ROOKIE

Vagabond37

After a couple of months of diagnostics and strategizing a treatment regimen, I walked into the chemo lounge for the first time. I’d already had a couple of radiation treatments and was starting to catch on to how this was gonna go. I approached this whole thing naively and with overconfidence in my abilities combined with a gross underestimate of the effects of this whole situation. Lesson 1 was about to be delivered. The chemo lounge was nothing like I thought it would be. I was taken in for a blood draw and then to the oncologist, who said my blood results were good to go and escorted me to the lounge. “Just go in and find a seat”. Walked into a room lined with chairs and IV hangers. Most of the chairs were occupied. A nurse greeted me and told me to find a seat anywhere I wanted. I was trying to find which were the most comforatable since I knew I was going to be there for 5 or 6 hours. As I passed by, a guy hooked up to a bag of stuff laughed “Rookie! Hey psst… first time?” I nodded and he just said “Don’t sit in the blue chairs they ain’t comfortable.” Then I got chased out of one seat, not knowing it was a preferred seat for Hank who the nurse informed me had it reserved because he was there for 8 hours. Sat next to a woman and waited to get hooked up. While I was looking around the woman spoke up. “Hey this your first time?” I nodded. “I been doing this stuff off and on for 25 years. Diagnosed 7 times.” Amazed, I just said “I’m sorry for that. I can’t imagine!” She hit me with lesson one, pointing around the room “Don’t feel sorry for me or yourself, none of us do.” “If you’re lucky you only go through this once. If not…. “ She just held out her hands and smirked. “If you’re here, your life ain’t over - it’s just gonna change. Attitude is what gets you through. The ol’ “whether you think you can or you can’t, you will.” - You get that?” I shook my head and smiled, “I’ve heard it before.” She chuckled at me and directed “Put on your big boy pants and a smile when you walk through that door, if I made it through this a few times, you certainly can do it.” Although I only claim one lesson from that, it was really a few lessons. Attitude, mentors, and encouragement are critical. I’ve learned a lot since that day, but that sticks with me. I wonder if anyone else has had similar experiences.

wbcgaruss

Hello, Vagabond37, and welcome to the CSN H&N discussion forum.

I am glad you got started with your treatment.

This is a whole new world, and when you are new, you don't know what to expect.

It sounds like you got a good, friendly lesson in the chemo lounge with a great bunch of folks that are willing to help you in any way they can.

That's the experience I had in my first cancer, an open room with curtains that could be pulled between each infusion station. But most folks did not have their curtains around them unless they were feeling really bad or something. People chatted and shared stories, and supported each other.

So you have started and are on your way.

Our Motto Here is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

I 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.

Also, I am going to post a write-up below that I made of a general experience through the treatment of 35 radiation treatments for head and neck cancer. Since you already started treatment, some will not apply to you, just skip over it. This is so you have an idea of what to expect, especially when your saliva gets extremely thick from the radiation treatments.

H&N Cancer Sequence Of Treatment

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 directlyto 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 notseen 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 our 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