ssc, hpv in tonsils on both sides and eblarged lymph node

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  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member

    Steven, I am glad you are hashing this over in your mind and one day all this will settle out and you will find a place of comfort and peace.

    One thing you said caught my attention "This last year has been a marathon with traces of anxiety that all the work would be for nothing and the C would just return".

    We just put that thought out of our mind as far as C returning. It's not impossible but generally and hopefully not. But if so it's another battle and I always say no matter what don't give in to cancer and defeating thoughts, fight it with every strength and breath you have, NEGU (Never Ever Give Up).

    This reminds me of Ken Curtis. Ken Curtis, one of America’s most talented Christian moviemakers who specialized in featuring the stories of early Christian pioneers through an amazing collection of feature films fought a rare cancer, and made films during his journey. He is very inspiring and I have a couple of quotes from him.


    Ken Curtis Quotes


    One day I woke up dreaming about going back to the time before I had cancer.

    And then I realized I did not have to give cancer more than it’s due.

    Because cancer’s like a wicked thief that broke into my house to find money,

    jewelry, and other valuables.

    But that thief misses so much.

    My books, my pictures, my written journals in which I preserve cherished reflections,

    these the thief leaves untouched.

    They’re some of the most precious valuables.

    And I came to realize that there are things in life that cancer simply cannot reach.

    Maybe it can ravage the body, but it has no claim on the soul.




    Ken Curtis


    And this is the place I’d like to say how appreciative I am for a man who showed me

    that goodness and love does follow us.

    He could have looked at things differently, he could have become very bitter.

    His uncle had saved up to put him through college, but as a youth he thought he knew it all.

    He left school when he was 14, and later went back to school nights and self-educated himself.

    He was fortunate to get a good woman for a wife, but they lost their first child Billy

    when he was only 8 years old when he got hit by a New York to Boston express train.

    Then in her prime his wife died a prolonged death from cancer.

    To pay for the medical bills he got involved in a business that went broke.

    And then he lost a second wife to cancer, and I could go on and on.

    He did end up as an officer in a major corporation and did work until his mid eighties.

    But the setbacks that he experienced never made him cynical.

    Every single day of his adult life he began on his knees giving thanks to God.

    In the midst of all that life threw at him he still knew and found that goodness and love

    followed him.

    And I know this is all true because that man was my father.


    Ken Curtis


    After fighting cancer for over eight years, Ken says, “I have been privileged to live an unusually full life. I have had extraordinary blessings, travels, opportunities, ministries, freedom, and honors, so, in all honesty, I do not feel like I can in good conscience ask for more. I am content to leave it in God’s hands. I am a servant of a faithful master whom I trust more than I trust myself. Surely goodness and mercy have followed me and I will dwell in the house of the Lord forever.”

    His inspiring movies for cancer people were...


    And...


    And...


    Even in his 8-year fight with cancer, he kept producing films to help others. At the time of his diagnosis, he was given less than a year to live but amazingly he stretched it out to 8 years and made the films with his son. His fighting will to beat cancer is an inspiration to all of us.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • steven59
    steven59 Member Posts: 102 Member

    wbcgaruss.

    I dropped a 1 year update trying to briefly post the realities of my recovery. I don't live in my head hashing things over, I posted that I go on 400+ mile adventure motorcycle day rides, gravel and trails. I think it's normal to go thru surgery and radiation, the months it takes to eat normally again and say to yourself, I really hope all this BS isn't for nothing, yes? Then I post that instead of letting my head go down a dark path I focus on the therapy to aid healing. I've read bits of your story and see you've had more than 1 encounter with cancer treatment and I appreciate and respect everything you do for us here. I guess that's why I want you to know what my update was and know i'm not lost in my head or dwelling on the scc, I'm not. I am trying to share and offer support here when my inbox alerts me.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member

    Steven, I understand.

    I may have over-commented, which I tend to do.

    Which may have given you the idea that I am taking a wrong angle on this.

    Believe me, I appreciate your stories on your cancer journey and updates and getting back to life after cancer.

    In no way do I think you are lost in your head or dwelling on the SCC. No way.

    You are sharing helping and supporting others with your experience.

    I probably came across the wrong way with the way my response was worded and as I said I get exuberant about hearing people's success stories and talking with them about it.

    With all that said...

    I would like to sincerely apologize to you for giving you the wrong impression with my response and please continue to help us with your experience.

    Everybody has a story and everybody is important.

    Take Care, God Bless

    Russ

  • GarlandCan
    GarlandCan Member Posts: 27 Member

    I am starting radiation soon and am so worried about the mouth sores. I haven’t even fully healed from surgery! I have oral cancer on right side, 7 teeth removed, hole in roof of mouth to sinus cavity and wear an Obturator. I don’t want a feeding tube either. I’ll do anything to avoid it. Prayers for you and everyone here. This is hard.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member

    Hello Garland, and welcome to the CSN H&N discussion board.

    Garland, it is hard, the hardest thing any of us have ever faced in our life and you can include me in that category.

    First off you have not even started radiation yet let alone gotten any mouth sores. So I would say deal with mouth sores if you get them which you may not, not everyone does.

    You have had your difficulties like many of us but you must be very strong to face this situation the way you do.

    Do not worry ahead of what might happen but deal with things as they come and lean on your care team, they are there for you to get you through anything you encounter.

    Just in case you do get mouth sores I will post recipes below of the salt and baking soda mix to rinse and help with them and help you feel better.

    I will also post a link to an article telling you all about them and explaining what to do.

    I know it is upsetting and worrisome to be going through more treatments like radiation and you say you are not healed completely from surgery. But I think your care team knows your case and feels that it is OK to go ahead with this treatment and eradicate your cancer. Radiation is used to mop up errant cancer cells which could not be seen at the surgery. Radiation will kill any remaining cancer at the cellular level. Think of microscopic sizes like you need a microscope to see them. Some may be where it would be hard to get with surgery but radiation can cover the area and get them.

    Feeding tube...

    Here is another thing you are looking ahead to and thinking about when you may not even need one.

    One last thing I see you definitely don't want a feeding tube but sometimes the situation we are in makes it unavoidable if we want to live. And even if we can get through without a feeding tube you may manage to do it but suffer greatly in the process. I am a big pro feeding tube person and I always tell people if your care team recommends one get it, they know your case and have treated many similar people and they know what is needed and works best. Also, keep in mind that a feeding tube is just to get you through a tough time and is only temporary. Believe me, it makes this difficult H&N treatment much easier if you need one. It helps you maintain your weight and take in much-needed hydration and medications.

    Also, I personally leaned on my care team if I had problems and through the whole thing Trusted and leaned on God and prayed a lot and read many Bible verses that gave me the hope and encouragement I needed and they are easy to look up nowadays by subject and category on the net.

    You are very strong and courageous to have gone through what you have faced so far so I know you will be able to do the rest of your treatment plan. I know how difficult it can be and the end of treatment seems far away but trust me, taking one day and one treatment at a time before you know it you will be surprised how fast it will go by.

    Our Motto on here is NEGU (Never Ever Give Up)

    Below are the salt and baking soda mix recipes and the link to the page for dealing with mouth sores if you happen to get them.

    Wishing You The Best

    Take Care, God Bless

    Russ



    Coping with mouth sores from cancer treatment




    Salt and Baking Soda Rinse Recipes


    Soda and Salt Mouth Rinse

    1/4 teaspoon baking soda

    1/8 teaspoon salt

    1 cup of warm water

    Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.


    Soda Mouth Rinse: A Good Rinse for Before You Eat

    1 teaspoon baking soda

    1 cup of warm water

    Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.


    Saltwater Mouth Rinse

    1/4 teaspoon salt

    1 cup of warm water

    Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.


    Salt and Soda Rinse for Gummy Mouth

    Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

    1/2 teaspoon salt

    2 tablespoons baking soda

    4 cups of warm water

    This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

  • GarlandCan
    GarlandCan Member Posts: 27 Member

    Thank you so VERY much for your reply. This process can feel so lonely. I do have my husband and kids, but I mean lonely in the sense of roller coaster of emotions and difficult thoughts that pop in your head. Thank you for reminding me to take it one day at a time. That is so important. Im going to make myself a sticky note or 2 and post around me to help me remember that. Your reply has given me more information than anyone yet has taken the time to explain. My 2 care team members are great and were very kind and sweet with the mask fitting process. So I do know they will be great. Im just scared honestly. Another thing I know we all must feel. I pray many times a day. God is so good 🙏🏻 I know he helped me through surgery. My first surgery was 8 hours long and I developed a hematoma and had to go back to surgery which lasted 4 hours. During that surgery I stopped breathing but God was there and he pulled me through 🙏🏻 I was in ICU with wonderful nurses and one is now a forever friend. I think God sends people, like you, our way to help us through the storm. Earth angels I call them and I think you are one as I’ve seen how many people you have helped on this difficult road. I thank you so much my friend. Just talking to someone who has gone through it helps me SO much! I’m crying at your kindness 🙏🏻

    I have copied all the recipes for possible mouth problems.

    Thank you, Thank you, Thank you.

    May God continue to bless you Earth angel 🙏🏻

    Kindest regards,

    Garland

  • steven59
    steven59 Member Posts: 102 Member
    edited November 2023 #128

    Garland, I remember first getting the diagnosis and the emotional rollercoaster as the team did their work, things move very quickly in the beginning and that first surgery is BRUTAL! I've been down a few times, but, man, they are thorough. I remember every time I fell asleep my blood ox level would drop below 70% and a nurse would run in, wake me up and put an 02 mask on me. I ended up in a bed 2 extra nights because of it and my health is otherwise tip top.

    I think another tool I used was to think how I would be if this cancer had been found in my daughter or wife instead of me and believe it or not it made me...I don't want to say glad, but I was relieved that if it had to hit our family it got me and I didn't have to deal with the trauma of dealing with watching a close loved one go thru it.

    My Dr's waited until my weight was back and I was feeling strong before starting the radiation and coached me up every week, techs are there to talk to every day and know 1. you're not alone and 2. our brain doesn't remember pain. We recover.

  • GarlandCan
    GarlandCan Member Posts: 27 Member

    I will look for swallowing excercises, Thank you! It’s not something you think you would ever need to relearn. Thank you for your time and your reply it sure helps knowing I am not alone.

    Sincerely, 🙏🏻

    Garland

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited November 2023 #130

    So happy I could be of assistance in some way.

    I am glad you have a very supportive family and do agree it is quite an emotional journey that anchors in your soul because it is your mortality you are faced with. It can be an up-and-down emotional journey starting with a diagnosis which gives you fear, then treatment options that give happiness and hope, then surgery or other treatment that brings you down again till you get started on recovering, and feeling positive again it puts your endurance to the test.

    I use one day at a time as a goal, to get through one day and then begin the next morning facing the next one. I think it helps us folks with cancer think more about that one day also and how we can use it best and make it important. I always remember a lady on here who was going through a difficult treatment period break it down even more and it always stuck with me and I have applied it myself at times. She said, "Whatever it takes I will do to get through this week, this day, this hour, this second I strive to do".


    I am glad you are a prayer warrior, and you absolutely went through some difficult surgeries and even when you couldn't breathe God pulled you through. I know you have some fears and we all do especially during cancer treatment because we are exposed to so many new things and tests and procedures it's a normal reaction but check the link below and see if it helps...

    I agree with you, God sends many people our way to help us in our time of trouble and I was very Blessed by so many in treatment and time spent in the hospital. God sent the finest people to help me and some of them went beyond extraordinary. I felt like I was treated like family.

    Thank you for your kind words and May God deliver you through this cancer situation to a cancer-free status.

    Which is termed NED (No Evidence of Disease) which you will run into on this forum and some doctors looking at a clear scan will term it "Unremarkable".

    Wishing You The Best

    Take Care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited November 2023 #131

    Garland, as far as swallowing exercises you can find them on the internet.

    But I think in your case you should check with your care team and or whoever is in charge of your care and ask them about setting you up with a speech therapist. You have some very extensive stuff going on and now radiation therapy. By the way how many treatments are they recommending and are they also recommending chemo? Anyway, you should have a speech therapist, they do all things H&N such as swallowing, breathing, saliva, speech, etc. They may want you to get a swallow test which lets them see exactly what is going on when you swallow and helps them create a plan for you and they will work closely with your doctor and know your case individually and will direct you with the exact swallowing exercises that will benefit you the most. They can be invaluable and helped me greatly.

    Swallowing and Speech Rehabilitation for Head and Neck Cancer


    What happens during a swallow test?


    Take Care, God Bless

    Russ

  • GarlandCan
    GarlandCan Member Posts: 27 Member

    WOW!!! I just read your page. 3 times??! Thank you God for helping you through. Mine is squamous cell carcinoma on the upper right gum area by canine tooth. Cause is thought to be erosive lichen planus. I had 7 teeth removed, gum, soft pallete, bone area where teeth were and radical neck dissection (as a precautionary move advised by Dr) on right side. 22 nodes were removed and one came back with a small surface spot of cancer. So, since 1 came back positive I need 33 radiation treatments for 15 minutes each. I know so little about radiation I’ve no idea what kind or the strength of it. I’m have a consult with chemotherapy Dr on Wednesday to see if they suggest chemotherapy too. I really don’t want it and question the bad vs the benefit, but I am not a Dr, just a scared patient. I have an 11 year old and a 19 year old with autism. I am their world! I worry for them much more than for myself. But, I do KNOW God is with me always. I have to give it to him and do my best to stay strong. Why can’t radiation be done on an area twice? And i had no idea that the after effects would/could keep coming “the gift that keeps on giving”.

    May God continue to bless us 🙏🏻

    Garland

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited November 2023 #133

    Garland, thanks for checkin on me, yes, I always tell people that the only reason I am standing here talking to you is because of the Grace of God.

    My you went through some major surgery. I really sympathize with people who go through major cancer situations and or any major medical situation because I realize now after going through some of my own situations what is involved. So I commiserate with you and thank God for getting you through it.

    When you get radiation therapy one of the first things you will encounter is thickening saliva after a couple of weeks. The best way to deal with it is to keep a waste can nearby to spit out most of it and I would put one of the disposable bags like you get at the grocery store in it and some crumpled newspaper in the bottom to soak it up a bit. You can also use paper towels cut in quarters they are a nice size to spit in and good for other little spills. Also, rinse with the salt mix I posted earlier to keep your mouth cleaned out of the stuff as much as possible and it makes your mouth feel better.

    Also, it is advisable while you are going through radiation and have this thickened saliva to sleep in a recliner because lying down tends to move the thick saliva to your throat more causing coughing and choking. If you don't have a recliner then do some inventive propping in bed with pillows.

    As far as the chemotherapy, you don't know if they are going to recommend it yet. But my opinion and I am speaking to you and to myself as per my own treatments is that if you are confident in your care team and confident in the radiation and chemo doctors and they recommend Radiation and chemo or just radiation I would go with their recommendation. You also have the option of getting a second opinion on your case.

    OK, I know this is not enjoyable and I sense a lot of apprehension and nervousness in your words. I know you said you do not want a feeding tube and here you say you are having a meeting about chemotherapy but you don't want it. Trust me young lady none of us wanted any of this, and till you are done you are going to have things happen that are not enjoyable, it can be tough to downright brutal. I am trying to tell you that this treatment is tough and I am also here to tell you it is doable and you will get through this and you will tolerate and do and get through things you would have never thought were possible. So what I am saying is you need chemo or a feeding tube temporarily, or anything else you can do this and you will get through this, the treatment is temporary, and most of the side effects but like the rest of us you will probably end up with some long term effects like dry mouth.

    So I said all that to say this, do whatever treatment you need to do to get rid of this cancer the first time around, this is a one-shot deal, you don't want to skimp and revisit this again in the future believe me.

    Have you had radiation before???

    OK, I have had radiation twice in the same general area but doctors don't like to use it any more than they have to. Because you can only have so much radiation to an area there are prescribed limits and also I think there is an overall limit to the total radiation you can receive in your lifetime.

    I found this on the net...

    Is there a lifetime limit on radiation treatments?

    There is a limit to the amount of radiation an area of your body can safely receive over the course of your lifetime. Depending on how much radiation an area has already been treated with, you may not be able to have radiation therapy to that area a second time. Jan 8, 2019

    There are also limits on chemotherapy such as in my case there are certain platin chemo drugs they will not give me because of the neuropathy it gave me from the first time.

    This is tough treatment and the body can only take so much.

    Also, think about leather when it's new and soft and flexible and how old leather tends to start getting stiffer and less flexible, that is how our skin and neck area are from radiation so they can only give you so much, and beyond that it causes problems.

    Garland I hope something I said here helps out.

    Wishing You The Best

    Take Care, God Bless

    NEGU (Never Ever Give Up)

    Russ


  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member

    Garland I would like to explain a little more about how much radiation and other treatments you can receive in a lifetime.

    I posted previously that there are limits on radiation and chemotherapy which there are.

    So doctors will use available treatments to eradicate people's cancer such as surgery, radiation, chemotherapy, immunotherapy, etc.

    But if they can just do surgery and eradicate a person's cancer then they have not used radiation or chemotherapy and still have that in the toolbox as an option should the person have a recurrence or get cancer again. If the doctor decides the person needs surgery and radiation then chemotherapy has not been used and is still available in case of another cancer event. Surgery can be used more than once without limits to an extent except surgery in the same area can be disfiguring and debilitating for the patient so there are limits even on surgery especially when it starts affecting quality of life which really applies to all treatments.

    So in closing doctors will use whatever treatments are necessary to eradicate a person's cancer and it could involve one modality like surgery or possibly surgery, radiation, and chemotherapy. But the goal is to get the person cancer-free.

    Wishing You the Best

    Take care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited November 2023 #135

    Garland here is an article I typed up. Please read through it at your leisure, it is a bit long. The very beginning parts will not apply to you just skip past what doesn't apply.

    Take care, God Bless-Russ


    So You Think you Have Cancer?


    So You Think you Have Cancer or Have Something Suspect Going On in the Head and Neck Area.


    Important:

    • Many have feared that the soreness or unusual feeling in their Head & neck Area is cancer and assumed they are going to die. Even if the unusual feeling area is cancer, with modern cancer treatment this is very unlikely and successful treatment is getting better every year.
    • The best way to approach this is with an open mind and calmness and seek the help of a medical professional like an ENT for instance.
    • Many people have worried themselves sick only to find they have no cancer, their problem was caused by something else
    • It’s not cancer till they say it’s cancer verified with scans and a biopsy.
    • This is a step by step process to check, identify, and treat cancer.
    • Whatever your problem is your medical team will get you through this.
    • Many people are upset, worried, and fearful but the best examples of the way to handle this has shown to be stay calm and contact a medical professional such as you family doctor or an ENT and get in and get evaluated as soon as possible.
    • Cancer is no longer the death sentence it once was but this idea persists.
    • Also please remember if you have to enter into a cancer treatment regimen it is not a quick process and in fact usually spans over a number of weeks. But be patient and do your treatments because your medical team has put together a treatment regimen tailored to your cancer and type and location. With advanced treatments we have today the possibility of success of the eradication of a persons cancer has a very good success rate.


    So Next Step Is To:


    • See your family doctor, he may try a round or two of antibiotics or send you to an ENT. (Ear, Nose, and Throat Doctor)
    • Go directly to an ENT is also and option. ENT’s are all things Head and Neck.
    • This is very important! Anytime you go to any meetings during this situation of a possible problem and possible cancer with your Doctor, ENT, Radiation Doctor, Chemo Doctor, Etc. always take a notebook or note pad and if possible absolutely take along another person. Two sets of ears are better than one and you may be given a lot of information. A lot can be thrown at you, new terms you never heard before and just too much info to process in your meeting so have a friend along. Also ask if you can audio or video record your meeting with any doctor you see so you can play it back for anything you missed.
    • If the ENT doctor sees or feels something suspicious or unusual.
    • They may take a biopsy if something is suspicious, visible, on or near the surface.
    • They will send you for a CT Scan with Contrast.
    • If cancer or suspected cancer is seen on the CT scan a biopsy will be ordered.
    • If the biopsy confirms cancer your ENT will order a PET scan. Basically a whole body scan with a small amount of radioactive dye to see if cancer is anywhere else in the body.
    • Cancer must be verified and identified with a biopsy so they know for sure it is cancer and the type of cancer so they know how to treat it.
    • If cancer is not seen anywhere else except where first suspected that is the best news.
    • It means they are treating cancer in only one area.


    Your ENT or Cancer Team Guides the Process of your Treatment


    If you are going through an ENT they may guide the process of your treatment. When I had treatment done my ENT initially found my cancer. He is the one who later took the biopsy. And it was through his office that appointments were made for CT and PET scans. Through his office I was set up with appointments to meet with chemotherapy and radiation doctors. In my case my ENT was my front line guy and through his office everything was coordinated and looked after. And when my treatments were all done I continued to see him for follow up appointments to keep watch for problems or recurrences. I was taken excellent care of the whole time. I had a cancer team coordinated by my ENT.





    You May Have Hospital or Cancer Center A Cancer Team


    Instead of an ENT you may have been referred to a hospital or cancer center to handle your case. So in this case everything may be at this one facility to handle all your needs during your treatment. This would include the same thing, Radiation and Chemotherapy doctors, PET & CT Scans, an ENT to check you and do scopes to watch over you and anything else your case requires including a Tumor Board to review your case for treatment.


    No matter how your case is dealt with there should be someone coordinating all the various doctors, scans, tests, and treatments and follow-ups.


    INTEGRATED APPROACH TO MANAGEMENT

    A multidisciplinary approach is required for optimal decision making, treatment planning, and post-treatment response assessment. This should include surgeons, medical oncologists, and radiation oncologists, chemotherapy oncologists as well as dentists, speech/swallowing pathologists, dietitians, psycho social oncology, prosthodontist , and rehabilitation therapists. Specifically, a multidisciplinary tumor board affects diagnostic and treatment decisions in a significant number of patients with newly diagnosed head and neck tumors for the best outcome.


    What’s Next?


    The next phase now is for your cancer team to look at your scans, biopsy, physical condition, blood tests possibly and work up a treatment plan for you using all the information on you they have.

    Your case may be brought before a tumor board of doctors to discuss your case and share opinions so you get the best possible treatment and the least side effects.

    Your treatment could include surgery, chemotherapy, radiation of some variety or all the above is possible in some cases.



    Dental Care


    Get a full dental exam and any teeth that need repaired should be and any that need extracted should be. You want to go into H&N cancer treatment with your dental condition in perfect condition.


    Gain Weight


    Gain weight unless you already carry extra weight. Eat everything you like and lots of it.

    This is one time you can let go and not worry about calories-enjoy.

    Consult with your doctor about your weight.






    Feeding Tube?--Port?


    Depending on your cancer situation and the treatment plan that is worked up for you your doctors may want you to--

    • Get a feeding tube put in. (Gives your nourishment when you can’t eat-they are a lifesaver)
    • Get a Port put in. (Ports are true vein savers)

    I highly recommend if your doctors tell you to get either of these or both of them before you start treatment don’t hesitate to get them you will be glad later you did. The doctors have experience with past cases and the treatments you are going to get and they know how it affects the human body-trust them.



    Mask?


    If radiation is going to be part of your treatment you will be getting a mask made that is custom made to your head and face.


    What is a radiation mask for?






    The purpose of the mask is to hold your head and neck still and in exactly the right position during treatment,” To make sure treatments are delivered exactly in the proper area every single time.


    Nothing to fear here, they take a nylon mesh from warm water and stretch it over your head and it conforms to the shape of your head and face. This mask fastens to the table as it will during all your radiation treatments so your head is held still and in one place and insures your head is in exactly the same place every time providing extreme accuracy in the delivery of radiation every treatment. After about 20 minutes they will unfasten your mask and when it dries and sets up will retain the form of your head and securely and gently hold your head in place for treatment each time. This ensures treatment is delivered exactly every single time to the cancer area.



    Treatment for Head and Neck Cancer


    Cancer of the head and neck is an umbrella term used to describe a variety of malignant tumors that occur in the mouth, lips, throat, nose, sinuses, larynx, and salivary glands. Together, head and neck cancers account for about 4% of all cancers in the United States.

    A diagnosis of head and neck cancer can be overwhelming. Fortunately, effective treatments are available, including surgery, radiation therapy, chemotherapy, targeted drugs, and immunotherapy.


    How is head and neck cancer treated?


    From my experience and observations these days many doctors, hospitals, or cancer centers try to treat Head and Neck cancer with Chemotherapy and Radiation if possible. The reason for this is it is less debilitating and disfiguring and is usually very effective. I have had this type of treatment for throat cancer. It seems the general rule of thumb as per this treatment regimen is 35 radiation treatments with chemotherapy in the beginning, middle, and at the end of the radiation treatments. Also at times depending on the patients particular situation such as tumor size or location they may receive chemotherapy before this general treatment starts such as extra chemotherapy or possibly in hospital chemo for 5 days at a time.


    Each persons case is different and your doctor will consider all 3 options or more and most likely your case will go before a tumor board of doctors for discussion and conclusion coming up with the best treatment plan for you.


    Several types of treatment are available for head and neck cancers. The choice of treatment varies based on the location of the cancer, whether it is localized or has spread to other parts of the body, and other factors.

    Surgery. Surgical removal of the tumor is often used to treat head and neck cancers. It may be used alone or in combination with radiation therapy and chemotherapy. In some cases, nearby lymph nodes are removed as part of treatment.

    Radiation therapy. This therapy, commonly used to treat head and neck cancers, kills cancer cells by exposing them to radiation. It may be used alone or in combination with surgery. It may also be used before or after surgery to shrink the tumor or destroy any remaining cancer cells, respectively. For advanced-stage cancer, radiation therapy is frequently used in combination with surgery and/or chemotherapy.

    Chemotherapy. Chemotherapy uses drugs to destroy or damage cancer cells. For head and neck cancers, it is usually used in combination with surgery, radiation therapy, or both. It may be given before or after surgery. For advanced-stage cancer, it may be used in combination radiation therapy (known as chemoradiation).

    Targeted therapy. Drugs designed to target epidermal growth factor receptor (EGFR), a protein found on the surface of cells that helps them grow, may be used to treat some head and neck cancers.   

    Immunotherapy. These drugs stimulate the patient’s immune system to help it better fight cancer.

    Reconstructive surgery to restore function of structures damaged by disease or treatment may be necessary. In some cases, patients will need to undergo rehabilitation therapy for speech and swallowing.





    Surgery

    Surgery itself for cancer treatment of the Head and Neck area is pretty self explanatory. It is basically one of the choices of treatment and can be used when it is the best treatment for the cancer you have and the area you have it in. Many times a tumor or cancer area can be removed without affecting function and surrounding areas such as removing a small spot on the tongue for example or a cancer growth somewhere else in the H&N area. Sometimes it is a more involved surgery such as a tumor in the throat area, removal of the thyroid gland, or a radical neck dissection to remove cancerous and suspect lymph nodes. Each individual case is different and the doctors may have a tumor board of doctors to present your case to to come up with the best treatment options and decide the best approach which may be surgery. Your side effects and long term effects from surgery will depend on your specific case. Below is a link to a web site “Perlmutter Cancer Center” offering examples of the types of surgery that may be performed.

    https://nyulangone.org/conditions/head-neck-cancer/treatments/surgery-for-head-neck-cancer




    Side Effects During Treatment With Radiation


    What are the side effects of radiation therapy?

    Radiation therapy can damage normal, healthy cells near and around your cancer. The damage may cause side effects. These side effects can be very different for different people. Your side effects may depend on:

    • The dose and type of radiation used
    • The site of your head and neck cancer
    • The stage of your head and neck cancer
    • Your age

    Types of side effects

    Side effects can appear around 2 weeks after the first radiation treatment or much later and can include:

    • Mouth sores (ulcers in your mouth)
    • Dry mouth
    • Pain or difficulty swallowing
    • Changes in taste or smell
    • Changes in the sound of your voice
    • Jaw stiffness and other problems with your jaw bone
    • Changes in your skin
    • Feeling tired



    Side Effects During Treatment With Chemotherapy


    Side effects of chemotherapy

    Chemotherapy can affect the healthy cells in the body and cause side effects. Everyone reacts differently to chemotherapy, and effects will vary according to the drugs you are given. Some people may have few side effects, while others have many.

    Your medical oncologist or nurse will discuss the likely side effects with you, including how these can be prevented or controlled with medicine.

    Common side effects include:

    • tiredness and fatigue
    • nausea and/or vomiting
    • tingling or numbness in fingers and/or toes (peripheral neuropathy)
    • changes in appetite and loss of taste
    • diarrhea or constipation
    • hair loss
    • low red blood cell count (anemia)
    • hearing loss
    • ringing in the ears (tinnitus)
    • lower levels of white blood cells, which may increase the risk of infection
    • mouth sores.

    Keep a record of the names and doses of your chemotherapy drugs handy. This will save time if you become ill and need to go to the hospital emergency department.



    Targeted therapy

    Targeted therapy targets specific features of cancer cells to stop the cancer growing and spreading. Each targeted therapy drug works on a particular feature, and the drug will only be given if the cancer cells have that feature. For some head and neck cancers, a targeted therapy drug called cetuximab is occasionally used when people cannot take the standard chemotherapy drug or the cancer is advanced.



    What are the possible side effects of targeted therapy?

    Targeted therapy drugs have different side effects than standard or traditional chemotherapy.

    ...

    Other side effects

    • Nausea and vomiting.
    • Diarrhea or constipation.
    • Mouth sores.
    • Shortness of breath or trouble breathing.
    • Cough.
    • Feeling tired all the time (fatigue)
    • Headache.
    • Hair loss.


    Immunotherapy

    Immunotherapy uses the body’s own immune system to fight cancer. The main type of immunotherapy in Australia uses drugs known as checkpoint inhibitors, which help the immune system to recognize and attack cancer cells. Nivolumab is a checkpoint inhibitor used to treat some types of advanced head and neck cancer.

    Side Effects of Immunotherapy Head and Neck Cancer

    These side effects are common but may not occur in all people or with all types of immunotherapies.

    • Feeling tired (fatigue)
    • Diarrhea.
    • Fever.
    • Shortness of breath.
    • Rash and/or blisters, covering less than 10% of the body.
    • Nausea.
    • Vomiting.
    • Itching.







    Below is one persons story of typical Head and Neck Cancer Treatment involving radiation and chemotherapy.

    It gives you an idea of what people face that go through this.

    What you or a loved one may encounter.

    Your results may vary, for example some people get diarrhea and or constipation and some don’t.

    Some get sores inside their mouth from the chemotherapy called mucositis other not so much.

    Consult your care team to deal with any side effects you encounter




    One Persons Story of Head & Neck Cancer Treatment



    Hello Again



    I had 7 weeks of radiation, and three infusions of high-dose cisplatin. (The chemo requires an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).



    On that, yes, I'm still getting tinnitus. It's intermittent and was much worse directly after the chemo - but it's still there. I don't know if it will go away fully or not, but I hope so. (If not, a small price to pay to fight the cancer).



    I never lost my voice, but when the mucositis was at its worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillain or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.



    (And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm), and other bits and bobs all mixed up by a compound chemist. You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis. I couldn't get my hands on any in time to help me.



    I stopped eating around weeks 4-5 of treatment, mostly because of the rancid taste dysgeusia. Everything in my mouth tasted contaminated. (A side effect of the chemo).



    It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).



    Yes, I still have a sometimes sore throat. Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body. It's worse than a normal wound or injury because the treatment actively attacks the stem cells (which normally help you heal), so the wounds can be severe and slow to heal. But my pain is very manageable now .. just 2 panadol today. It was at its worst the first 2 weeks after treatment.



    When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go to the hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty much bed rest and just ticking away time before you start to heal and feel better.



    For me, it went something like this, over the span of treatment:



    Week 1: First round chemo & 5 rads (felt fine, some nausea from chemo)

    Week 2: (5 rads) minor tinnitus onset from chemo, some vomiting, radiation fine

    Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

    Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomiting from chemo

    Week 5: 5 rads) noticeable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

    Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

    Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

    Week 8: (first-week post-treatment) awful awful suffering, vomiting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

    Week 9: (second-week post-treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturizing cream). Pain lessening, but mucositis still awful, night cramps in legs

    Week 10: (third-week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

    Week 11: (fourth-week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

    Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via the mouth and thinking of getting rid of PEG. Pain is manageable, don't require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels



    So ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully, it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.



    Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick"


    Link below to this online forum posting of people discussing treatment side effects.



    https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/td-p/25626/page/2


  • br549329
    br549329 Member Posts: 9 Member

    Anyone had radiation twice in the same area of neck?

  • GarlandCan
    GarlandCan Member Posts: 27 Member

    Thank you so much 🙏🏻 I feel like I’m walking through this process blind so all of your insight is invaluable to me. My care team is spread across 2 cities, which is fine I just wonder if they communicate? Honestly I’m just so scared. I read your other post about the steps and was struck by the very first paragraph. “Am I dying? Will this kill me.” I seem stuck there right now. I am not telling my kids because I can not put this burden or sadness upon them. I’m trying to enjoy each moment and each day but then in the back of my mind thoughts of “is this my last Christmas?” pop up and I fall to pieces. And I’m sorry, and I honestly hope you can help me with this, but why would God allow this? Is there a verse or any wise words you have that could explain to me, even if it’s harsh why this happens. I’m sorry. I’ve no doubt at all, God is always with me, I know he saved me and pulled me through that surgery and I know he’s out angels in place (you being one) to help me through this storm, but did you ever wonder why?

    I will definitely be taking paper and pen to all future appointments. It’s absolutely overwhelming and why I expected myself to remember such important information while in a state of fear and anxiety is beyond me. Thank you for that advice.

    No, I do not want to do this again ever 🙏🏻 So, I will absolutely hear my chemo Dr out on how it would benefit me. I just worry my body will be so damaged I wouldn’t have quality of life left. And then in the same breath I think I’ll do whatever it takes to be here for my kids. It’s an absolute roller coaster ride of the kind I never want to get on again.

    I take care of my 19 year old with autism, my 11 year old needs me and I’m caregiver to my 76 year old disabled Mom. I’m needed, but more important people than me have gone. Now I’m rambling.

    I thank you I thank I thank you for even listening to me. Talking about this to friends or family who’ve no clue what I’m even talking about isn’t satisfying or therapeutic. But here I feel like a family of warriors and hopefully survivors.

    is the feeding tube nose or stomach? I had nose in after surgery but was determined to leave the hospital without it and I passed the swallow test. So it was removed.

    I hope your day is going well and I’m sorry for rambling.

    May God continue to bless us 🙏🏻

    “I can do all things through Christ who strengthens me”

    Kindest regards,

    Garland

  • GarlandCan
    GarlandCan Member Posts: 27 Member

    I haven’t. I’m waiting to go through it the first time. I keep seeing that you can’t because it does so much damage. So it’s like a one shot try, but I could be wrong.

    May God bless you 🙏🏻

  • MarieO
    MarieO Member Posts: 41 Member

    Hello Steven, Russ and friends I haven’t “met”. I saw your updates popping up and because you were right there with me for my husbands journey I wanted to give his update.

    It was a year ago when all this craziness started. And I have to say that we have been truly blessed. During the chemo and radiation treatment he had minimal side effects. And now we are extremely happy to say that he is back to 100%..like it was a bad dream with a happy ending. His taste is back and has been for awhile and his weight is back up. I think because he was down for so many months and now has so much energy he wants to be outside doing something everyday. We have a gardener but as I send this msg he is outside cutting bushes that really don’t need to be cut…I love seeing that. A year ago when this all started I remember telling my husband that a year from now we’re going to be sitting here having coffee and it will all be over… And here we are.

    Sending good thoughts to all of you…and thank you for being so supportive.

    Marie

  • scoleh
    scoleh Member Posts: 36 Member

    Hello Garland. I arrived home from the hospital yesterday after having had right side neck dissection surgery. Don't yet know about chemo but will definitely be starting right side neck radiation a month from now, just after Thanksgiving. In my consults with the oncology doctors and dietician, something that has been impressed upon me is the benefit of a G tube, placed directly into the stomach. Mine will be placed early in the process. My plan is to eat for as long as I'm able in order to maintain normalcy, but the tube will be there for if and when eating becomes too difficult in the sense that at some point I might not be able to comfortably consume calories sufficient to maintain weight.

    Something I've learned is that poor treatment outcomes are often associated with significant weight loss from which individuals are not able to recover. With that in mind, I would encourage anyone going through this kind of treatment to embrace the G tube. I'm not basing that on personal experience, obviously, in that I'm still a month away, but it's the right mentality as far as I'm concerned. Why not do everything possible to maximize the potential for a positive outcome?

  • GarlandCan
    GarlandCan Member Posts: 27 Member

    That is a great attitude and very true! Maximize the odds for the best outcome. I had 22 nodes removed on right side and oral surgery on September 11th. I start radiation soon. Let’s keep in touch and I thank you so much for taking the time to reply.

    God bless you 🙏🏻

    Garland