to me is the lack of energy. I can't even imagine how anyone could continue to work through this process. I am just now (today) at my 3 month post treatment date, and I have FINALLY gotten my stamina back. I feel great!!!! I got my feeding tube out 2 weeks ago, but I am still drinking my nutrition along with sampling bits of food each day. Physical therapy has been a big help because I lost a great deal of range-of-motion in my right arm in this process. I had my throat scoped this week and my ENT told me (and showed me) that my right vocal cord is paralyzed which is why I sound very breathy when I speak and can't speak very loudly. There is a fix for this if it doesn't improve by the 6 month (post-treatment) mark. I'm not too concerned about this. If I had to, I could live with it - as is.
To all of you out there who are about to go through this process, keep your attitude up, speak positively, and give thanks to your nurses and doctors. And be grateful to your loved ones who are helping you through this rough time. It feels like crap, but 3 months after it's over, you'll have forgotten the horribleness of it.
I had my biopsy on May 18, 2022, began treatment on August 3, 2022, ended treatment (chemo and radiation) on September 22, 2022.
Hey Mindi,
Wow! Thank you for the response! I agree with you, stay as positive as you can, lean on friends and family, and trust the process. It is a tough road, but the result is certainly worth it.Please keep us up to date with your progress as far as your next scan goes!
Lee
PS - I agree, there was no way I could have kept working through this!
@@theregularguy141 I just had my post-treatment PET scan. All clear, no sign of the tumor!!! I am doing great, and still making progress. Hope you are progressing well.
Hi Mindy,
So sorry for the late response. That is great news about the post treatment PET! I know you are relieved.
Lee
R u getting shortness of breathe??
Hello, I was just diagnosed last week Friday 😕 I will be getting my PET and CT scans next Tuesday. I’m glade there is an option for pain management. Did that help you at all in being able to at least drink water? Or have soup? Ir is it still impossible.
How has your recovery been? You doing ok?
Just got the diagnosis. I appreciate you taking the time to make these videos. They are helping me and I'll bet they are helping others.
Hi Kelly,
I'm sorry you have gotten "the news". Let us know the treatment plan and when you start. We are all here for you and if you have any questions feel free to post them here or hit me on my email. It's in the bio.
Lee
Oh no! Have u been hoarse?
Oh wow, this is so so scary
I had my diagnosis in November 2019, I live in France so all of my treatments were in French with a bit of broken English. My French language skills improved during my treatments. The mask was the most scary thing that I have experienced in my life. The feeling of claustrophobia was huge, I ended up have panic attacks and had to have anti-panic medication. It’s the feeling that you are out of control. Together with the pains from the skin burns the last few weeks were very very hard. I had the chemotherapy in the same way but I also had immunotherapy which continued for 18 months. Following my 7 weeks of radiotherapy and chemotherapy the main tumor had been killed off but unfortunately there was a small ‘dark spot’ left which 2 years later started to grow so in January of 2022 I underwent a total laryngectomy and had my voice box removed. It’s now June 2023 and I have been clear for 18 months! My life has changed and I like the rest of us have had some very difficult times but I’m a survivor. I’m now as physically fit as I have ever been, I’m slightly different but life is still good.
Wow! That is an incredibly difficult journey you have had. You are truly an inspiration in that even a serious setback can be overcome. Your right, that mask started out as a terror for me, but I did slowly get used to it. Did you keep your mask? I still have mine. My wife wants to turn it into wall art of some type.
Lee
Which stage did you have
I’m 2 weeks post treatments. 7 chemo, 35 radiation. One thing that really helped me was exercising throat, tongue, neck everyday from week 1. I never needed a feeding tube although it would of been nice at times. I would mix boost with chocolate milk. 4oz each 6 times a day. Still lost 25lbs but it got me thru . I’m 10 days post treatments now and can eat soft foods already. Can’t taste much but it’s getting better every day. Pain in my throat has reduced by 50% and thick saliva is starting to go away. Listen to your speech therapist. The suggestion they give may seem like there doing nothing but it makes a huge difference at the end.
I remember my mask. I had two radiation sessions, each 45 minutes per day, for 30 days. I wound up with third degree burns on my neck that required some serious skin treatment. During my 3 month recovery after treatment, I lost my voice and had to use a small whiteboard to write down my messages. Since the last treatment 13 years ago up to today, hair no longer grows on my neck.
I didn't have any serious burns like you did, but I also didn't have the same series of super intense radiation treatments. Mine lasted about 15-20 mins,1 per day. I too have very little to no hair growing on my neck.
Lee
That's a real well designed mask. The one I had only covered the face.I took an anxiety med when I was doing radiation treatments so I didn't get coughing and could lay still for the 15 minutes. I no longer have to shave my neck. The radiation stopped the hair from growing there. I didn't have chemotherapy. But I did have a total laryngectomy surgery to remove the cancer. I don't have a voice box now or a thyroid. I am now a total neck breather. I can no longer breathe through the mouth or nose. I have a voice prosthesis to be able to talk. The strange thing is that the radiation treatments didn't bother me much and continued to eat by mouth throughout the treatments. I did have a peg feeding tube. For at least a week I couldn't eat by mouth due to the surgery. I had to learn how to eat again. I'd ask the nurse to bring a high chair and a bib. I had to laugh as you did to get through it all without getting depressed.
That mask was something else, I had to have two of them due to weight loss. I have a line of neck beard left, the rest is gone forever.
Lee
I was recently diagnosed with vocal cord cancer. I'm so afraid of the journey.
Hi Crystal,
I am so very sorry you are having to go through all of this. It is a tough journey, but one that I KNOW you can get through. Keep a positive attitude, a sense of humor, and rely on your network of friends, family, and medical staff to help you through this. Knowledge is strength. Ask questions and keep some notes. We are all here for you so please keep us informed on your progress. Reach out at any time!
Lee
Thanks for a wonderful run through of what you have gone through. I can tell everybody that you haven't sugar coated it and yes, everybody's symptons and treatment will be different. I was lucky in one way because although I was told that I would not be able to swallow and that I would lose my speech for a time....well, I didn't lose my swallowing power totally so I thank god for that because it has made it a lot easier on getting back to normal. I had 30 sessions of radiotherapy only over six weeks on my neck and tonsil area where the cancer had got into the nodes.....but a lot of what happened to you did happen to me. I am 3 weeks post therapy at moment....the soreness and ulcers in mouth are gradually going away but the lack of saliva and dry mouth are still with me which makes eating difficult at times and so I do resort to using the feeding tube in my stomach and the special bottles of food which have been supplied to me by the hospital. Your description of the mask is spot on...I am not claustrophobic but I hated it and especially when I felt the last click of the buttons which held you down firm for then that was the time I wanted to swallow the most.... so when the radiotherapy machine started doing its business I used to count the number of whirring noises it made and then I knew how far I was from being released again from the mask. Thank you and good luck to you for making the video and to everybody else who is going through a similar experience...YOU WILL COME OUT THE OTHER SIDE OK...BUT IT MAY TAKE A FEW MONTHS.
Thanks for the kind words and the endorsement Peter!! You are correct, you will come out the other side!
Lee
You're doing a job with your videos - informative, encouraging and indeed inspiring!! Thanks
I'm really glad you found them helpful! Forward them on if you know someone else who may benefit from them.
Lee
Thank you and your video is so accurate going through these same symptoms with my mom after all these radiation treatments.
Thank you so much! Good luck to you and your mom!
Lee
Well done Mr. Lee!! No doubt this will help many others.
Thanks Mason!
My husband just got done with his last treatment on May 22nd. He had an emergency surgery back in January just after diagnosis because they had to embolize a bleed in the tumor in the back of his tongue. Then he did 9 weeks induction chemo. (Three separate rounds) then he did 7 weeks of chemo/ radiation treatments. It’s been hell. You are giving me hope for him. He has suffered so much. They had to put in a trach which they just took out and a feeding tube that will be in for a while. He is still so sick:(
Hi Infinity,
I sincerely hope your husband starts to recover soon. This is indeed the roughest part, the three weeks post treatment, at least it was for me. The hard part for my wife was getting me to use the PEG (feeding) tube. I admit, I was hard headed, stubborn, and pretty grumpy (at best). Despite this being a very difficult part of the treatment process, it can be done, and he will recover. Just take it one day at a time. You are truly an important part of the recovery process as well. Both of you keep your chin up and keep us informed of your progress. WE are here for you!.
Lee
@@theregularguy141 thank you so much!!
really appreciate you recording these videos.. yesterday I was diagnosed with Oropharyngeal squamous cell carcinoma, and I'm up for radiation/chemotherapy much as you were, so I'm finding your thoughts on the matter very helpful
Hi Loz,
Have you had a PET/CT scan yet? Also when will you start treatment? Good luck going forward and don't hesitate to reach out.
Lee
Hi Lee, PET/CT is on Tuesday afternoon. haven't met the oncologist yet, so no start date, but they're getting me ready as I have the hospital dentist to see Tuesday morning. whew, busy day ahead, especially with only water to drink from 07.00am@@theregularguy141
I went through radiation therapy back in 2020. Mine was 5 days a week for 6 weeks. I was treated for adenoid cystic carcinoma
Forward to 2023 and I'm on painkillers for side effects in my trigeminal nerve on the right side of my face. More or less where my treatment targeted.
My treatment was done here in Victoria Australia at the Peter MacCallum Cancer Centre. Can't fault them in any way 💯 the best.
Right now I'm going ok 👍
Faith xx
That's great news Faith! I'm glad you are going well after 3 years. Did you have an annual check up scan? If so, was it PET/CT, CT, MRI, or ultrasound? Curious as to what scans people are getting post treatment.
Hey Lee
I've been getting follow up CT, PET scans and I had 1 MRI scan done in the years post treatment so far
I am going thru radiation with mask after surgery for ACC in my salivary gland. 11 sessions in. I’m still terrorized each time. How long have you been since diagnosis and treatment?
You’re in my thoughts. Hope you are doing ok.
I'm doing good Francine, Thank you!!
I am now 6 years out from my last radiation treatment. Your video is representative and excellent. Many will feel claustrophobic with the mask-don’t be afraid to ask for a prescription for anti anxiety medication to take before therapy. Talk to your doctor about having home IV hydration authorized and available. Do not get dehydrated!! Also have a discussion about a preop PEG they are difficult to place postop. I found a suction pump to be helpful at the bedside to deal with the copious mucus.
Great ideas and suggestions. You are correct about having the PEG put in before starting treatment. My gastroenterologist said the same thing about how difficult it could be after you start treatment. I never even though of a suction machine!
Lee
I got peg too
You nailed it perfectly! I, too, have cancer. I have 3 tumours in my throat.
Thank you for sharing your experiences. Wish I could have seen this 6 months ago, maybe it wouldn't have been so scary. It's been 2 months since my last radiation treatment and I still depend on my g-tube to feed. I cant wait for my first cheeseburger! Good luck with your PET scan.
Thanks again.
Thank you for the kind words! Please pass the channel on to others that you think may be interested in this. You should be closing in on that cheeseburger any time now.... FYI, it is glorious when everything comes back together and you get to actually eat. Keep us informed on the results of that PET/CT you have coming up. Is it still at the 90+/- day mark?
Lee
I was diagnosed today . Like a kick to the head 😢. I needed to see some information about what I will go through and your videos are so helpful and honest.....bless you x
Hi Diane,
Getting that diagnosis is truly difficult. I think I only heard about 3 words after the doctor told me. Keep us informed about your progress. I have found that the people in the community are quick to reach out and support one another. Let us know if we can help.
Lee
@@theregularguy141 thank you Lee
I can relate to the difficulty in hearing the diagnosis, I got mine on Valentine's day of this year, I have 5 more of 35 radiation treatments and one more of 7 chemo to go, I'm praying that it all worked and wasn't for nothing, my prayers for you both, Lee and Diane
Hi Diane, I got my diagnosis at roughly the same time as you. I had my mask fitting last Friday and start my 16 treatments on the 4th of July. Hope all goes well with you.
@@ladybluegrass4173 keeping everything crossed for you xx
I went through everything you did my friend and for me it's exactly as you said.The 2 or 3 weeks after treatment finished were the worst weeks of my life honestly its that bad.I had the nasel tube in before I got the peg tube in and being peg fed was better because with the nasal tube I was embarrassed to go out with people looking at me and getting out was so important for my mental health. I also had to get a second mask made due to weight loss.Thanks for the video's my friend its nice to see someone else's experience were the same as mine
Hi Doug,
Glad you pulled through it. I can't imagine that nasal tube being comfortable at all. The good thing about the PEG was that it never really seemed to bother me, except when it was being used and I messed up and got "liquid" meal everywhere.
Lee
@theregularguy141 yeah all good now my friend nearly back eating what I want,it's a hard road but with family and friends keeping you going it helps a lot.I had the very same treatment as you 7 chemo and 7 weeks of radiotherapy and I even had to get a second mask made up.Keep up the good work my friend I really enjoy the videos and I'm sure they will be a big help to anyone starting on this journey
I just finished watching this, Lee - virtually exactly to my experience. As of today, May 7th, 2023, I am heading into week 3 of recovery. It is and has been really tough. It's mucous that is so debilitating. For me, it will always be the mucous that is so disturbing. About the feeding tubes, you are so right. Unfortunately, I went the entire time without them and lost 50 lbs+ The reason I should have elected to have them put in is the lack of nourishment.
Due to not getting nourishment, it will take longer for my body to heal. On the flip side of that, my swallowing is strong. It is now two weeks post, and I can swallow with little to no discomfort. Now, I can swallow 4 or 5 times, and then I need to take a break. The other really difficult thing for me was sleeping. The mucous would not allow me to get sufficient quality sleep time. I am literally a walking zombie some mornings. Speaking of Mornings, those are the toughest times for me. If I do get two or three hours of sleep, the mucous will have built up in my throat, and it will be a bear to get it out. Plan on going into the oncology center and getting lots of fluids. Over the last two weeks, every day, including weekends. I feel a lot better after the fluids. Lee's approach to these videos is very helpful and truthful. If you are diagnosed, yes, this will be one of the hardest challenges you will most likely face. That said, thousands had proceeded you and come out on the other side better than when they went in - even the totally fit - which I was not - 50lbs overweight. You will have to dig deep for willpower to consume shakes and nutrition. We all drew the short straw, and feeling sorry for yourself will not be the right attitude. This is a real-life "Do Or Die" Good luck!
You are absolutely correct in everything you said. That mucous at the end was the absolute worst. The magic mouthwash helped, but was only a temporary fix. You are definitely on the backside of the recovery and should be seeing/feeling signs of improvement. Glad you came through!
Lee
My husband is heading into week three of recovery now. Has the mucus improved yet for you?
@One infinity greetings. To answer your question, YES! It is much, much better. My last treatment was April 21. The first 4 weeks afterward were so difficult. Starting week 5, I started eating chicken nuggets. I would pull tiny pieces and eat with water to help. Every day, it got better. By May 30th, I was eating steak. Today, it's still hurts but not enough to prevent me from eating. I rode my bike 5 miles... I found that if I eat a cracker, it would help with the mucous. The worst time was the mornings. By week 6 to 7 it will be considerably better....tell him to power through it and he will get through it. Hope that helps.
@@jonmichaels3113 Thank you so much for the reply. May 22nd was his last treatment. Tomorrow will be end of week two post treatment. He is having a really bad day today. He has vomited a few times and feels so bad. I wish I could take this suffering away from him.
I get it. My poor wife was where you are 3 weeks ago. For the first three weeks post, I went in for fluids every day, including sat and sun. If not getting fluids, go everyday! By the end of week three, there will be some relief. By the end of week 4 , even more. He needs to power through. He needs to add nourishment. This past weekend, I attended a formal black tie event and people were stunned how good I looked. 3 weeks ago, I was where he was..the worst is ALMOST OVER.....
I am doing 28 days, and only a week left. So far able to drink and eat a little. Well drink a lot. But it is sore. Nice video, thanks.
Thats great news Bobby, keep it up and stay positive! You are almost finished!
Lee
Thanks for the Video. I also have been diagnosed with HPV Tonsil cancer. I start March 20th at Fox Chace Cancer Center in Philadelphia. I have had no pain and would not have known if I didn't feel a bump under my jawbone. After the ultrasound, cat scan, and ENT visit for a biopsy - still no diagnosis after 2 months, I switched to Fox Chase. Within 2 weeks saw the Head and Neck Surgeon, had an ultrasound biopsy and had a diagnosis. Treatment 7 Weeks X 5 Days for Radiation and 7 weeks X 1 Day. They recommended that I use something called Healios; the nurse in radiation said she had 2 patients use this and had little problems with the radiation sores. She said it was created by a cancer doctor at MD Anderson Cancer Center to help his patients. I am hoping for the best, thank you again for the video, and I will update you on the Healios rinse. I start treatment on the 20th of March, 2023. Tom
Hi Tom,
Sometimes the swap over to a more specialized clinic can make all the difference. I shudder to think what would have happened had my ENT not had experience with head and neck cancers. I have heard nothing but good things about Fox Chase and MD Anderson. It sounds like you are in good hands! I used some stuff called Magic Mouthwash. I never even knew there was such a thing....
Lee
Good luck with your treatment Tom 👍
It’s a good thing u switched
@@theregularguy141 I am using magic mouthwash as well, it works really well. My story is strange and still a work in progress, just hope it ends well. On Feb 16, 2023, I woke up and my throat didn’t feel right, but I shrugged it off. On Feb 21, 2023, I went to the ER (I’m a Navy Veteran), and told them my throat burned and my voice was hoarse, I was diagnosed as having Pharyngitis. A few days later I went back to the ER and seen another ER physician and he diagnosed me with oral thrush. I wasn’t getting better, so after I finished my medication I went back to the ER and the same physician seen me, but this time he tested me for MONO, a few weeks later it came back positive! Now, it’s April 8, 2023, and my throat is on fire still and my voice is still hoarse. However, my primary care physician still is blaming my current symptoms on MONO. Here is what I suspect is going on -->I think it’s very possible I have throat cancer and it triggered the MONO test into a false positive. There is no way, even if I really had Mono, that my throat and voice would be like this after 7 weeks! I now have a CT scan next month of my soft tissue in my neck. My PCP isn’t listening to me when I am begging her to send me to ENT.
Hi Great video ! I had base of tongue cancer caused by HPV ! I had 6 weeks a radio and the pain after was indescribable ! I never left the bedroom for 3 months ! I lost nearly 3 stone ! I did have a PEG and that saved my life as no way could I eat for months ! I was on morphine every 4 hrs which helped a bit but not that much to be honest ! 1 year on and I still have no taste but I have put weight on ! the journey has been very very tough you cant sugar coat it the pain was horrific ! I have appts every 6-8 weeks where I have the camera to check all is clear and up to now it is but if I am unlucky and it does return I could not go through that again no way ! I was told I have a 90% chance of survival as it was HPV so my chances are really good !
Hi Rice,
For some reason it seems that HPV related throat cancer seems to be more treatable, I wonder why that is? Some thing to look into for sure. I sense another video!
Lee
I was diagnosed in the summer of 2020 with squamous cell carcinoma. My tumor was in the back of my throat under my tongue and I had to be fitted for a mask. My treatment was 6 weeks of radiation and chemo. I was told by the doctor before my treatment to have a feeding tube; because I’d have trouble swallowing food and I did. During my treatment I had to blend food to where it was like soup and put it down my feeding tube. I lost 70# during treatment but I’ve gained my weight back. Today I drink a lot of water because I have no saliva glands or no taste from the radiation and I’m in remission.
Great news on the remission! I agree that the tube was one of the most beneficial things for me although I did find the tube a bit small for blending soups etc. I'm glad to hear you are doing well!
Lee
My aunt came across your videos and boy am i grateful! Ive had 6 treatments so far with this horrible mask. I actually called my doctor and quit because its so extremely terrifying. However, after a talk with my doctor about "death" I guess i have no choice but start back up today. I have 24 more to go. I was in the hospital a couple days last week because it seems as though the chemo and where I'm being zapped has stopped my thyroid from working. I wasn't eating, but for the past 5 days, I've been eating breakfast, lunch, and dinner. I will be done with the mask new years eve. Now, i know we're all different but what do you think my likelihood of actually tasting food would be? Should i be able to taste food by February? Everything is so gross.
Hi Sparkle,
You're right, the mask is difficult. Unfortunately it is critical to properly aligning your body for radiation treatment. Since you are having trouble with wearing it, talk directly to the radiation technicians. the work with these things several times a day and they have some great insight on how to get past that claustrophobic feeling. As far as taste, I can only speak to my experience. For the first month where I ws actually able to eat, (about 4-5 weeks after treatment) food tasted like cardboard, all the same. Gradually my taste buds came back, but very slowly. I would say that I got approx. 80% of my taste back by the 6-8 month post treatment mark and that's where it has remained. Good luck going forward and let us know how you are getting along.
Lee
hey Sparkle. I 100% understand where you are coming from. I felt the same. I have just finished my treatment two days ago.
You can have the shoulders cut out if you need too. I had had mine cut out. I then moved to moving handles on the table.
Also, I found that educational on breathing. Understanding how breathing could control panic attacks. Then I bought books on panic attacks.
it's so hard, but you own this. That mask is your best friend. That mask will prolong your life.
I am thinking about you. Just coming this far, you have dug deeper than more people ever will I there life.
@@markhenry4146 Ty for the encouraging words even tho they were for someone else. Just had my mask made and tho it was hard to do the worst part for me was having an injured shoulder and pulling down on it with the band under my feet. I thought I’ll never get thru this. It’s tortuous. Maybe I can talk to them and there will be another way without pulling so much on my shoulder.
Update from me Lee. Had tonsillectomy and biopsy of the base of the tongue and all came back benign. Still no primary found which is not uncommon for 70% of HPV+ SCC. Since 2 lymph nodes are affected protocol is for chemo and radiation 6 weeks. Not looking forward to it but will get through to prevent recurrence and hopefully eliminate the primary. Going for a mask fitting next week, treatment to start April 10. Getting feeding tube in as a precaution as well but will likely need it from what I understand.
Hey Michael,
I had heard the same thing, that the primary can be extremely small and difficult to locate. The feeding tube was absolutely necessary for me. I wish I had started using it sooner than I did. Definitely start using it to get used to it before it becomes necessary. Check out my PEG Video in the link. Keep me updated on your progress. Good luck as you move forward and don't let it get you down!
Lee
czcams.com/video/7j743El4mg0/video.html
@@theregularguy141 already looked at all the videos and thanks for putting all of this together! Yes my oncologist stated she did not want me losing any weight, so PEG tube going in. She also stated I would lose the beard on the sides. I have seen other videos of you with a beard, has that grown back or no?
Yeah, they told me they didn't want me to lose any weight either. I ended up losing about 80 lbs. As far as the beard, It used to be a much better beard. She is correct. Part of it won't come back. On the left side of my neck from the jaw line down, I have nothing, smooth as silk. The right side of my neck is kind of patchy.
Lee
One of the toughest parts for me is the lack of taste of everything, I'm trying to get thru it without the feeding tube
Based on my experiences and knowing what I know now, I would go with the PEG tube again without hesitation. No pain, no issues. I would definitely manage my nutritional intake better though!
Lee
@theregularguy141 I agree...the peg tube made things much easier.
Thank you Sir, for sharing your experiences. Im getting my tube fitted in two days and start 6 weeks Radiotherapy in a week. And Im shi**ing myself !
During my Chemo, the only side effect I had was constant tiredness....I lost my taste and smell as well, but tiredness was my main issue.
I have tonsil cancer which spread to the lymph nodes in my neck.
Thank you again my friend.
Best Regards to you and yours from Scotland
Hi Thelain,
As far as using the "Mask", deep controlled breaths, and it's over before you know it. By the end of the 6 weeks you will be used to it indeed. I highly recommend keeping it and turning it into a piece of art. My wife and I are working on coming up with a plan for mine. Good luck in your upcoming treatment and PLEASE keep us informed.
Lee
Yeah , it's 5 years since my treatment finished , same as chemo+40 radiation blasts or Nukes as I call them, I was completely alone nobody to support me , the Hospital was 150 miles away so I stayed in a hotel near the hospital for 5 days of treatment and traveled home at weekends until that got to difficult and I stayed there the full weeks. It was also in the middle of winter. On about the 5th week I think I would have died in that hotel had it not been for on of the nurses who came to check on me and called a ambulance . Was it difficult treatment, Oh Yes ! was it worth it ? I'm Alive !!! and writing this 5 years later. Good luck to anyone starting treatment hang on in there , because you're worth it!!
Very powerful Jenny! I think many of us forget the nurses and technicians who work so hard for us. I'm glad you got through ok and you are still here 5 years later! I just hit year 3 post treatment and I'm still here as well!!
Lee
I had the same treatment as you this past summer.
Hi John,
When did you end treatments and how are you doing now?
Lee
Thanks for sharing, going into my second week and i not doing too well, the cisplatin is causing me issues, eating and constipation. lost 8 pounds and they weren't too happy about it, i need to watch your video of the tube, trying my best to avoid getting it, we shall see.
I have really hope you don't wait to long on the tube. The longer you wait, the harder it is to put it in. You need the nutrients! Let me know what happens
Lee
I just had the robotic surgery and will start radiation in 5 weeks. I am currently learning to swallow again and it sounds like I will need to again. Your videos have been so helpful. I cannot thank you enough. My question: do they give pain management? They have given me liquid meds after surgery.
Hi Sandra,
The robotic surgery sounds like that is the way to go if surgery is required. In answer to your question, yes. i received transdermal patches and pain pills. I am really glad that you found the videos helpful and the content was relevant! Please feel free to share the page. Keep us updated on your progress!
Lee
Great explanation! My daughter is about to go through this and we are wondering how long she should take of work. I’m thinking maybe the last 3 weeks of radiation and 3 weeks after. It would help to know how long you took off work. Thank you so much!
Hi Joyce,
Great question. My drive to work is approximately 1 hour 20 mins, each way. I made work for about 2 weeks and then threw in the towel for about 6-7 weeks. It will all really depend on your daughters job, her treatment regimen and of course how it effects her. The treatments are varied and the effect is not the same. I know some people who tapped out of work in week one and some who kept working all the way through. Let us know how it goes! I’m really sorry she is going through this, but it sounds like you are working towards a plan! My second video in the series talks about planning ahead for the treatment. HOW DID I SURVIVE MY THROAT CANCER TREATMENTS?
czcams.com/video/arFTXoWVEWQ/video.html
Lee
Thank you❤️. Going to watch it now!
Hi Joyce . How is your daughter doing ?
Great advice. we are all different. Someone who can though it previously said to me....your full time job is to get better.
Great video, great explanation!
I can say my experience was nearly identical to yours even down to not using the feeding tube soon enough.
I’m six weeks post treatment now and still can’t eat most things, I’m orally drinking the supplement drinks and eating things like jelly and yogurt but nothing solid yet. My energy level is still low and it tends to be a case of do one job and then have a sit down. My treatment was chemotherapy once a week and radiotherapy five times a week, both over six weeks. I return to hospital in two days time to the the results form my first full body CT scan post treatment so fingers crossed! Oh and the mask I found rather comfortable but I’d done scuba diving and wearing the mask reminded me of the scuba diving mask, I did get worried from weeks five because of the phlegm and stuff.
Yeah, definitely sounds almost spot on. I think the thing that got me initially was;
1. Not being able to open my eyes
2. Not being able to move
That was a surprise for me. The next time I wore it and was prepared (mentally) for the experience was not so bad. Please keep us updated on your progress!
Lee
@@theregularguy141 hi Lee, well I went to my appointment thinking I was getting an update on my cancer from the CT scan but it turns out I have to wait about five months to get a clear picture if I’m in remission,very disappointed but such is life.
I’m about seven weeks post treatment and still can’t get my energy back up, I’m struggling with the supplement drinks now and might need to go back to the feeding tube, I’m supposed to be having it removed in about six weeks.
My hearing has seriously deteriorated in my left ear and it feels like I’m under water, apparently this is a side affect from the chemotherapy and it might not get better, I’m getting dizzy spells when I stand up and I’m not sure if that’s related to my hearing knocking me off balance or not having enough supplements. Have you any side affects from the treatment?
Hi Mark,
Oh man, what a disappointment! I went 13 weeks fore my past treatment PET and it was 2-3 weeks after that when I got the tube out. My gastroenterologist wanted to wait until i got a clear scan before taking it out, just in case more treatment was necessary, he didn't want to have to put in another hole. I was using a mix of the feeding tube and supplement drinks as I slowly got to the point of being able to actually eat. I do know that it's better to wait longer for the PET than to push it early. The radiation is still cooking away for several months and that will show up on your PET as a positive for cancer. I pulling for you! Let us know how it goes.
Lee
Thank you for sharing your treatments. I was diagnosed with cancer of the vocal cords.
Q--Did you work during your radiations treatments. ?? I work in construction. Very physical. 10-12 hrs a day 5-6 days a week sometimes.
I worked for the first 2 weeks then took vacation and sick leave. I can't imagine having to work through the entire treatment process. Man, that had to be tough!
Lee
@@theregularguy141 thank you very much for your response. 👍🏻
I’m supposed to have a mask made and I’m so nervous and claustrophobic how can I get past that they may need prescribe me something everytime
Hi,
Make sure you communicate that to the technicians when the form your mask and before treatment. There are some drugs that they can administer to help you relax, but it is crucial that you let them know how you are feeling. The technicians in my case really did a great job talking to me as the treatment was going on and also playing some music. That may help.
Good Luck and let us know how it plays out!
Lee
I had left sided hpv16 tonsil cancer. 7 weeks radiotherapy. 3 high dose cisplatin. Stopped eating food about 4 weeks in. Didn't eat solid food by mouth for another 2 months. Drank the protein drinks 4 to 5 a day during that time. Didn't have a peg as most of the radiation damage was left sided roof of mouth. Pain started around week start week 4 after second chemo. Taste was gone by then and permanent dry mouth and raw throat. By the end pain was pretty bad but was really fatigued for the month following treatment. The mask is quite difficult to deal with and gave me a lot of anxiety. The far and away most painful part was radical tonsillectomy 6 weeks before. treatment. Am now 15 months after treatment and around 85% of functions like taste, dry mouth etc are restored. It's a tough road but it's doable and pretty good long term resolution. Do have permanent tinnitus and hearing loss but its not really too bad. Muscular aches and pains in mouth and jaw , neck area. Best of luck and hope for your long term good result.
That Cisplatin does do a real number on you. I do have some hearing loss, but no tinnitus. My taste and and dry mouth are about the same, 85% ish. I hope you have good results in the long term as well!
Lee
One thing I can add that helped during time in the linac clamped down. I tried to slow my breathing and counted to 5 breathing in and then back to 0 while again counting. This helped to stop your mind racing etc. It didn't matter if my count got out and it got muddled up I just kept counting and tried to breathe slowly. I hope this little advice may help someone. And agree the making of the mask is the worst time in it.
@@sninstall Great advice! I also concentrated on keeping my eyes closed and breathing. Thanks for the advice!
Lee
I received 3 chemo treatments thru a port in my chest which they had surgically installed. I was supposed to have 5 but my blood count went outta wack so they stopped. My mask for radiation was tight, no doubt about that. I have a rather funny story about the mask and my first treatment. I'll share that later.
I have heard about the semi-permanent port process. How uncomfortable was that? I would imagine it is a lot like the PEG tube, just smaller. My blood work went out of limits as well for a few days and we had to hold off on one of the chemo treatments until it was back in order. I'm looking forward to the mask story!
Lee
@@theregularguy141 it's not uncomfortable at all. it is about the size of a quarter. Maybe a 20 min procedure to have it put it and same for removal. You apply lidocaine the morning of procedure. You don't feel a thing when you're connected.
@@imlurking9103 That's cool. Kinda wish I had one of those for my chemo. Towards the end it was really starting to hurt when they put the cannula into my veins. Of course my veins were getting harder to hit as I lost weight etc.
@@theregularguy141 how much many more treatments do you have?
@@imlurking9103 I completed treatment on September 08, 2021. I JUST had my 1 year scan about 2 weeks ago and still clear of the cancer.
I am extremely claustrophobic.
I repeat, extremely. I had the mask fitted last week. I barely made it through that experience. I am scheduled for my first radiation treatment in 2 weeks. I don't think I can do it. I'm at the point now that I feel the need to cancel the treatment. I don't know what to do. I'm 62 I live alone and have no family left.
What now?
Hi Bob,
Go ahead and email your oncologist and describe your situation. You are certainly not the first one to have a severe reaction to the mask. They can and will prescribe you something to help you relax if necessary. The fact that you made it through the fitting is a good first step. The treatments in my case were shorter than the fitting. I believe the fitting and scan took about 30-35 minutes ish and the treatments were 10-15 mins tops. On the day of your first treatment make sure you emphasize how claustrophobic you are to the radiation technicians. Their experience is priceless to help you get through treatments. There were several times where they simply talked me through the process when I feeling like me and the mask were NOT going to get along that day. I would also encourage you to reach out to support organizations and groups to get some assistance. I hope this is helpful and keep us updated on your progress!
Lee
American Cancer Society
www.cancer.org/support-programs-and-services.html
Support for People with Oral and Head and Neck Cancer (SPOHNC)
spohnc.org/
Cancer Care
www.cancercare.org/diagnosis/head_and_neck_cancer
@@theregularguy141
Thank you so much for your reply.
Just the fact that somebody heard me certainly makes a difference.
Thank you for the added information
@@bobmarrier4374 No problem Bob, I try to get answers out as soon as I get a comment and I'm not always a roaring success at it, but I am listening as are others. I would encourage you to reach out for support to the different organizations and get some face to face time with someone as well. A bit cliche, but it has to be said, you have got this. Keep a good positive attitude, and come up with something to make you laugh every day.
Lee
How are you now? Have you beat your throat cancer? Did any of your teeth 🦷 get loose?
Hi Katina,
So far so good, I had my annual scan (MRI) last month and was all clear. As far as my teeth, yeah, the teeth on the left side lower jaw loosened up slightly, but that went back to normal pretty quick.
Lee
@@theregularguy141 I am so happy to hear this, YAY! You have been thru what I would call a life altering journey, one that will stay w/ you for life. You are fortunate in that you lived to tell your story and educate others!
What stage did your neck swell?
From day one there was swelling in the lymph node, much larger than I had seen before. I could see and feel it.
@@theregularguy141 ok, see I didn’t have any swollen lymph nodes, not even w/mono and I never had a swollen neck like you did, so there is no way I have throat cancer.
Just had my mask made last Thursday and radiation will start 11/29/23. Is am told my treatment wiil be Monday to Friday for five weeks. No chemo but not looking forward to problem with swallowing. No one mentioned tube feeding for nourishment. It is just a short period of time out of ny 80 year old life.
Hi Sali,
Ask your oncologist about getting a consult with a gastroenterologist regarding a PEG tube. It is a quick and easy procedure to put it in and remove. My gastro doc told me that it due to throat constriction it could be extremely difficult to insert the tube after treatment starts. Good luck on your upcoming treatments, I hope they go smoothly!
Lee
Did you use Healios at all?
No I didn't, I admit I had to look it up to see what it was. If you are in treatment I would definitely clear it with your doctor prior to using it just as I would any supplement. After just my brief read on Healios I would think that there would not be any issues.
Lee
I’d like to know more about your mental health, and what I mean by this, was there ever a time you said, well … if only the doctor ran more tests they would have caught it earlier or, did u ever get upset about time wasted by being put on antibiotics?
The short answer to both is no, not at all. I was convinced, in the beginning, that it was a nasty ear/throat infection. There was no indication of there being cancer. The second ultrasound gave me an indication that things were not normal as the ENT felt like the lymph node had gotten larger and had not reduced as it should. She then ordered the biopsy. That was the telling point. So, no. I was never upset at the doctors or the plan etc.
@@theregularguy141 ok then, but I don’t understood how it got to stage IV when it was diagnosed. If u noticed your neck being swollen, husky voice from day 1, it never should have progressed to the end stage like it did.
THIS IS BSICALLY WHAT IM GOING THRU
Ahhhh.... "The Mask" spoken in my scariest Vincent Price voice... Are you on the first or second mask?
i think i stay with this mask im 3 1/2 weeks into chemo and radiation i was told that my pain may not get worse that it may stay as it is now .but it sure sucks
I got mask 2 at the start of the 5th week. I lost so much weight that the mask was not holding my head still enough for the treatment. How are you doing now? I think you should be finished with your treatments?
Lee
I had this treatment and would rather suffer the consequenses than ever wear that mask again. Total nightmare over 20 treatments.
I'm a little claustrophobic, so despite the great instructions by the technicians, I was very uncomfortable getting the mask fitted and then the first few times using it in treatment. BY the time I was on my second mask, I was a lot more comfortable with it. All that being said, I will disagree. I would rather wear that mask 100 times than have that nasty disease in my throat again.
Lee
Ive had the mask to it feels like TORTURE
It did for me as well, at least at first, then I just got used to it. As I lost weight it was of course getting more loose so of course I had to get mask no.2 (Ughh). Google search radiation mask art. My wife is working on a plan to transform my mask into something artistic.
Lee
I hated the mask....and hated the radiation treatment
I think I got used to the mask after the initial discomfort, but yeah, the radiation was tough, very tough.
6 years post treatment stage 4 head / neck cancer. Surgery Chemo & Radiation....to me Radiation was the worst...could not eat and peg tube was my savior too! Things do slowly get better...took about a year for me to get back close to normal. Rough road but it does get better eventually. 😊
6 years post treatment! That's great news! Gives a hope to those of us who are post treatment "newbies". It does take a bit to recover, but well worth the effort!
Lee
Oh my God, this is so great to hear, my 57 year old brother has been diagnosed with Stage 4 Terminal. Starting Radiotherapy today. After that Chemo. And maybe immunotherapy after depending on how the first 2 treatments work. Please pray for him. He has the Trachea and the Peg Feed also. I am devastated to say the least. He told me yesterday the extinct of it. Spots on his liver but thankfully his lungs are very good. Sick with fear. Please support me with some hopeful words or experiences.