Devastated and confused

brigid55 Member Posts: 3 Member

I'm a 62 yr old female and was recently diagnosed with tongue cancer. I will be having a total glossectomy Sept 5, followed by radiation. My drs have said it's likely I will have a trach and feeding tube the rest of my life.

I'm devastated because at this point in our lives my husband and I thought we would be selecting an r.v. and traveling, not paying medical bills and learning how to clean a trach or use a feeding tube.

I'm confused because the type of cancer I have usually affects people who drink/smoke and I have never done either.

I've come here to ask if any of you have been given the prognosis of having a trach and feeding tube but over come it. Who are now breathing on your own and eating (even if it is a modified diet).

I'd also like to ask if any of you do have a trach and feeding tube but are living an active life -able to travel and do outdoor activities.

Any hope you can give me will be greatly appreciated.


  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    Dear Brigid, welcome to the CSN H&N discussion board. We are glad to have you but like all the rest of us we didn't want to be here. You are at a good place here and will find support. And another important thing you will find here, maybe the most important is hope. You have been given devastating news, but every one on here that had cancer felt the same way, we planned on this, we thought we were going to do that but then cancer came into our lives. We were all devastated by that news. But take heart and keep hope.

    Head and neck cancer is not always caused by smoking or drinking, there are other reasons these days and the main one is the HPV virus. This may not be your case either, sometimes people get cancer for no definable reason, but they get it.

    HPV can infect the mouth and throat and cause cancers of the oropharynx (back of the throat, including the base of the tongue and tonsils). This is called oropharyngeal cancer. HPV is thought to cause 70% of oropharyngeal cancers in the United States.

    Johns Hopkins-HPV and Head & Neck Cancer FAQs

    Brigid, I was in the hospital in 2019 for a lymph node operation that was not encapsulated which caused me to have a more extensive surgery. I had many complications and spent 36 days there before being released to a rehab hospital for 10 days. I left the hospital with a trach and feeding tube and overcome the situation by the Grace of God and managed to get rid of the feeding tube and the trach. You will probably need them for a period of time though. Where you are and where I was is certainly not where I ever thought I would be in life but there I was. My first cancer was throat cancer and I also had a feeding tube that time and a port. All this stuff will be new to you, a whole new world so to speak, but you will adapt and work with what you have and do well, we all did and you too will get through this and find your new normal. You find in this journey that you are able and capable to do more than you ever imagined, I know I found it out. Below are links to stories of ladies that have faced the same things you are facing and they worked through it all and came out victorious and you will too.

    Kate Brown--Life After Tongue Cancer and Total Glossectomy

    Jeannie Hopper--Half of my tongue is gone, but I couldn’t be happier

    I will be able to add more later but for now, this will give you some information. Stay strong, stay positive, keep a positive can-do attitude because cancer patients that do this will find it helps so much. You have this cancer to face and defeat and you will. Above all, in all you do, I recommend you trust in God and Pray on and through Everything, decisions, difficulties, etc.

    Wishing You the Best

    Take care, God Bless-Russ

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

    April 03, 2019

    Half of my tongue is gone, but I couldn’t be happier

    BY Jeannie Hopper

    I’ve had four of my back teeth removed, the floor of my mouth rebuilt and more than half of my tongue replaced with an arm muscle. But other than a slight lisp and some scars on my neck and forearm, there are no obvious signs that I once had stage IV squamous cell carcinoma, a type of oral cancer.

    Recovery from my oral cancer treatment was not fun. It was hard and scary and painful. But it was also worth it.

    That’s why I want to share my story both here and through myCancerConnection, MD Anderson’s one-on-one cancer support community. I want other people facing a similar diagnosis — particularly young mothers — to see that there’s a bright and happy light at the end of that long, dark, uncomfortable tunnel.

    My oral cancer symptoms

    My first symptom of oral cancer was a small, white patch on the underside of my tongue. It randomly appeared in 2011, and was very sensitive and painful. Since I was only about six weeks away from delivering my second child, I assumed it was one of the million weird things that can go on in your body during pregnancy. 

    When it didn’t go away in a week or two, I mentioned it to my OB-GYN. She said it wasn’t pregnancy-related and sent me to a dentist, who said it wasn’t a normal mouth sore and sent me to an oral surgeon. The oral surgeon did a biopsy, which came back negative. He said it was a callus and would resolve on its own.

    I delivered my daughter a few weeks later and lived with that patch on my tongue for the next five years. It only bothered me every few months, so I ignored it.

    My oral cancer diagnosis

    In May 2016, the patch suddenly started hurting. It also seemed to be getting bigger. My general practitioner sent me to an oral surgeon, who did another biopsy. The results showed nothing, but he told me the patch was “moderate dysplasia,” a pre-cancerous condition. Because my tongue had become so painful, he suspected it was already turning into cancer and sent me to an ENT.

    The ENT did a more comprehensive biopsy while I was under anesthesia. He removed three pieces of my tongue, from much deeper down in my throat. When I woke up, he told me that I had squamous cell carcinoma of the tongue, a type of oral cancer.

    I wish I could say I was stoic or brave, but the truth is, I was terrified. After being reassured five years earlier that I was fine, now I had cancer, and it was stage IV.

    Traveling to MD Anderson for the best oral cancer treatment

    The ENT said MD Anderson was the best place for treating squamous cell carcinoma, and my online research made clear that MD Anderson has the world’s best Head and Neck Center. But I didn’t think I could travel back and forth to Houston. My husband and I had just moved our family to northern Mississippi for a new job, and I was worried about how we’d manage.

    My parents and siblings told me to go. They’d take care of the kids, even though they lived in four different states. I made an appointment.

    My oral cancer treatment

    At MD Anderson, my world-renowned oncologists recommended three rounds of induction chemotherapy, followed by surgery and radiation combined with more chemotherapy.

    Dr. Randal Weber removed the tumor from my tongue on Oct. 17, 2016. Then, Dr. Alexander Mericli rebuilt my tongue and the floor of my mouth using part of my left forearm muscle. My medical oncologist, Dr. Merrill Kies (now retired), was in charge of my chemotherapy. And Dr. David Rosenthal was my radiation oncologist.

    The hardest part of recovery: learning to eat with an ‘arm-tongue’

    My new “arm-tongue” felt like a foreign object in my mouth when I woke up from surgery. It was so swollen that it stuck out for about two weeks. I couldn’t close my mouth completely and had to use a bite stick to keep from damaging it accidentally.

    Even after I could close my mouth, speaking was hard for the first few days. But it came back a lot faster than I thought it would. For one thing, I had an entire team of specialists helping me, including speech pathologists, physical therapists, dentists and dieticians. I also did a lot of swallowing, neck and tongue exercises daily, which helped a great deal.

    The hardest part of my recovery was learning how to eat again. I started with liquids and pudding-type food, then soft foods and so on. But I had to pass a swallowing test first, which I wasn’t able to do until six weeks after the surgery. I continued to get most of my nutrition through a PEG tube inserted in my stomach. I kept it in for about seven months, until I could maintain my weight for two weeks eating only by mouth.

    I’m used to my new tongue now, so I can eat just fine, though it’s not always pretty. I just have to take really small bites, drink liquids to help me swallow dry things and only chew on the side of my mouth that has teeth and a “real” tongue. My tongue is tethered to the bottom of my jaw now, too, so I can’t stick it out. But I’m used to it, so it doesn’t really hold me back. I teach classes and give huge presentations at work. It’s not very noticeable.

    Making the best of my new normal

    I lost most of my taste buds through surgery and radiation, so now I can only taste really strong sweet or sour flavors. That makes it hard to get excited about food.

    But I’ve been cancer-free since finishing treatment in December 2016. So, there is, indeed, a light at the end of the tunnel. My goal now is to live the best life possible. I’m grateful to have the opportunity.

    I live more in the moment now and spend more time with my family. I also try to remember that life takes its own path sometimes, and it’s not our fault if it’s not what we planned. You can get tongue cancer even if you’ve never smoked. You can have half your tongue and the floor of your mouth removed and replaced with an arm muscle (what?!) and yet still eat, speak and be awesome. 

    I will always have a lisp and issues with swallowing. I will always eat best when no one is looking. I will never kiss my husband in quite the same way again. And I will never look in the mirror and see the person I expect to. But in spite of all that, I am glad to be alive. I’m proud I made it, elated with my life and happy to be where I am today.

    My advice to other patients: Focus on today

    BY Jeannie Hopper

    I am a strong, athletic, never-been-sick type of person. I am also very career-driven. So when I was diagnosed with stage IV squamous cell carcinoma of the tongue, a type of oral cancer, in 2016, I thought it’d be no problem. I’d undergo treatment and keep working while I was doing it.

    Boy, was I wrong. That might be true for some people, but it sure wasn’t for me. I was hospitalized for a week after my very first chemotherapy treatment. I had to be flown back to Houston from Mississippi so my care team could see me personally. I was dehydrated and a total mess. At one point, I had a complete meltdown, and one of the nurses had to sedate me to keep me from yelling. (So embarrassing!)

    But then, she called in an MD Anderson social work counselor, Djuana Fomby, who helped me put it all in perspective. The day I met with Fomby changed my entire outlook.

    My biggest challenge: relinquishing control

    I was really mad when I was admitted to the hospital. I thought I’d failed because I wasn’t strong enough. I’d heard all these stories about people who were still working while on chemotherapy and felt totally fine. That was not my experience.

    I could barely move and was really weak. I also had to get a PEG tube inserted much sooner than I expected to, because the chemotherapy was attacking the tumor in my mouth, which was affecting the way my tongue and throat functioned. Suddenly, I couldn’t swallow anything, so eating and drinking were not possible. That felt like another way I’d failed.

    Nothing seemed to be in my control anymore, and I was panicking. But the night I lost it, Fomby was a lifesaver. She helped me stop worrying about bills and kids and work and surgery and radiation and mowing the lawn and Jeremy’s spelling test — basically, everything I was mentally piling on myself. She helped me focus on today and understand that I had to let everything else go and take my cancer treatment one day at a time. Because the rest of it wouldn’t matter, if I didn’t get through this first.

    So, I did that. I put on blinders and focused on chemotherapy. No sense in worrying about surgery or radiation yet. Those were still months away. I put all my crazy, overachieving energy into fighting cancer while in treatment, knowing I’d eventually be able to resume all the stuff I really wanted to be doing instead. Cancer became my full-time job. I still had bad days, of course, but because of my attitude adjustment, they became much less frequent and more manageable.

    What I’ve learned from undergoing oral cancer treatment

    Surviving cancer does not magically make me a better or more profound person. But I do feel like my family is stronger now and my career is more successful because of my experience at MD Anderson.

    It was there that I learned I could not do it alone. That took me a long time (and the help of my MD Anderson social work counselor) to finally admit. But I can let people in and trust my health care team, even when the things they tell you seem impossible (a working tongue made out of arm?!).

    I am an incredibly independent and driven person, but it was not until I accepted my situation and permitted others to help me that I was finally able to stop stressing myself out and begin the business of healing. So, control what you can and trust that the rest will work itself out. It’s OK to lean on others.


  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    Cancer-Sequence of Treatment

    So You Think you Have Cancer?

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


    • 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.


    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.


    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 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.

    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 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.

  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    One thing I forgot to answer is the question about activities. With a trach and feeding tube you can do most activities as you always used to but some may require minor adjustments. Such as your trach you can't go in the water swimming and get it underwater for this is now your breathing intake but you can still get in the water. A feeding tube you can get in the water with and submerse it with no problems.

    A trach will now require some maintenance every day at least to some extent. Basic things like cleaning around it, suctioning, and possibly some other depending on your personal situation. I started doing the prescribed maintenance every day but I noticed there was not much going on so I switched to every other day doing the maintenance. Guide below--

    You can walk, jog, cut wood, do yard and gardening, etc. All the things you used to do and again you may need to make minor adjustments.

    Like any new situation, there are things to learn and get used to. Hopefully, your trach will be temporary.

    We obviously don't want feeding tubes and trachs but I am thankful for us all that these things are available. These things save our lives and may be long-term or just temporary. They help us avoid the alternative.

    After having a tracheostomy you should be able to continue doing everyday activities, but should avoid vigorous activities for about 6 weeks after the procedure. It's very important to keep the opening of your tracheostomy clean and dry when you're outside. It will usually be covered with a dressing.

    Your care team will instruct you in all things related to your case. They are there for you lean on them.

    Wishing You The Best

    Take Care, May God Bless & Watch Over You


  • brigid55
    brigid55 Member Posts: 3 Member

    Thank you so much for all the information. It's certainly a lot to take in and try to understand. I'm sure I will continue to go back and read over this for a while. I was happy to read the stories of the ladies who bet the odds. They are quite a bit younger than me, but hopefully age doesn't have everything to do with surviving.

    My doctors have told me that the type of cancer I have is the same that is associated with smokers/drinkers and not HPV. Which, like I said, is very confusing since I never have done either. When growing up both my parents were smokers and also for many years my grandma lived with us and she smoked also. I have also had 2 aunts die of breast cancer and my dad died from bone cancer. I don't know if any of these things factor into my developing cancer or I just fall into the 'unknown' category.

    I do feel a bit more hopeful after reading your comments on activities. My husband was especially happy to know I can start yard work and wood cutting. 😂 Those are activities I don't usually do. Hopefully I can continue my regular activities after some recuperating from surgery and radiation (we don't know yet about chemo).

    Thank you again for all the information, comments, and well wishes.


  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    Brigid, I know I gave you a lot at once but take your time to look it over.

    I always loved those stories of those ladies, how they beat insurmountable odds and show anything can be done. Below is a short video of another lady, not H&N though but she beat the odds. Inspiring stories to show others that it can be done.

    ‘Just never give up’: message from a cancer survivor

    Also at the top of the Head and neck page, the first Listing is called Superthread-read only. Please check that out also it is loaded with links and info of all things H&N.

    My opinion on the age difference is as you get older treatment is a bit harder on you and recovery is a bit longer but you still beat the cancer.

    As far as why you got this particular cancer sometimes things happen without a clearly defined reason. I have known of 2 men that have had breast cancer, not usually associated with men.

    You will get through this just fine but I will tell you it will not be easy and can be downright brutal at times but we all got through it and there are many ladies on here that got through H&N treatment.

    After you are done with this you will find you take a liken to yard work and wood cutting-Hah! What was I thinking? As you continue and have more questions feel free to post them.

    And as one little lady that was a member here and was a great inspiration for us all always said--

    Crystal (LitlcjDoll) on CSN

    "No matter how you feel, Get Up, Dress Up, Show Up, and Never Give Up."

    Take Care, May God Bless & Watch Over You


  • Diogenese
    Diogenese Member Posts: 12 Member

    Hi Brigid!

    I echo everything wbcgaruss said. I highly recommend you

    read the stories of the women who have been where you are

    Learn all you can about your situation and the possible treatments

    maintain a list of all the unusual things that happen to you (physically and mentally) so you can

    ask good questions (keep a running list) when you talk with your doctors

    I like to recommend being as active as you can be (I walked five miles a day after both of my surgeries and during 25 sessions of radiation therapy)

    be as positive as possible

    stay in touch with good friends who will provide you with positive feedback and encouragement

    see if there's a cancer survivors group you can meet with, even if just via zoom or reasonable facsimile and

    pray that the good Lord blesses you, as I will.

  • brigid55
    brigid55 Member Posts: 3 Member

    Thank you for the reply.

    Right now I'm trying to do all the things you have listed. As the surgery date is approaching I've had a little harder time with the 'staying positive' part. My husband assures me that we've been through many changes in the 45 yrs we've been together so we can handle this, too. 😊

    And thank you for the well wishes,