Husband diagnosed with SCC head and neck

MMDowns

i just read a comment and it's true: the club no one wants to join. Lol! My husband is 55, healthy, non smoker, runner of 5k's was diagnosed with stage IV SCC in one lymph node. Needless to say we were in shock. He found the enlarged lymph node by accident while shaving. We are thankful to God for that miracle otherwise we would still be in blissful ignorance because he does not show any sign of illness at all. As I'm writing this I am waiting in the recovery room because he just has his feeding tube put in. His chemo and radiation will begin a week from today. And we are scared. I've read horrible things about Cisplatin and he will have 3x of that and 35 radiation treatments. He's more worried about the radiation and I'm worried about nausea and vomiting from cisplatin. I've read that Emend should definitely be prescribed before th Chemo and for the next 3 days? He's a teacher and has already said that he wants to teach as long as possible. I know that eventually he will have to take time off but I also know if he's wildly nauseous and or vomiting he won't be able too. I've also done research on ginger and how that's a natural remedy as well. Any help/ suggestions/ questions to ask dr's or meds to push for would be so very helpful.  We are praying and putting as much positivity into this journey as we can. im so glad I found this board. 

bebo12249

There are many side effects

There are many side effects of rads and chemo. Your husband will experience some of them but most likely not near all of them. For example, they gave me the latest nausea meds via IV prior to Cisplatin (I think this is standard protocol). I experienced no nausea. Your husband may experience nausea but not other side effects. Try not to become overwhelmed with the long list of potential side effects; he will experience some but not others. There is no way to predict... I continued to work thru my treatment but in hindsigh, it was a mistake. Toward the last 2-3 weeks of treatment, i was somewhat in a fog. Some refer to it as chemo or radiation brain..Your husband may handle it differently. Bill

Sprint Car Dude

It will be a fight.

This will be a fight. Everyone is their own person. I was fine until about the 4th week of radition and chemo. I had 35 rad and 7 weeks Cisplatin. I would recommend the Port for Chemo and labs if that is an option. Even after the radiation treatments things still for for 2-3 months. This is an excellent form for all kind of questions. I have returned to work 3 months following treatments and it is all I can handle. I as well was in the best shape of my life when I found this all out. Good Luck.

Charlize

Sorry to hear that your

Sorry to hear that your husband was diagnosed with cancer.  You have come to a kind and knowledgeable site. Has your husband seen a natural path (one that knows about cancer)? Ask his oncologist if he can use L-glutamine.  L. glutamine can be helpful to reduce the development of severe mucositis. He needs to commence immediately though, as L-glutamine (swish, gargle, then swallow) is required to be taken a week before he starts.  My husband is seeing his natural path and will be augmenting by intravenous, supplements that will lessen  the negative affects.

MMDowns

bebo12249 said:

There are many side effects

There are many side effects of rads and chemo. Your husband will experience some of them but most likely not near all of them. For example, they gave me the latest nausea meds via IV prior to Cisplatin (I think this is standard protocol). I experienced no nausea. Your husband may experience nausea but not other side effects. Try not to become overwhelmed with the long list of potential side effects; he will experience some but not others. There is no way to predict... I continued to work thru my treatment but in hindsigh, it was a mistake. Toward the last 2-3 weeks of treatment, i was somewhat in a fog. Some refer to it as chemo or radiation brain..Your husband may handle it differently. Bill

You're right. It's hard not

You're right. It's hard not to future trip over what may be.  It's overwhelming and being a "planner" it's a learning curve for me to just let go and take it day by day.  I appreciate your insight. Thank you! 

MarineE5

Echo bebos words

MMDowns, as bebo mentioned, we learn about all the side effects before hand and will no doubt expereince some of them at all different levels. Each of us reacts to the treatments and recovery differently, so what is hard to some, may feel easier to others. 

One thing to remember in all of this and is a Montra here...Hydrate, Hydrate and did I mention..Hydrate some more. 

I was similar to your husband, one morning I accidentally found a tiny bump under my jaw line. Long story made short, I had Surgery for Base of Tongue cancer followed by 30 radiation treatments. The Surgeon was possitive he got everything along with a Radical Neck Disection. Chemo was held back in the event of recurrence which did not happen. This was in 2004. 

My Best to Both of You and Everyone Here

MMDowns

Charlize said:

Sorry to hear that your

Sorry to hear that your husband was diagnosed with cancer.  You have come to a kind and knowledgeable site. Has your husband seen a natural path (one that knows about cancer)? Ask his oncologist if he can use L-glutamine.  L. glutamine can be helpful to reduce the development of severe mucositis. He needs to commence immediately though, as L-glutamine (swish, gargle, then swallow) is required to be taken a week before he starts.  My husband is seeing his natural path and will be augmenting by intravenous, supplements that will lessen  the negative affects.

We don't have a natural path.

We don't have a natural path. I have been doing some research on my own re: natural herbs for nausea, foods to eat to help with inflammation, etc... but I will absolutely ask about L-glutamine. Thank you! 

MMDowns

MarineE5 said:

Echo bebos words

MMDowns, as bebo mentioned, we learn about all the side effects before hand and will no doubt expereince some of them at all different levels. Each of us reacts to the treatments and recovery differently, so what is hard to some, may feel easier to others. 

One thing to remember in all of this and is a Montra here...Hydrate, Hydrate and did I mention..Hydrate some more. 

I was similar to your husband, one morning I accidentally found a tiny bump under my jaw line. Long story made short, I had Surgery for Base of Tongue cancer followed by 30 radiation treatments. The Surgeon was possitive he got everything along with a Radical Neck Disection. Chemo was held back in the event of recurrence which did not happen. This was in 2004. 

My Best to Both of You and Everyone Here

Oh yes! We have been

Oh yes! We have been hydrating, hydrating like mad already.  I think I'm just anxious about all the "wonderful" side effects that the dr's have to tell you. Trying to take everything Day by day. Thank you for your advice. Every little bit helps!! 

bebo12249

MMDowns said:

You're right. It's hard not

You're right. It's hard not to future trip over what may be.  It's overwhelming and being a "planner" it's a learning curve for me to just let go and take it day by day.  I appreciate your insight. Thank you! 

It is very difficult to "plan

It is very difficult to "plan" but there is a lot of very useful information in the Superthread listed at the top of all Forum Topics.

CivilMatt

welcome II

MMD,

How nice to see you again, I am glad you started a new thread, one that is all yours.   Matter-of-fact there will be a whole plethora of side effects (hopefully gentle) which will be all yours.

Now is the time to get smart fast and ask many questions of your team.  Keep them well informed of changes and any topic is open for discussion on here.

Good luck,

Matt

MMDowns

CivilMatt said:

welcome II

MMD,

How nice to see you again, I am glad you started a new thread, one that is all yours.   Matter-of-fact there will be a whole plethora of side effects (hopefully gentle) which will be all yours.

Now is the time to get smart fast and ask many questions of your team.  Keep them well informed of changes and any topic is open for discussion on here.

Good luck,

Matt

 Hello again! I do so hope

 Hello again! I do so hope the side effects are mostly gentle. Thanks again for your kind words! 

swopoe

Sorry you are here. My

Sorry you are here. My husband's tongue cancer was a big shock to us too. Perfectly healthy, and then wham! He had rads and cisplatin, and it has been over a year since he finished treatment and he has had 4 clean scans and is doing great. I know you said you were scared of cisplatin, and so were we. But it was not a problem for my husband. He had 6 chemos, and other than some mild ringing in the ears during treatment and it being a total time suck, my husband had no other side effects from chemo- no nausea, no blood counts off, no nothing. So there is hope. You guys are in my prayers. Hopefully in one year you will type a similar story to ours. Best of luck.

MMDowns

swopoe said:

Sorry you are here. My

Sorry you are here. My husband's tongue cancer was a big shock to us too. Perfectly healthy, and then wham! He had rads and cisplatin, and it has been over a year since he finished treatment and he has had 4 clean scans and is doing great. I know you said you were scared of cisplatin, and so were we. But it was not a problem for my husband. He had 6 chemos, and other than some mild ringing in the ears during treatment and it being a total time suck, my husband had no other side effects from chemo- no nausea, no blood counts off, no nothing. So there is hope. You guys are in my prayers. Hopefully in one year you will type a similar story to ours. Best of luck.

Yes!! I love hearing that. I

Yes!! I love hearing that. I know everyone is differe but that would be amazing if we could avoid the nausea and vomiting because he really does want to continue teaching until he can no longer. Normalcy is huge for both of us. We know how that will help both of us. Congrats on your husband's clear scans! 

RusticWindmill

Sounds like I may just be a bit ahead in my treatment..had I had

My diagnose sounds very similar to your husbands.   Squamous Cell Carcinoma Stage 4a HPV+.

I had my PEG and powerport placed last week Thursday during the same procedure.   Between the anesthesia and pain meds my bowels took a long time to kick back in and caused my BP to drop and me to pass out.   Stool softener remedies this quickly.     The PEG.   Got good info on cleaning the tube and surgical site but not how to mitigate the extra air in the tube which caused lots of pain from injecting the air.   Found a great video online that showed how to back fill to syringe and then do a great flush with out filling stomach with air.   PEG is still in the clean 3 x day standby state.     There is a steroid given for the cisplatin.   My first side effect was the chemo hiccups from this.  They are very annoying.   Was told to use my lorazepam and have some ginger tea to help.   It helps but still get the hiccups for about 10 minutes or so every couple hours.    

Get a small pillow for him to hook to his belt.   Looks funny but if you have to cough, sneeze or hiccup holding the pillow over the peg with light pressure helps so much while healing.    

If his counts go down, all people are different, I think a school would be the last place I would want to be with a weakened immune system.    Maybe my medical team is being ultra cautious but they warned me as flu in this area has really broken out.

just wanted to wish you and your husband the best as you begin the journey.

 

MMDowns

Thank you. It does sound like

Thank you. It does sound like you're a bit ahead of us. Have you had any other symptoms from the Cisplatin besides hiccups?  We talk to our nurse practitioner on Thursday so I am assuming they'll let us know if working is a good idea.  His Peg is heaing nicely with no Issues.  has some slight discomfort when sitting and sort of bending over.  We are getting ready for our next part of the battle. 

Kapital

side effect

Your situation sounds similar to ours 2 years ago when my husband was diagnosed with stage 4 tonsil CA, HPV+. He had Carboplatin X 3, along with 33 radiation treatments. He did not have a PEG tube and worked (teaching) throughout his treatments. He felt that, for him, keeping busy and having something else to focus on kept him moving forward. For the 6.5 weeks of radiation he worked until noon and then drove himself to his radiation treatments, about 25 miles each way. I drove him the 3 times he had chemo and radiation as they were long days. 

Side effects he deat with:  He was given Zofran before each of his chemo treatments, along with Decadron and a liter of fluid, to ward of nausea. It seemed to help. He also took the Zofran for 3 days after treatment. Magic Mouthwash didn't seem to help much for throat pain, but Caphosol rinse seemed to stop his mouth ulcers in their tracks and he never really developed any once he started the Caphosol. As to skin, he used Miaderm cream everyday after treatments, but at night and in the morning used pure aloe gel from the health food store. His skin did really well until the last day, when it became a little oozy looking and red. The doctor gave him Silvadene cream, which worked amazingly well. His neck skin healed up and looked fine within a couple of days. Eating became a challenge around the second week and continued to decline until he was just barely tolerating fluids at the end. Canned peaches, fried eggs, soggy cereal, ice cream...anything soft was about all he could handle. He absolutely hated Ensure and lost 75 lbs over the course of treatments. He did go in for IV rehydration a couple of time a week for 2 weeks after treatments finished, as he found it too difficult to get even water down. Hydration is key, but it is easier said than done.

Well, I hope all these side effects don't scare you. They are obviously all doable, as we got through them. Two years later and my husband is feeling fine and enjoying life. He rides his bike to school most days and plays volleyball once a week. His saliva is still diminished, but better than it was and some of his taste returned, but is not the same as it was. He carries a water bottle wherever he goes and takes great care of his teeth. Life is good! Good luck on your journey.

MMDowns

Thank you for your info! The

Thank you for your info! The side effects don't really scare me. I hope he doesn't lose that much weight.  That would be really scary. But I know he will lose weight and then he will gain it back slowly.  Thank you for the info. I really appreciate it.  it also helps to hear that your husband was still able to teach and managed the side effects from chemo. That's our first hurdle. He really wants to continue teaching at least for the first several weeks. After that he will take a leave. 

blueskiestx

I am very sorry you are going

I am very sorry you are going through this.This sounds very familiar to what we are going through ...

This sounds very familiar to what we are going through ...

My husband went to the dr for a sinus infection, swollen neck gland was his only issue, only to leave with stage 4 SCC.  Doesn't drink, doesn't smoke ... surprise!

My husband was diagnosed back in December.  He started treatment first week in January.  3 sessions of chemo (Cysplatin with Emend administered right before) and 35 radiation treatments.  

Everyone reacts differently to the treatments ...

My husband was really sick after the first session of chemo.  Ginger candy helped him.  We finally realized how to handle the nausea meds.  He has ondansetron and promethazine for anti nausea medicine.  We made sure to not wait the 6 or 8 hours it says on the bottle.  Make sure you take them before the next dose is due.  Once the nausea sets in, its really hard to catch up.  It's a miserable experience.  Try to stay on top of it.

My husband felt okay the first 2 weeks, as okay as can be considering....  It really started getting hard the 3rd.  He couldn't talk without pain and he couldn't swallow much anymore. He received fluids 3 days a week to stay hydrated.  Ask if that is an option.  It helps. 

Make a baking soda rinse to help with mouth sores.  Make sure he rinses often every day. Don't wait for the sores to appear before using the rinse.  Do it before any issues arise.

Ask about Magic Mouthwash if he has trouble swallowing.  It can help relieve some of the pain.  It didn't help here so we use liquid hydrocodone with acetaminophen. That worked much better.

He has not been able to eat anything since week 3.  He has a hard time even swallowing water.  He has a feeding tube and has been able to gain a bit of weight with it.  It's a wonderful thing to have when it's needed.

Radiation can be wicked to the skin.  We use silvadene cream 1%.  It has helped the burns on his neck. Amazing stuff!

Hubby hasn't been to work since his first treatment and won't go back til April.  It has allowed him to focus on getting better.  Not everyone has that option or even wants it.  It has worked well for us.

Hubby had his last chemo yesterday.  He has his last radiation tomorrow.  

 

This is such a great community.  I try to chat in the chatroom whenever possible.  There are so many helpful and knowledgeable people here.  It has helped me figure things out and to just get away for a few moments.  

It has helped me figure things out and to just get away for a few moments.  

 

I wish you the best.  Please remember to take care of yourself during this time.  

 

 

 

 

MMDowns

blueskiestx said:

I am very sorry you are going

I am very sorry you are going through this.This sounds very familiar to what we are going through ...

This sounds very familiar to what we are going through ...

My husband went to the dr for a sinus infection, swollen neck gland was his only issue, only to leave with stage 4 SCC.  Doesn't drink, doesn't smoke ... surprise!

My husband was diagnosed back in December.  He started treatment first week in January.  3 sessions of chemo (Cysplatin with Emend administered right before) and 35 radiation treatments.  

Everyone reacts differently to the treatments ...

My husband was really sick after the first session of chemo.  Ginger candy helped him.  We finally realized how to handle the nausea meds.  He has ondansetron and promethazine for anti nausea medicine.  We made sure to not wait the 6 or 8 hours it says on the bottle.  Make sure you take them before the next dose is due.  Once the nausea sets in, its really hard to catch up.  It's a miserable experience.  Try to stay on top of it.

My husband felt okay the first 2 weeks, as okay as can be considering....  It really started getting hard the 3rd.  He couldn't talk without pain and he couldn't swallow much anymore. He received fluids 3 days a week to stay hydrated.  Ask if that is an option.  It helps. 

Make a baking soda rinse to help with mouth sores.  Make sure he rinses often every day. Don't wait for the sores to appear before using the rinse.  Do it before any issues arise.

Ask about Magic Mouthwash if he has trouble swallowing.  It can help relieve some of the pain.  It didn't help here so we use liquid hydrocodone with acetaminophen. That worked much better.

He has not been able to eat anything since week 3.  He has a hard time even swallowing water.  He has a feeding tube and has been able to gain a bit of weight with it.  It's a wonderful thing to have when it's needed.

Radiation can be wicked to the skin.  We use silvadene cream 1%.  It has helped the burns on his neck. Amazing stuff!

Hubby hasn't been to work since his first treatment and won't go back til April.  It has allowed him to focus on getting better.  Not everyone has that option or even wants it.  It has worked well for us.

Hubby had his last chemo yesterday.  He has his last radiation tomorrow.  

 

This is such a great community.  I try to chat in the chatroom whenever possible.  There are so many helpful and knowledgeable people here.  It has helped me figure things out and to just get away for a few moments.  

It has helped me figure things out and to just get away for a few moments.  

 

I wish you the best.  Please remember to take care of yourself during this time.  

 

 

 

 

Thank you. Congratulations on

Thank you. Congratulations on the end of chemo and the end of

radiation tomorrow! i hope the healing process goes well for your husband. Thanks for the tips on the mouthwash and skin care. I know this is going to be a tough 7 weeks. We are ready to bring so we can reach the finish line.  we are enjoying our last days of "normalcy". He starts Tuesday with radiation and chemo. I'm giving this up to God and the Universe and can pray and hope for the best for him. 

MMDowns

We talked to our nurse

We talked to our nurse practitioner today. I'm so grateful for the nurses we have met throughout this journey. They have all been so lovely and kind. Teresa was no different. She was honest but funny. My husband will be on Emend through IV which will last for three days, a steroid, and zofran. It made me feel better to know that she acknowledged that Cisplatin was a "pukey" drug but he is prescribed heavy doses of anti nausea meds. We start chemo and radiation on Tuesday. So the battle commences.  We are ready to fight.  

 

I  also want to say to everyone that responded; THANK YOU!! Reading

your posts have filled my husband and I with hope, determination, and support. 

swopoe

MMDowns said:

We talked to our nurse

We talked to our nurse practitioner today. I'm so grateful for the nurses we have met throughout this journey. They have all been so lovely and kind. Teresa was no different. She was honest but funny. My husband will be on Emend through IV which will last for three days, a steroid, and zofran. It made me feel better to know that she acknowledged that Cisplatin was a "pukey" drug but he is prescribed heavy doses of anti nausea meds. We start chemo and radiation on Tuesday. So the battle commences.  We are ready to fight.  

 

I  also want to say to everyone that responded; THANK YOU!! Reading

your posts have filled my husband and I with hope, determination, and support. 

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.