Husband diagnosed with SCC head and neck

CivilMatt

a few things

MMDowns,

You are good to go, have a gentle ride.

Remember, drink water often and swallow, swallow, swallow.

You are in this to win, take it one day at a time, keep your humor, have a comfortable chair and blanket, expect  your taste buds to go on a weird vacation, meds are good (have all of them at the ready, bring favorite music to rads and get ready for a good summer.

Best,

Matt     

MMDowns

swopoe said:

My husband had the same 3

My husband had the same 3 drugs via IV while he took cisplatin. Plus they gave him zofran in pill form just in case. He never threw up. You guys can do this! Prayers and best wishes for a smooth journey.

Thank you so much! all

Thank you so much! all prayers are welcome and they work!!

MMDowns

CivilMatt said:

a few things

MMDowns,

You are good to go, have a gentle ride.

Remember, drink water often and swallow, swallow, swallow.

You are in this to win, take it one day at a time, keep your humor, have a comfortable chair and blanket, expect  your taste buds to go on a weird vacation, meds are good (have all of them at the ready, bring favorite music to rads and get ready for a good summer.

Best,

Matt     

Matt,

Matt,

Thanks for your kind words! We are ready for a gentle ride  We will definitely hydrate and swallow! We can't wait until summer! 

MMDowns

Ok. I'm second guessing.

Ok. I'm second guessing. Again. From what I read the Emend is g through IV on the first day and then the patient takes a pill form of Emend for 3 days after. My husband is only getting the IV.  No pills after. The nurse practioner said the emend will last three Day from the IV.  Is that true? He's on the dexamethasone  several days following and she said that helps the Emend. I am just trying to be prepared and the clock is ticking. We only have one working day left until he starts. So if I need to push for a prescription then I need to know. Help!! 

Here_and_Now

Some Suggestions - In the Beginning of the Journey

Greetings: I've just registered and came upon your message and felt compelled to respond.  I am a 10-year survivor in good health.

At age 64, I also found that lump while shaving.  I was diagnosed as being in stage IV of SCC which at first appeared as just as one lump. I had a radical neck resection where they removed 12 tumors, my carotid vein, and the nerve that controls the trapezius muscles. At first the "primary" was obscure but during surgery found to be at the base of the tongue.  It was not removed during surgery without causing damage to my tongue. I was zapped with massive doses of radiation instead.

My course of simultaneous radiation and Cisplatin is almost identical to what is planned for your husband.  There are many things that may happen while on the road to recovery. Some of them appear and then disappear years later.  So, I'll tell you what is most urgent for you to know right now.  

DENTAL SHIELDS - if at all possible, ask for dental shields to protect the teeth and gums.  The radiation diminishes the vascularity of the gums, affects the salivary glands causing severe dry mouth.  All these factors can lead to massive tooth decay.  One year into the recovery, my stable dental situation of many years deteriorated mightily necessitating many root canals and crowns. I was in a dental chair on and off for 4 months just for the first round of repairs. Pay for it if you must. It will save you a ton of money on dental work.

NAUSEA & VOMITING - this was not my experience as the medicine given before Cisplatin handled this.  Smoking marijuana helps with the discomforts post daily radiation.  Get it any way you can and preferably ingest it by a THC vapor pen.

PEG (Gastric Feeding Tube) - I'm glad to know that he's got it at the beginning of treatment. During radiation, and chemo. I resisted until I lost 60 pounds (went down to 120 at 5'11" in height) and then had to have it done while I was in a weaken state. Don't let the PEG tube be loose and flopping around.  This will irritate the stoma through which the tube emerges and may lead to infection.  Use porous non-irritating surgical tape to secure it to the abdomen to keep the tube from moving when not being used. Keep the stoma clean as they is sometimes spillage of the nutrient going into the tube.  Follow all instructions on keeping the tube flushed and clean with water after each feeding. There is a slouching position (as if you are on a recliner) which I found best to get the fluid to go down easily. Sitting upright and straight in a chair is not the best posture. None of this hurts or is a cause of discomfort unless the stoma gets irritated.

RADIATION MUCUS - radiation to the head and neck causes a copious amount of super thick phlegm that accumulates at night and can prevent restful sleep.  I had a high stool stationed at the kitchen sink and used the spray hose to irrigate my mouth and for hacking up mucus and phlegm. Gargle with apple cider vinegar to help loosen it. There may be many visits to the kitchen sink during the course of one night.

SHINGLES - If he hasn't already received the shingles vaccine, ask his doctors if it is still feasible to administer it before treatment begins. I developed shingles 6 months into my recovery. It was so intense that I had to stay in bed for a month.  

NOTE; The recovery clock begins on your last day of treatment and not when you were diagnosed.

FEELINGS OF HUNGER - while on the feeding tube I never experienced any feelings of hunger; this is not unusual.  You must be certain to pour in those calories on schedule.  I was on the PEG for 9 months.  Even after its removal, it was months before I experienced the feelings of hunger.  I had to eat on schedule and it took many months to gain weight.

SUPPORT GROUP - I can't emphasize enough the importance of being in a support group right away at the start of treatment.  I recommend SPOHNC (Support for People with Oral Head and Neck Cancer) https://www.spohnc.org/. They specialize in this particular cancer.  He will have others with which to share experiences and helpful support.  It is best he attend these meetings by himself and not with a spouse or caregiver. There is a dynamic of unvarnished personal truth in these meetings that can be impeded by the presence of a caregiver or someone who is not actually having the cancer experience.

SURVIVAL - A few years ago I was fortunate to find one other person who had the same diagnosis and treatment.  At that time he was 2 years in his recovery; he is now in his 12th year.  Over the years, I have been able to speak with him about things that happen to your body years later while on the recovery trail. In 2008, when I was in my first year of recovery, I met a vibrant woman who was 70 years old who had had the same diagnosis and treatment.  She was diagnosed and treated at age 30 when she was the mother of two young children.  She claimed to be a non-smoker, non-drug user and no alcohol in her lifestyle.  She had the surgery done by a general surgeon and at a time that treatment modalities were more primitive. Image how happy I was to find another human being with the same disease who had survived 40 years.  WOW!

MY CURRENT MISSION - I'm advertising on craigslist to find other survivors of squamous cell cancer with whom I could compare notes, The SPOHNC chapter in my city is no more so I'm creating a new reality.

Should you wish to chat, fell free to call me.

George 
213/434-5520

 

blueskiestx

MMDowns said:

Ok. I'm second guessing.

Ok. I'm second guessing. Again. From what I read the Emend is g through IV on the first day and then the patient takes a pill form of Emend for 3 days after. My husband is only getting the IV.  No pills after. The nurse practioner said the emend will last three Day from the IV.  Is that true? He's on the dexamethasone  several days following and she said that helps the Emend. I am just trying to be prepared and the clock is ticking. We only have one working day left until he starts. So if I need to push for a prescription then I need to know. Help!! 

Nausea Meds - Our Experience

From what we were told at our clinic the emend lasts up to 48 hours but that does not guarantee there will be no nausea before then.  

Dexamethasone is a steroid you take days 2, 3 and 4 after chemo.  It can help with nausea.

By the evening of chemo my husband was taking promethazine before he went to sleep that night.  The first chemo we didn't do that and he was sooooo sick.   We made sure to take meds before bed on a chemo day.  It helped him.  

One thing I noticed, the promethazine knocks my husband out.  Which makes him not eat or drink (all through his PEG tube).  He lost a lot of weight and got dehydrated. 

Try to get a non-drowsy anti-nausea med during the day like Ondansetron, which lasts about 7 - 8 hours.  

MMDowns

Here_and_Now said:

Some Suggestions - In the Beginning of the Journey

Greetings: I've just registered and came upon your message and felt compelled to respond.  I am a 10-year survivor in good health.

At age 64, I also found that lump while shaving.  I was diagnosed as being in stage IV of SCC which at first appeared as just as one lump. I had a radical neck resection where they removed 12 tumors, my carotid vein, and the nerve that controls the trapezius muscles. At first the "primary" was obscure but during surgery found to be at the base of the tongue.  It was not removed during surgery without causing damage to my tongue. I was zapped with massive doses of radiation instead.

My course of simultaneous radiation and Cisplatin is almost identical to what is planned for your husband.  There are many things that may happen while on the road to recovery. Some of them appear and then disappear years later.  So, I'll tell you what is most urgent for you to know right now.  

DENTAL SHIELDS - if at all possible, ask for dental shields to protect the teeth and gums.  The radiation diminishes the vascularity of the gums, affects the salivary glands causing severe dry mouth.  All these factors can lead to massive tooth decay.  One year into the recovery, my stable dental situation of many years deteriorated mightily necessitating many root canals and crowns. I was in a dental chair on and off for 4 months just for the first round of repairs. Pay for it if you must. It will save you a ton of money on dental work.

NAUSEA & VOMITING - this was not my experience as the medicine given before Cisplatin handled this.  Smoking marijuana helps with the discomforts post daily radiation.  Get it any way you can and preferably ingest it by a THC vapor pen.

PEG (Gastric Feeding Tube) - I'm glad to know that he's got it at the beginning of treatment. During radiation, and chemo. I resisted until I lost 60 pounds (went down to 120 at 5'11" in height) and then had to have it done while I was in a weaken state. Don't let the PEG tube be loose and flopping around.  This will irritate the stoma through which the tube emerges and may lead to infection.  Use porous non-irritating surgical tape to secure it to the abdomen to keep the tube from moving when not being used. Keep the stoma clean as they is sometimes spillage of the nutrient going into the tube.  Follow all instructions on keeping the tube flushed and clean with water after each feeding. There is a slouching position (as if you are on a recliner) which I found best to get the fluid to go down easily. Sitting upright and straight in a chair is not the best posture. None of this hurts or is a cause of discomfort unless the stoma gets irritated.

RADIATION MUCUS - radiation to the head and neck causes a copious amount of super thick phlegm that accumulates at night and can prevent restful sleep.  I had a high stool stationed at the kitchen sink and used the spray hose to irrigate my mouth and for hacking up mucus and phlegm. Gargle with apple cider vinegar to help loosen it. There may be many visits to the kitchen sink during the course of one night.

SHINGLES - If he hasn't already received the shingles vaccine, ask his doctors if it is still feasible to administer it before treatment begins. I developed shingles 6 months into my recovery. It was so intense that I had to stay in bed for a month.  

NOTE; The recovery clock begins on your last day of treatment and not when you were diagnosed.

FEELINGS OF HUNGER - while on the feeding tube I never experienced any feelings of hunger; this is not unusual.  You must be certain to pour in those calories on schedule.  I was on the PEG for 9 months.  Even after its removal, it was months before I experienced the feelings of hunger.  I had to eat on schedule and it took many months to gain weight.

SUPPORT GROUP - I can't emphasize enough the importance of being in a support group right away at the start of treatment.  I recommend SPOHNC (Support for People with Oral Head and Neck Cancer) https://www.spohnc.org/. They specialize in this particular cancer.  He will have others with which to share experiences and helpful support.  It is best he attend these meetings by himself and not with a spouse or caregiver. There is a dynamic of unvarnished personal truth in these meetings that can be impeded by the presence of a caregiver or someone who is not actually having the cancer experience.

SURVIVAL - A few years ago I was fortunate to find one other person who had the same diagnosis and treatment.  At that time he was 2 years in his recovery; he is now in his 12th year.  Over the years, I have been able to speak with him about things that happen to your body years later while on the recovery trail. In 2008, when I was in my first year of recovery, I met a vibrant woman who was 70 years old who had had the same diagnosis and treatment.  She was diagnosed and treated at age 30 when she was the mother of two young children.  She claimed to be a non-smoker, non-drug user and no alcohol in her lifestyle.  She had the surgery done by a general surgeon and at a time that treatment modalities were more primitive. Image how happy I was to find another human being with the same disease who had survived 40 years.  WOW!

MY CURRENT MISSION - I'm advertising on craigslist to find other survivors of squamous cell cancer with whom I could compare notes, The SPOHNC chapter in my city is no more so I'm creating a new reality.

Should you wish to chat, fell free to call me.

George 
213/434-5520

 

Thank you for the helpful

Thank you for the helpful info and tips! I talked

to one of the infusion nurses and was once again reassured that my husband should be good to go with all of them meds they are giving him for nausea/vomiting. We are more concerned about the effects from the rads. But we are prepared and ready to do this. 

Ferg61

Nasopharyngeal Cancer

So sorry your apart of this group. I only wish I had found this page when I was going down this road.

I had Stage III Nasopharyngeal Cancer, went through 65 rounds of Radiation (2 times a day) with Erbitux chemotherapy once a week.  I've been cancer free for six years now.  Count my blessings daily.  As a result of radiation I have no saliva and it has caused eating issues.  I just look at it as this is my new normal.  I had asked for feeding tube early in my treatment as I already had issue.

Starting last year I started having issues with my teeth.  It took six months working with TRICARE in order for the dental work needed to be covered under medical.  It's called Adjunctive Dental.  With the help of case manger she has helped me through this nightmare. I went through 20 dives Hyperbaric before surgeon pulled all my teeth in Oct 2016 and 30 dives later.  All covered by TRICARE medical.  I go this week to surgeon to see if im ready for implants. Then 4-6 month healing then new teeth. Hang in there and stay positive....this journey continues.

Dtanman

Can I ask where you are

Can I ask where you are getting your treatment?

MMDowns

Dtanman said:

Can I ask where you are

Can I ask where you are getting your treatment?

We are getting treatment at

We are getting treatment at KU cancer

center in Kansas City 

MMDowns

Hello all. Here we are, the

Hello all. Here we are, the night before our first treatment.  Needless to say, we are nervous. Trying to stay positive and pray for the best.  It's such a surreal time. We have been preparing for this for over a month but now that we are here; I'm not sure how I feel. My husband is pretty awesome. He's calm. I'm not. I think I've cried at least 2x this evening. I'm trying to be the strong one for him. But can I be really honest? This completely sucks. Just sucks. I'm praying for a gentle ride.  

blueskiestx

MMDowns said:

Hello all. Here we are, the

Hello all. Here we are, the night before our first treatment.  Needless to say, we are nervous. Trying to stay positive and pray for the best.  It's such a surreal time. We have been preparing for this for over a month but now that we are here; I'm not sure how I feel. My husband is pretty awesome. He's calm. I'm not. I think I've cried at least 2x this evening. I'm trying to be the strong one for him. But can I be really honest? This completely sucks. Just sucks. I'm praying for a gentle ride.  

How did everything go? 

How did everything go? 

MMDowns

blueskiestx said:

How did everything go? 

How did everything go? 

So far so good.  He's feeling

So far so good.  He's feeling good still. No nausea. The whole day was a lot different than I thought. our nurse was great. She even got the dr. To prescribe another anti-nausea med in case the Zofran doesn't work. They have all reassured us that he should be OK. So for right now he is going to work tomorrow.  We are still praying for a continued gentle ride for the next several weeks. Thanks for asking!

MMDowns

Second day down. Still doing

Second day down. Still doing pretty good. No nausea or vomiting. However he has the hiccups and st one point had them for three hours. so we medicine for that. His appetite disappeared over might. Which was a surprise to me. I thought it would take a few days to lose it but it was quick. He did eat today, he has to because of the steroids. Two more days of steroids and the Aloxi and Emend are still in his system. he went to school and taught today. But was pretty tired after work and radiation.  all's well that ends well. 

MMDowns

hiccups gone. Some nausea has

hiccups gone. Some nausea has set it. I think the Aloxi is starting to lose some of the power. Possibly the Emend as well. Zofran seems to be helping.  I know the answer varies from person to person but will he be nauseous all the time or does it lessen at all? And I spoke too soon.  He just texted me the hiccups have begun and he took Zofran so he can't take the meds for the hiccups. Guys. This sucks. I'm trying not to whine but this is only the 3 rd day and the changes are so fast. Will we get a small break. Will he feel better next week? 

Sprint Car Dude

Hiccup

All of his symptoms are expected and normal. I had Hiccups for 2-3 days following chemo day and then they subsided. I was on no medication for them. There will be good days and bad days. But just keep suppporting him and realize he will not be himself as this journey continues. Keep up the Aloxi and Emend.  Drink water. Lots of good old water. Hydration is vital to treatment. Slip in as many calories as possible as well. This not a time to worry about eating healthly. Calories and Protein are your friends for the next 3 months.  They, your team, expect a certain weight loss and will try to minimize it. Good Luck and Fight the Fight.

MMDowns

He hasn't taken the meds for

He hasn't taken the meds for the hiccups. They subside enough that he's ok. Plus he's taking Zofran on the regular and cant if he takes the meds for hiccups. I'm all about letting him eat but nothing sounds good to him. At all.  That's what just shocks us. How quickly he lost his appetite. It was literally over night.  The Aloxi and Emend were given through IV and we were told that the Aloxi has a 1/2 life of 40 hrs and the Emend should last at least 3 to 4 days. Tomorrow is the last day of steroids as well. But the steroids should be in his system for several more days After. We will see how he does this weekend. I'm hoping for a lot of rest for him. He is still teaching and that is taking a lot of energy. We are fighting the fight just a new "normal" for us. I also think that once we get used to the new normal we will have a better grip on things. Thank you so much for your encouraging words  

 

MMDowns

We made it through our first

We made it through our first week of treatment. For the most part it's been a pretty gentle ride. I'm so grateful for that. We've discovered that sweet tastes better than savory so this weekend I will be meal prepping shakes with protein and smoothies with veggies.  I'm also hoping that the more days we put between the first chemo day he will be feeling better. Today has been a good day. He seems to have more energy and feels good now that he ate things that tasted good. We shall see. He's been amazing this week. 

Sprint Car Dude

Awesome.

The 1 week in the books is a good thing. You now know the routine. Just have to hold on to the ride!

Congradulations. Has there been any feeding tube discussion at all? It might be a viable option towards the end of treatment. For now keep on eating!!!

MMDowns

Sprint Car Dude said:

Awesome.

The 1 week in the books is a good thing. You now know the routine. Just have to hold on to the ride!

Congradulations. Has there been any feeding tube discussion at all? It might be a viable option towards the end of treatment. For now keep on eating!!!

He has a feeding tube already

He has a feeding tube already. The dr. Wanted to put one in before treatment even started. I'm really glad that he insisted. Today was a good day.  He tried a berry smoothie with protein and said it tasted good. That pleased me to no end. This evening he had about 3 bites of Mac and cheese and also said that was Ok. I'll take these small miracles. He's still bummed that food isn't fun anymore and I know that mentally that makes this hard for him. I will do whatever it make whatever he wants at this point.  Day to day is how we are living.