Side effects of radiation and chemo for treatment of NECK cancer.
Hey all. I am new to this forum, but I have questions. I am 7 weeks post radiation and chemo treatments for HVP small cell squama's carcinoma. I knew most of the side effects going into my treatment plan. They all sucked but I knew. I lost my taste after week 2. Needed a feeding PEG tube after week 5. The horror show had begun. I lost 35 lbs because I was not eating and was always behind the 8 ball with dehydration. I absolutely did not want anything in my mouth after week 2. The mucositis was a gross pain in the **** too. Anyway, I am 7 weeks post treatment. Still cannot taste anything. My salivary glands are still pissed off. I am not producing any saliva, and my mouth is as dry as a desert. I understand time is my worst enemy at this point with recovery and healing. Has anybody else experienced these side effects? I know this is all on an individual basis. How long do they last post treatment? Are any of them permanent? I am finally able to eat some solid foods but only very small portions and with lots of cream sauces and gravies. Can't taste any of it though which sucks and this is one of my main worries. (TASTE)Temporary or permanent? Thank you all for your time. God Bless
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Hello, michaela7863, and welcome to the CSN H&N discussion forum.
I am combining several different sources here so there may be some repeats.
Now that you are through the brutal treatment, let the healing begin.
My oh my, brings back memories for me, we all make it but it is a tough haul.
I have been at this a while and have had 35 rads and chemo.
I have had cancer 3 times and spent a lot of time on the discussion boards.
As for myself and the many recoverys i have read about I need to say probably 98% or more get their taste back to some extent.
Very few lose it altogether.
Treatment of head and neck cancers is pretty standard at 35 radiations spread over 7 weeks with chemo added many times in the beginning, middle, and at the end of treatment.
Also, some cases get more chemo as on a case-by-case basis.
I would say just about 100% of patients lose their taste completely or a certain amount of it.
I lost mine completely.
No Taste.
So as long as you can eat, when you have no taste, things taste like cardboard for a couple of weeks and you are forcing food through, literally forcing yourself to eat a certain amount of food each day to get a certain amount of calories in to keep your weight stable.Glad you got the feeding tube, surely a lifesaver and great help in our time of trouble.
after while you will notice a tiny bit of taste coming back usually sweet is first for a lot of people.
Each case is different because each person is physically different, their cancer is different, and their treatment of radiation is different and differently administered.
So as far as each person gets taste back is not known till after you recover and see where you are at.
There was a fellow on my local support group whose taste never came back and as I said earlier that is unusual.
So if you talk to 20 H&N patients with radiation some will say they got almost all taste back, some 20%-30%-40-%-50%, etc.
I have about 30% myself.
But you won't know till after the fact and then that is what you live with.
H&N cancer treatment is Brutal but it is improving.So from what I have seen over the years is people get their taste back with varying degrees.
And there are people who never get their taste back.
I have seen it on the forums and there was a fellow in our local head and neck group that did not get his taste back.
If you have no taste you are in a very small group because for the most part I have witnessed people usually get some percentage of taste back.
Some very little but some, and some people get back near 100%.
I don't know if the salt and baking soda helps with your taste at all, it is mostly used during treatment for thick saliva and a gunky mouth.
As far as I know there is no way to get back taste or smell although I have read of changes happening up to 5 years out but generally after 2 years what you have gotten back is what you are unfortunately stuck with.
I have read from people on the H&N forums is that one thing to try is if there is a Smorghasboard in your area go there and try little bits of varieties of food and see what may give you taste or possibly stimulate your taste buds.
This situation is damage from the radiation and once damaged you can't get back 100%
I have had radiation twice and I would say my taste is around 30-40% I got back.
Also if you have any taste be thankful and just try all kinds of different foods it may help.So you are 7 weeks out of treatment, which means you are finally starting to feel some improvements.
Now is recovery.
Once radiation stops we are as they say cookin yet from the treatment for about another 2 weeks I guess because radiation is cumulative.
Then generally speaking once treatment is done it will be about 4-8 weeks till he starts noticing that hey today I think I am feeling just a little better finally.
From there on he will have small improvements over time.
Recovery is a slow process taking weeks and months not days and weeks like a bad cold or the flu.
So figure 8 months to a year for a full recovery.
So prepare yourself a bit and plan out the time so you both get enough rest and nourishment.Do a little something each day and that can be the win for the day.
Our motto here is NEGU (Never Ever Give Up)
Here is a video you may like…
Lost in Transition -- After Cancer Treatment EndsI would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.
Wishing You The Best
Take Care, God Bless
Russ
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hi, so sorry you’re going through this. I had metastatic tongue cancer in 2021 and radiation was brutal. It actually came back in 2023 even after radiation. The good news is that my taste came back to close to before. Not quite, but enough to enjoy food. The pain for me was the worst on my final 2 weeks and then the following month. But you WILL recover. I’m currently struggling with some trauma issues from the diagnosis. I’m living in survival mode. Anyone going through this mental health surprise to cancer?
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H&N cancer is noted as the most difficult and most brutal cancer treatment to go through, and it's no wonder considering it affects so many important functions and sometimes multiple functions at the same time.
Can you explain your survival mode, and can we talk about it and work it out?
I can assure you there are many people who went through these treatments and struggled with depression and mental issues, and it's nothing to fool with, you need to get with your care team and get the help you need, don't ignore it.
I am concerned for you, and I pray that you get the help you need and get yourself going again.
(Content removed by CSN) and get a piece of paper, and write down all the blessings you have. A lot of what we take for granted are in fact Blessings, even food every day and a roof over our head, clothes to wear and shoes.
Check out the video below of cancer recovery, it is many times not easy but surely doable…
Lost in Transition -- After Cancer Treatment Ends(content removed by CSN)
Wishing You The Best
NEGU (Never Ever Give Up)
Take Care, God Bless
Russ
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Thanks for the video! There is so much truth in that video. I don’t think there it will ever be the same “normal.” Which I think I just have to get used to. Any resources for cancer related trauma? Support groups, books? Having to apologize to your 1 yr old daughter that she might not have a dad has been a traumatic experience that I can’t shake off.
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Thanks for reading my post. I am grateful for everything I have. I did have some dark days. But I have a really great support group that I lean on. I journal every day. Yes, I know now that cancer is always going to be a part of my life. I do pray a lot. I am making positive steps forward. Thank you for the song lyrics. MA
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Hi michaela7863.
I am new here too. Have a lump on my neck, just had a biopsy and am awaiting the results but the ENT doc thinks it is HVP small cell squama's carcinoma. Reading about these side effects is scary. Terrifying really. I have also read about recent changes to protocols like 'de-escalation' (less radiation) and immunotherapies. I'm just curious if you ever discussed these possibilities with your doctors? Was it something that you knew about?
Concerning not wanting anything in your mouth, did that include water? Like you didn't even want to drink water?
I'm likely to start treatments sometime within the next few weeks and I pray to God I somehow manage to keep feeding myself and avoid the worst of the side effects.
rkinjo, I'm truly sorry to hear it came back… Was yours HPV related?
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hi mossback99, I never found out if my tumors were HPV related, but very well could be.
Drinking water during radiation was fine. Any liquids were okay except there’s no taste. I don’t remember any pain drinking liquids. Any food will turn into dust. I lost about 30 pounds very quickly. For some reason I was able to, very faintly, taste sweet foods. So a lot of fruity pebbles and those Frappuccino’s to keep my calories up.Are you having surgery first?
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Thanks for your answers.
I don't know about surgery. I haven't even been completely diagnosed yet. Supposed to get biopsy results sometime this week. The wait for that alone has been arduous..
To be completely candid, after reading about this a fair amount, I'm almost as scared of the treatments and side effects as I am of the cancer itself. It's really, really scary stuff.
I almost wonder if I shouldn't read anything more about what might be ahead.
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Hello, mossback99, and welcome to the forum.
I am sorry you need to be here but this is a good place to be for support of H&N cancer.
I see you are wondering how much you should know about treatment and side effects.
My opinion is learn as much as you can about it so you are prepared to deal with anything that comes along.
You can do this and get through it, many before you did.
I am posting a guide I made up a while back about H&N cancer treatment from start to finish.
Some may not apply to you but I hope some of it helps.
Our Motto Here-NEGU (Never Ever Give Up)
Also, I recommend when you get a chance check out the "SuperThread" at the top of the page on the home page of the Head and Neck Forum here. It is a gathering of information, links, videos, etc. to help those dealing with H&N cancer.
Wishing you the very best…
Take Care, God Bless
Russ
Any questions please ask.
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?
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.
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.
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Hi mossback99, you should definitely wait until your biopsy reports. If it’s a shallow invasion, then all fright won’t matter. As you have probably experienced, the Google rabbit holes are very scary and a most of it won’t pertain to you. If Google was right, given my pathology, I wouldn’t be here now. But 100% back to my normal self. Long term side effects of radiation is just a small nuisance that easily managed. What you’re going through is by far the hardest part. I was actually the opposite, I was almost in denial when I got biopsied.
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rkinjo, thanks for the positive thoughts and energy. I truly appreciate it. Fantastic you are 100% back to your normal self. That is wonderful and I hope I can achieve the same if I must go down this path.
Russ, thanks for all that comprehensive info. Just to clarify, did you have H&N cancer? And concerning the one persons story at the end of your post, do you know what the general timeframe of that was? Like did that take place a few years ago, ten years ago, etc?
Finally, to any dad's here, happy father's day and best wishes to you.
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mossback99, in answer to your questions, yes I have had H&N cancer 3 times.
Throat cancer2012/13.
Tongue cancer 2018
Lymph Node cancer 2019, left side of my neck and not encapsulated meaning it is no longer encapsulated in the lymph node but had broken through and had spread.
If you want to know a persons story on the forum below are instructions to access it and instructions to make your own…
Profile
You must register on CSN to create a profile or access other member’s profiles. Your profile has your About Me section where you can tell your story and upload your avatar image. It also includes links to the topics and comments you have created.
To view your Profile page:
- Click on your avatar in the upper right corner.
- When the pop-up box opens, click your avatar that is located in the pop-up box.
To edit your Profile page:
- Click on your avatar in the upper right corner. Then click on ‘Edit Profile’.
- Make your desired changes.
- Click ‘Save’.
To create add an image for your avatar:
- Click on your avatar in the upper right corner. Then click on ‘Edit Profile’.
- Click ‘Change My Picture’.
- Click ‘Upload New Picture’.
- Locate the picture you wish to upload and click ‘Open’.
You can also click on any persons name or Avatar in each thread and see their profile page.
The persons story on the end of the information I left previously is from a Head and Neck support group online thread called Cancer Council Online Community in Australia.
The thread was titled…
Your experience with side effects from head & neck cancer treatment (radiation / mucositis)
That response was on page 2 of 42 pages in that thread.
There should be a lot of great info and experience mixed in among those 42 pages if you want to check it out.
The thread is dated February 2017.
The treatment side effects are typical for head and neck radiation and chemo treatment scenario that is usually administered to wipe out many head and neck cancers, and that is with those modality's alone and not including surgery, although it could include surgery in some instances. The standard treatment seems to be 35 radiation treatments over 7 weeks with chemotherapy in the beginning, at the middle, and at the end. Depending on your cancer, it's size, and location your care team may add or vary treatments and it would be a little different. The results you see on the fellow's case that is presented in that Australian thread or should I say the after effects are going to vary by person and individual cancer case. And you won't know until you just go through them. Some have had it relatively easy and others were just plain Brutal. But the key to all of them was they persevered dealing with whatever came up during the course of treatments and recovery and made it through and so can you or anyone else.
One of the main benefits of radiation and chemotherapy to get rid of head and neck cancer is not using surgery and thus avoiding disfigurement, scarring, plastic surgery, and rehabilitation and physical therapy.
If you look down a little farther below the description of daily treatment there is a small paragraph and 2 lines which read…
Link below to this online forum posting of people discussing treatment side effects.
Which was a link to that whole forum discussion.
Wishing you the very best…
NEGU (Never Ever Give Up)
Take Care, God Bless
Russ
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wbcgaruss, I just read your profile. Your resilience is amazing! I had a recurrence once and it was almost no big deal. The first time is scary because there’s no relationship with your medical team and navigating insurance, hospital systems etc. once that is figured out, it feels more routine. It’s amazing how tough we can get after a diagnosis! Very little things faze me anymore. Thanks for your sharing your profile
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Thanks for all the info, links and insights, Russ. Sorry to hear you have dealt with this three times now… I hope you are all better and stay that way.
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Hi mossback99,
Please feel free to search my posts under Swoosh13 where my husband had Stage I base of tongue SCC HPV 16+ diagnosed in July 2023. He first told me he had a swollen lymph node on the left side of his neck in late 3/23. He saw our ENT late 5/23 who sent him for an US which looked suspicious. Next a CT scan of that side and biopsy of node in early 7/23 and whole body PET scan mid-July 2023. Saw his 3 tumor board drs end of 7/23 who made the diagnosis of Stage I and his treatment plan. We were told to have him put weight on prior to treatment and he went from 207 to 215. They did not do surgery as the location of left side base of tongue wouldn’t get clean margins. He started 7 weeks of daily radiation and once weekly Cisplatin chemo day after Labor Day 2023. Third week in all food taste went bad. Water was fine. He lost about 30 pounds. Finished treatment late Oct 2023. Was it easy, no but doable. He was also Type II Diabetic going in which complicated things as his blood sugar would spike weekly due to the steroid he got with every chemo. He never needed a feeding tube, thankfully.
We started going out to breakfast 2-3 times/week after treatment as it was high calorie and his taste was coming back.
First year saw 3 tumor board drs every 3 mos. First PET 2/24 NED (No Evidence of Disease) and second year every 4 mos. We see his Radiologist tomorrow for his regular 4 mo check up.
Most taste is back now. His diabetes is so much better due to the weight loss. He has so much energy, he’s been doing all our landscaping this summer, planting flowers etc. Today put a new battery in my SUV and cleaned up our motorcycle so we can go riding. It almost amazes me sometimes.
He will be 69 in Aug and we both still work 3 days/week, which we enjoy. Believe me when I say you will gain a new perspective on life after going through something like this.
Russ and everyone else here helped us get through this and you will too!Blessings.
Swoosh131 -
Hello mossback99,
This is my second bout with neck cancer. 2020 was my first diagnosis of neck cancer HPV in nature. Thought it was taken care of with the surgery I had. A radical bilateral neck dissection. Fast forward 4.5 years with six months to go for a clean bill of health. Then WHAM!!!! Another visit from the villain called cancer. I started radiation and chemotherapy back in late February 2025. I had 35 radiation treatments. 3 chemo treatments all in a 7-week period of time. I wouldn't wish this treatment modality on my worst enemy. After week two I lost my taste, and I have yet to reclaim it as of today. My salivary glands are still very angry, so I am not producing any saliva which is very important to your mouth in all aspects. My oncologist(s) told me that radiation and chemo are the gold standards for my type of cancer. De-escalation was not an option for me. I asked about it. Immunotherapies I was told is the third line of treatment for my type of cancer if the chemo and radiation don't work. My next BIG follow up appointment is July 2025. They have to wait 90 days post treatment for a PET-Scan and lab work because of all the trauma, swelling and irritation of my neck and mouth caused by the treatment plan I endured. The radiation did a number in my mouth. I had mouth sores, a really bad case of mucositis. Dry mouth like crazy. To the point where I literally did not want anything in my mouth. Including water. Everything I put into my mouth had the texture of SLIME. Food was like eating cardboard. Because of these side effects I fought a battle with dehydration. I lost 35 pounds. I was on the verge of malnutrition. At week 5 of treatment, I had to get a PEG tube put in. (Feeding tube) or I was going to end up in the ICU. The doctors were amazed I made to week 5. Most people get a PEG tube at week 2. Everybody reacts different to treatment. This was my experience. I am 9 weeks post treatment. I am feeling better with more pep in my step. I can actually eat solid foods now. Still no taste though. I can drink fluids now orally. I still have the PEG tube. It's about a 70/30 split oral intake vs PEG tube. This has been my experience. Everybody is different. I wish you all the BEST. God Bless. I will be praying for you.
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Swoosh13, thank you so much for your post. For sure some similarities between your husband and I so this is particularly interesting.
I have absolutely no doubt that I would gain a new perspective on life after going through something like this. In some ways I already do. I look around at all the normal, healthy people and pray to God that I can once again be like that some day. The story of your husband gives me great hope.
We just went out of dinner tonight for father's day and I ate as much as I could.
Very, very encouraging he never needed a feeding tube. I would be so grateful to be in the same boat.
During the thick of treatments, are you functional at all? Like can you move around the house and do simple chores and stuff? Can you drive and do simple errands?
And do I understand correctly that he did radiation every day for seven weeks? Like seven days a week he would have to go in? I know just about nothing but didn't think it was that often/frequent. Again, I know nothing.
Thank you again, Swoosh13. I hope the regular 4 mo check up is NED and 100% healthy.
Best wishes and God bless you.
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Hello,
My treatments were Monday thru Friday for 7 weeks. My chemo treatments were 1 every three weeks at the infusion center for a total of 3 chemo treatments. During the course of the treatment plan if you feel up to it you can do stuff. But at some point, I felt like crap, so I asked for help from my support group. (Family and friends) You will need a really good support system.
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michaela7863, I'm really, really sorry to hear this is your second time. And I'm also sorry for all you have endured to this point. I sincerely hope your next scan in July shows excellent progress.
On your first bout, they only did surgery? No chemo or radiation in addition? And may I also ask your approximate age?
The one thing that is confusing me a bit is the immunotherapies option. I just read an article last month that stated what a game changer it could be for H&N cancers. Not only less side effects and faster treatments but also less chance of recurrence. I wonder why they aren't promoting this more since it might be so helpful. I'll certainly be asking about this more if/when I meet with my treatment board.
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Hi Again Mossback99,
Just to answer a few of your questions. For radiation it is generally (for my husband at least) 7 weeks but ONLY weekdays. You always have weekends off. We were given a choice of 3 large chemo doses once/week about every other week over the 7 weeks OR a smaller dose once weekly for 7 weeks. We chose the smaller once/weekly treatment for several reasons. We did get a second opinion at a major cancer center in Chicago that told us they ONLY do the weekly ones so that really helped us decide.
Many people are able to drive themselves if they feel up to it. Usually my husband did, but I always went with for his weekly chemos.
As for activity, he is semi-retired and had only been working 3 days/week so he stopped working right before treatment started in 9/23 and didn’t go back until 5/24. He’s back to his normal schedule and his boss was very understanding. Not everyone has that luxury of taking off especially if they’re younger and work through it.
Keep in mind that the radiation is cumulative so as the weeks go by it gets harder (not to scare you) but you must get as much nutrition and REST as much as possible. We did treatments in the morning so he could get in about a 3 hour nap everyday. He also slept fine every night.
BTW, he is our primary cook (he loves it and could be a chef) so I took that over. It was hard to figure out what he’d eat but he did.
I think you will feel a bit better once your doctor(s) do a biopsy and tell you your “plan,” as knowledge is power. I went to every weekly dr appt with him and keep notes/questions on my iPhone.
Feel free to ask me and others here anything and you can always write me privately through the messaging on this website if you’d like.
Swoosh131
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