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Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

chanderson | @chanderson | Feb 22, 2023
In reply to @hrhwilliam "Radiation treatment to the neck will usually be tolerated in the initial first few weeks. But..." + (show)
@hrhwilliam

Radiation treatment to the neck will usually be tolerated in the initial first few weeks. But as time goes on, the effects can and usually do cause issues which must be delt with as they arise. Initially most folks lose their taste, perhaps saliva issues, swallowing issues, and just general eating issues altogether. Personally after my experience, I would not go again without a feeding tube by the third week. As much "fun" as a feeding tube can be, there is not really an alternative to getting your nutrients.
The last two weeks of treatments seem to hit most of us the hardest and perhaps surprising is the fact that he will continue to go downhill for usually two weeks before recovery begins. The effects of radiation are cumulative. Radiation "sickness" is real to many of us during those weeks. And by recovery I mean slowly, two steps forward and one step back.
This is a battle he must commit to, a battle he must fight, and a battle most of us have won. Hard as it may be, the alternative is not forgiving.
We are here for you and your husband. You can also contact any of us privately by clicking on our names. Good luck and good fight. He may not believe it but in the long run this one event may just change his life for the better. And for you, remember, life is what happens when you're making other plans. Let him be grumpy. Let him deal with the unexplainable. It will be OK.

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I completely agree with this feedback and had the same experience with my diagnosis. I can’t stress enough getting the feeding tube early. I didn’t get my feeding tube until week 7 and it was really an emergency for me based on my weight loss and overall health. I’m the end the feeding tube stabilized me as I went through the beginnings of post treatment recovery. Please reach out if you have additional questions. This is an incredible group of people here to support.

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RW | @nbkod7b | Feb 23, 2023
In reply to @thomason "@nbkod7b, not being able to open your mouth is horrible. The exercises they gave me to..." + (show)
@thomason

@nbkod7b, not being able to open your mouth is horrible. The exercises they gave me to do did not all involve opening the mouth. Some were just using the muscle we use to swallow, trying to pretend to be swallowing about 20 times, twice per day. Another involved lifting the tongue to the roof of the mouth, then moving it from side to side (inside cheek to cheek). Then, rotating the tongue in a circular motion over and over. Many did involve opening the mouth. One thing that greatly helped with my neck and chin Lymphoma was one of those vintage, electric neck massagers. Here is a search title that shows one on eBay:
"Homedics Shogun Shiatsu Kneading 2 Way Neck Head Massager Portable SM 444."
Another suggestion would be "Red-Light Therapy." This healing light helps many conditions if utilized consistently. Did you get the lymphoma from radiation treatment? Have you tried any type of therapy for your condition, such as massage? Is this temporary? Sometimes, time will heal these things. It was over one year before my voice came back. Also, the speech therapist did not want my feeding tube removed, but it fell off me. I then became determined to rev-up the exercises, massages, red-light, and with time it did get better. Please keep me informed of any progress. Best of wishes.

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Thank you for your response. I'm not able to swallow but I will try the swallowing exercises since that helped you. I can't move my tongue which happened after I started therapy which included the tongue exercises you described. That was before I was diagnosed with lymphoma which was the reason for radiation. The Drs hoped radiation would shrink the tumor and allow my mouth to open so they would be able to see what was going open but that wasn't the case. I have a face massager and will resume using it. I gave up on it as nothing seemed to be hapoening. I will look into red light therapy. I will try anything that has worked for someone else. That is why I so appreciate you taking the time to respond with your experiences and suggestions. Thanks again and best wishes for you.

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thomason | @thomason | Feb 23, 2023

@nbkod7b, I am not trying to lay my beliefs on you when saying that one day our bodies will be renewed in a spiritual realm.
Time is going so fast. Although your situation sounds unbearable, please know you really are in people's thoughts and prayers.
Hang-onto that hope, please.

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RW | @nbkod7b | Feb 23, 2023

Thank you for sharing that. I am thankful to my Lord and Saviour Jesus Christ for each day.

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rubagaddal | @rubagaddal | Mar 21, 2023

Hello everybody here!
I wish all the best for you all brave cancer survivors.
I am diagnosed with stage II SCC of tongue May 2022. operated on the same month. I underwent a subtotal glossectomy, all neck lymph nodes dissected, and a tongue reconstruction was done with a flap from my breast.
the post operative phase went fine, NGT tube removed after 45 days and I started taking oral fluid diet.
After two months I received 30 sessions of radiation.
My suffering starts when I discovered that there is a defect beneath the tongue where food particles went and lodged there. It is very annoying and painful, I try my best to clean this pocket, but still some tiny particles stay there.
After radiation therapy I developed a mild neck lymphedema, but now I am fine, it is not progressing (Thank Allah).
The first MR image seems to be assuring.
Three weeks ago, I did A PET Scan, and it shows a cyst on the left Jaw, and two small lung nodules.
We are seeking different Professional opinions since some regard these nodules as suspicious, and others think they might not be that bad, and advised us to wait for a while and repeat the PET Scan.
We are waiting the opinion of the oncologist.

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1 reply
shielashepperd | @shielashepperd | Mar 23, 2023
In reply to @thomason "Hello @michelleandrupert, Welcome! I am sure you wish to not be a part of a group..." + (show)
@thomason

Hello @michelleandrupert,
Welcome! I am sure you wish to not be a part of a group of people diagnosed with head and neck cancers. However, we are all in this together. Your husband is fortunate to have you as his advocate. My cancer was diagnosed in 2018 in the throat by the vocal cords. After 35 radiation sessions, I lost the ability to talk, eat and drink. On the bright side, after having speech therapy (exercise of throat muscles) it all came back very slowly. If it were not for the treatment, I would be long dead. I utilized a red-light wand every single day before the radiation treatments. Whether it helped, is anyone's guess. Keep laughing, loving and living. Like everything in this life, it is just a passing happening. Your faith will see you through.

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Thank you your post. I have just finished treatment for state 3A HypoPharnyxgeal cancer. 2 lymph nodes. Locally advanced cancer. Non surgically treatable due to size and location. I have never met anyone as of yet with the same diagnosis. Ones that have the same are also HPV positive which gives them a better prognosis. I never smoked but I did drink, for a period of 10 years. I did have breast cancer 15 years ago ( stage 3b). I had the works then including radiation to the chest which a theory lingers that this is what might have caused this cancer. I am a 57 yr old female. Good health ( besides the C's ), exercise and active. I am 3 weeks out from my last radiation. Speech is trying to come back and swallowing slowly and carefully but signs are there that things are recovering. My concern is really did I get this? We'll never know but if I could hear back from someone with a similar diagnosis and find out their prognosis and tips and tricks, I would love this. Thank you for reading my post.

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apple32 | @apple32 | Mar 23, 2023

Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by an ENT for a few months with initial symptoms of a clogged left ear and those symptoms grew to excruciating pain which mimicked TMJ on the left side of his face, pain in his left ear and then numbness on the left side of his head and face. He was unable to eat and lost about 20 lbs. in the process. By the time he had a MRI on 12/30, they found a mass that was eventually staged as 3/4A. He is currently undergoing the initial 3 chemo cycles and set to begin radiation next month and continue with chemo once a week. We have had a few treatments delayed due to low blood counts as well. He no longer has the excruciating pain, but has not regained the weight, but is able to eat. He is also fatigued most days and having the typical chemo side effects after treatment. He is expected to have a PET scan at the beginning of April. Just curious for those of you who have had/currently have this diagnosis, did you see significant shrinkage of the mass on the first scan following treatment? Just curious since the pain is no longer, should we expect to hear some good news. We understand, regardless of what the scan shows, he’ll still have to undergo the 35 radiation treatments. The doctors have told us about all the side effects that he can expect as a result of the treatments. Also for those of you who have experienced radiation for this type of cancer, curious if these side effects are as bad as they are projecting? Were you able to work going to treatment daily? Thank you for any input you have. This is all so very new to us, as I’m sure it was to all of you. We are honestly still processing and trying to learn as much as we can. Thank you.

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shielashepperd | @shielashepperd | Mar 24, 2023
In reply to @apple32 "Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by..." + (show)
@apple32

Hello Everyone. My husband was diagnosed with nasopharyngeal cancer on 1/1/23. He was being seen by an ENT for a few months with initial symptoms of a clogged left ear and those symptoms grew to excruciating pain which mimicked TMJ on the left side of his face, pain in his left ear and then numbness on the left side of his head and face. He was unable to eat and lost about 20 lbs. in the process. By the time he had a MRI on 12/30, they found a mass that was eventually staged as 3/4A. He is currently undergoing the initial 3 chemo cycles and set to begin radiation next month and continue with chemo once a week. We have had a few treatments delayed due to low blood counts as well. He no longer has the excruciating pain, but has not regained the weight, but is able to eat. He is also fatigued most days and having the typical chemo side effects after treatment. He is expected to have a PET scan at the beginning of April. Just curious for those of you who have had/currently have this diagnosis, did you see significant shrinkage of the mass on the first scan following treatment? Just curious since the pain is no longer, should we expect to hear some good news. We understand, regardless of what the scan shows, he’ll still have to undergo the 35 radiation treatments. The doctors have told us about all the side effects that he can expect as a result of the treatments. Also for those of you who have experienced radiation for this type of cancer, curious if these side effects are as bad as they are projecting? Were you able to work going to treatment daily? Thank you for any input you have. This is all so very new to us, as I’m sure it was to all of you. We are honestly still processing and trying to learn as much as we can. Thank you.

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Thank you for your post. I am very sorry to hear about your husband. But he is lucky to have you as his advocate taking initiative to get information to cure him. I am actually a couple months ahead of your husband. I have Hypopharnyxgeal cancer stage 3a. Locally advanced. I also had Breast cancer 15 years ago. I can tell you breast cancer was so much easier to navigate than this. Mainly because there are many resources and awareness for BC. I finished my radiation 3 weeks ago. Cisplatain+35 rounds rads. No surgery. HPV negative (if you are + you are in luck). The treatment is like they say it is. Keep him active and do everything your doctor tells him to do. Keep his weight on with shakes and thick soups as long as possible. Also do the exercises. If they have not told you then ask or google them. 3 weeks post treatment my voice is coming back, I am eating & swallowing carefully and slowly. My radiated skin is peeling and I see new skin. No pain but I just have a cough that comes and goes. But that's fading too. My scans in May, so I too am nervous about my outcome. I am 57 years old, female, with kids in college.
I have many years planned ahead. I would love to meet someone in my situation, HPV negative, to tell me if it worked. For now I pray, exercise, eat healthy, and get hydration regularly. I finally having lunch with friends for the first time in months although I'll be whispering. I will post my scan feedback in May. Best of success. Feel free to reach out if you need anything. God Bless.

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apple32 | @apple32 | Mar 25, 2023
In reply to @shielashepperd "Thank you for your post. I am very sorry to hear about your husband. But he..." + (show)
@shielashepperd

Thank you for your post. I am very sorry to hear about your husband. But he is lucky to have you as his advocate taking initiative to get information to cure him. I am actually a couple months ahead of your husband. I have Hypopharnyxgeal cancer stage 3a. Locally advanced. I also had Breast cancer 15 years ago. I can tell you breast cancer was so much easier to navigate than this. Mainly because there are many resources and awareness for BC. I finished my radiation 3 weeks ago. Cisplatain+35 rounds rads. No surgery. HPV negative (if you are + you are in luck). The treatment is like they say it is. Keep him active and do everything your doctor tells him to do. Keep his weight on with shakes and thick soups as long as possible. Also do the exercises. If they have not told you then ask or google them. 3 weeks post treatment my voice is coming back, I am eating & swallowing carefully and slowly. My radiated skin is peeling and I see new skin. No pain but I just have a cough that comes and goes. But that's fading too. My scans in May, so I too am nervous about my outcome. I am 57 years old, female, with kids in college.
I have many years planned ahead. I would love to meet someone in my situation, HPV negative, to tell me if it worked. For now I pray, exercise, eat healthy, and get hydration regularly. I finally having lunch with friends for the first time in months although I'll be whispering. I will post my scan feedback in May. Best of success. Feel free to reach out if you need anything. God Bless.

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Hi @shielashepperd thanks for your response. So glad to hear you are making excellent progress, post- recovery! That is inspiring. Yes, I hear this cancer is much different than others. Praying for good test results for you in May and please share. He has one scheduled on 4/2, right before getting fitted for the radiation mask. Thank you also for the tips. I’ll be on the lookout for your results in May.

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