Newly Diagnosed (HPV+ Oral SCC)

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jkkc61
jkkc61 Member Posts: 10 Member
edited November 2022 in Head and Neck Cancer #1

Hi all,

Regrettably, my mother (61) has recently been diagnosed with HPV 16+ Oropharynx Squamous Cell Carcinoma.

She had little to no symptoms. However, unbeknownst to me, her lymph node on one side of her neck swelled for several weeks. She took the “wait and see” approach until finally going to an ER.

The ER did a CT scan, which showed a mass. They recommended she see an ENT.

The ENT did a scope, biopsy, and PET, but on initial said it was probably Oral Squamous Cell Carcinoma. The biopsy confirmed this and he identified it as being HPV 16+ (my mother has never smoked and hardly drinks). Additionally, he claimed the PET lit up in her mouth and lymph nodes on one side, possibly 3 or 4.

Due to the location, they don’t want to perform Transoral Robotic Surgery (TORS) because it could damage her soft palate as the tumor goes up in the back of her throat. My mother has no tonsils but the tumor appears as she does on one side.

She will be having radiation (70 Gy) administered via Intensity Modulated Radiation Therapy (IMRT) for 7 weeks and chemotherapy (Cisplatin) given in three doses (day 1, 21, and 42).

ENT feels she’s Stage II. T2, N1, M0. However, Oncologist feels she is Stage III because the lymph node is “close” to 6cm (about 5.5cm when measured from exterior), which would make her T2, N3, M0.

I’m pretty worried considering she can’t have TORS. TORS, low dose chemo, and a neck dissection seemed to be the new standard. How effective is chemotherapy and radiation on their own?

The doctors mentioned life expectancy is about 75-80% at 5 years, and said if she made it to 5 years with no recurrence, that’s usually a sign it won’t return. Thoughts on this please? I really pray my mother will beat this. She is relatively healthy aside from this.

Thank you all very much.

-C

Comments

  • zimrx17
    zimrx17 Member Posts: 9 Member
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    Good morning. Sorry your mother is going through this. I was similar, my primary tumor was on the base of my tongue in a super hard to reach (even with TORS) and I had lymph node involvement on both sides. I had radiation and chemo only, seems the same as what they have prescribed for your mom. I had 35 treatments and 3 doses of cisplatin. The treatment kicked my butt, but was successful. From my discussions with them, they were comfortable with this therapy, and for me I am now cured. My largest lymphnode was about 4 cm when they removed it and did pathology on it. I am now 10 months out from end of therapy and all of my follow up scopes have been clean. The few things I have learned is that this type of cancer is very curable. In fact most of the literature and research is how to use lower doses and less invasive treatments to cure, the opposite would be that it is so hard to cure that research is looking at more treatments/more invasive cures/etc... I don't know if there are any head to head studies of TORS + chemo + radiation vs standard of care as far as cure rates. I'm sure some others can add. For me I was told, this is one of the easiest, treatment responsive cancers there are, but one of the toughest treatments to tolerate.

  • jkkc61
    jkkc61 Member Posts: 10 Member
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    Thank you for the response. So glad to hear you are doing well!

    If you don’t mind me asking, was your neck dissection after or prior to treatment? I ask because I believe they have no plans for a neck dissection on my mother at this time.

    I do, however, want to ensure she gets the best care to beat this diagnosis and continue on living life, so any advice helps.

    Thank you.

    -C

  • zimrx17
    zimrx17 Member Posts: 9 Member
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    No neck dissection, here is a rundown -

    Begining of September 2021 - found lymph node on left side of neck, saw primary doc, waited to see if it went down

    Didn't resolve so had US on 9/22 which found multiple enlarged Lymph Nodes on both sides.

    CT on 10/8 which showed same, including the large one on the left.

    October 27th - open neck biopsy, they removed the large lymphnode on left side and pathology showed p16/p40 + HPV driven non-keratonizing squamous cell carcinoma. At this point we did not know where the primary tumor was.

    Was referred to Barnes Jewish in St. Louis for evaluation for TORS and PET Scan. PET showed base of tongue and both side involvement of lymphnodes. Surgeon/Radiation Oncologist/Oncologist all decided that surgery was not an option, and would do chemo/radiation. I was also offered a chance to be in a clinical trial where I would either recieve cisplatin or keytruda + radiation. I chose to stay at home (Springfield, MO) and receive my chemo/radiation.

    Began chemo with cisplatin at 100 mg/m2 times 3 doses, received first dose and first radiation on 11/30/2021. PiCC line was placed on 11/29.

    During all of this I was getting IV fluids on M,W,F.

    Proceeded to lose roughly 40-50 pounds over a 4 week period, got a feeding tube on 12/30/2021.

    Last radiation "rang the bell" on 1/20/2022.

    4/8/2022 - follow up PET Scan was clear, no remaining uptake in base of tongue or either side of neck with lymphnodes.

    Got Feeding Tube out on 8/24/2022.

    Today I feel good. Lot's of "new normal" things, but overall I am happy to be here.

  • jkkc61
    jkkc61 Member Posts: 10 Member
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    Ahh, I see. So they removed the largest lymph node? I think that’s where I thought you had a neck dissection. They haven’t removed any of my mother’s, not even to test them. The one is pretty large, about 5.5cm.

    Funny enough, she is with the same hospital as well (small world). All docs are through there. She was offered a trial as well (Cue101) with normal standard of care (chemo/radiation), but unsure if she’ll participate. Why chance your life even more?

    I appreciate all the insight, and pray you keep staying positive and on track to being considered cured.

    -C

  • zimrx17
    zimrx17 Member Posts: 9 Member
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    Yep, before he went in, the surgeon was contemplating doing a removal vs. punch biopsy. He was thinking lymphoma because I didn't have an obvious tumor. He jokingly said, "dealers choice" that morning. I have a tiny scar and thats it. I will be thinking/praying for you and your mom.

  • wbcgaruss
    wbcgaruss Member Posts: 2,354 Member
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    Hello, and welcome to the CSN Head and neck discussion board, sorry you ended up here but you will find sound advice from people who have gone through the same thing. Just to put your mind at ease chemotherapy and radiation are a pretty standard treatments for H&N cancer these days. Yes, it does work well and I had the same thing for my first cancer, throat cancer back in 2013. And it helps in many instances when surgery could create problems or disfigurement. Your mother should do fine but she should prepare herself by gaining weight and mentally preparing for it. This treatment is very effective but it is difficult and even brutal on patients, especially during the last week or two of treatments and 4-8 following weeks of recovery from treatment. I would recommend you check out the "Superthread" at the top of the H&N discussion page, it is loaded with info explaining a lot of what you need to know. Make sure you go with your mom to all her meetings with her doctors, 2 sets of ears are better than 1 and take a notebook to write stuff down, there is a lot to remember and having it on paper will be good when you get home and have a reference to look at. This is a tough experience but just relax, ask questions, and get your ducks in a row as they say. I am also posting some info below. Did her doctors mention a feeding tube or a port?

    So-Wishing You the Best

    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

  • jkkc61
    jkkc61 Member Posts: 10 Member
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    Thank you for all the information, Russ.

    The doctor mentioned a feeding tube but not a port. Not sure if those are the same things?

    In regards to the feeding tube, he said one may be needed but is not giving my mom one prior to treatment. He said if he recommends one during it, he highly suggests her to take that recommendation and get one.

    I’m hopeful my mom won’t need one but read all over the internet about folks needing one (something like 50%).

    Thanks again, and so glad to hear you beat your diagnosis and are going strong.

    -C

  • jkkc61
    jkkc61 Member Posts: 10 Member
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    I thought I already responded to this but I don’t see it posted here, so I apologize if I respond twice.

    Thank you so much for all the information, Russ.

    They did mention a possibility of a feeding tube, but were going to wait and see how she tolerated treatment. I read online about 50% of people don’t need / need one, so we’re hopeful my mother will be in that group.

    She’ll be starting treatment in the coming weeks, so any prayers or well wishes are appreciated. My mother has many years left of life still - praying she’ll be here for them all.

    Very happy to hear you beat your diagnosis and pray you continue to keep doing well.

    Thanks

    -C

  • wbcgaruss
    wbcgaruss Member Posts: 2,354 Member
    edited November 2022 #10
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    Hey -C glad to help with the info. After going through this I am glad to try to make the way easier for others somewhat to know what to expect. This site was such a great boon to me when I was going through throat cancer treatment. I was 58 at the time of treatment and they said I was considered young and I was in good health otherwise so they said I can tolerate the treatment. Your mother is 61 so not far off what I was and if she is in good health that is a plus. This treatment will eradicate your mother's cancer but it is not easy in the latter stages so just be prepared. There will be things to deal with but keep us updated and we can help you through each phase. I always tell folks going through this that treatment and recovery is not a fast process especially recovery, so measure it in weeks and months, not days and weeks. My Radiation Nurse who met with us before treatment told me "You might as well consider this a year off your life" meaning till I get treatment and recover it could be up to a year and she was right. When it was all said and done I can say up to this point in my life this was the toughest thing I ever did. I am not telling you this to scare you or alarm you, your mother can do this I just want you to be aware it is a challenge. For now, if she doesn't carry a lot of extra weight she should put on weight as much as possible, eat what she likes and high calories and fat to put on weight. Don't forget to look at the "Superthread" at the top of the H&N page also. If at any point your doctor recommends a feeding tube get it, it is a lifesaver and makes things much easier when you have a very sore throat. As far as a port I probably got one because I had extra chemo in the hospital before my actual treatment started and was recommended by my chemo doc so I agreed to it, glad I did quite a vein saver. It is implanted under your skin on your chest and they access it with a needle through the skin to the port. Just for informational; purposes here is a short video explaining ports.

    Prayers your way for your mom.

    If you don't mind it would be more personable if we would have a first name to address you by. Also, a first name for your mother and I will put her on my prayer list. I will anyway but it is easier to pray for a person using a name rather than jkkc61's mom but I easily can pray in that respect also.

    Wishing You and your mom the Best

    Wishing You the Best-Russ