Video: What to expect from head and neck cancer
Has anyone seen this video? https://www.youtube.com/watch?v=pxjDHcCHHZg
How did it compare to your experience? My husband has been diagnosed with HPV related Oropharangeal Cancer (which is what I think the gentleman in the video had) and he found and watched this video by himself. I've never seen him so scared. He's convinced that after treatment he will never be the same.
FYI treatment plan will be finalized this week. Might be surgery/radiation with possible chemo depending upon margins and extracapsular spread or no surgery/clinical study (clinical study is 5 weeks radiation/6 days a week OR 6 weeks radiation/5 days a week plus Cisplatin intravelously over 30-60 minutes weekly during radiation therapy for 6 doses - my understanding is that it is a lesser dose than standard chemo). I will say that he is very concerned about Cisplatin due to possibility of hearing loss.
Nancy
Comments
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Thanks for yourrcaulder said:It's going to be OK
Nancy, assure your husband it's going to be ok. I'm exactly a year out from initial DX and treatment. I was DX in May and completed the treatment in July. I can say yes this video did parallel my treatment. I have to admit the video did bring back many things I would rather forget. I chose not to do Cisplatin due to the potential side affects, I chose Erbitux instead. Treatment was tough. But there were so many people on this board and at all of my appointments who helped me through. My wife really was my rock. She did so much to keep me going. Your husband didn't have a choice in this disease, but he does have a choice in how he battles it. Prayers are with you both.
Thanks for your encouragement. Sorry to bring back some not-so-great memories. I'll ask the MO about Erbitux but that wouldn't be an option for the clinical trial...which would mean more radiation. Trade-offs, I know. We'll be asking what all of our options are and which one would have the least impact to my husband (assuming outcomes are equal).
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It's going to be OK
Nancy, assure your husband it's going to be ok. I'm exactly a year out from initial DX and treatment. I was DX in May and completed the treatment in July. I can say yes this video did parallel my treatment. I have to admit the video did bring back many things I would rather forget. I chose not to do Cisplatin due to the potential side affects, I chose Erbitux instead. Treatment was tough. But there were so many people on this board and at all of my appointments who helped me through. My wife really was my rock. She did so much to keep me going. Your husband didn't have a choice in this disease, but he does have a choice in how he battles it. Prayers are with you both.
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Breathe, Nancy. I watched
Breathe, Nancy. I watched that video Just now. My husband had 30 rads over 6 weeks and 6 cisplatin treatments for tongue cancer starting back in December 2015. He has no hearing loss and the rash on his neck didn't look anywhere close to as bad as the man's in the video. So everyone will be different. It will all be ok. We made it, and you guys will too. Now, at 4 months post treatment, if you never knew my husband had tongue cancer, you would never know unless he told you. Our days are honestly back to normal. We are here for you!
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The problem with a video on HNC is....
tho there is a general resemblence to my treatment....the two main things being lack of taste and a lack of saliva....no two journey's are the same. I had nasopharyngeal cancer....behind the nose. Instead of having the weekly lower dose cisplatin, I had the big dose every 3 weeks during radiation. That meant I had 2 weeks of no chemo, and the nausea would go away, and I'd feel better. I had a feeding tube put in before treatment....I didn't use it once during radiation....there are meds to use for mouth sores that really help.
My neck got sunburned, but using aloe and calendula ointment keep the real bad burn at bay (that was a burn you saw on his neck, not a rash)....I still have the bottle of liquid hydrocodone....and it's still almost full. I had 35 radiation treatments, and 3 chemo's during the rads. The thing I hated the most was feeling weak. I lost 20 lbs. It's scary to hear the word cancer....for both you and him.....the treatment isn't easy, but.....it lasts 6 weeks, and then it's healing time. Things get back to abi-normal....some folks heal up quickly, others take longer, but it still happens....healing takes place! I do have ringing in my ears, but no hearing loss.
He's going to be ok....he has you. And having a caretaker to lean on is so important!
As swopoe said....breathe....make a list of things he will need in the first couple weeks....lotions, box of soda and a thing of salt, biotene products for when the spit starts to dry up. Other items will come up as treatment progresses. One thing that saved me during treatment was coming here to ask questions. The Drs. do a wonderful job on the medical part of things, but it's the details...the small things that we're really good at. Ask a question, get 6 different answers...if one doesn't work, there are 5 other things to try.
Welcome to the club nobody wants to join....You are in fine company, tho.....great people here....supportive, kind, and very very smart.
p
PS....learning to fall asleep at any time, during any activity, in any position is wonderful for us the patients....it will probably drive you crazy, don't worry about it....it's a great escape
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Yes, burn, not a rash.phrannie51 said:The problem with a video on HNC is....
tho there is a general resemblence to my treatment....the two main things being lack of taste and a lack of saliva....no two journey's are the same. I had nasopharyngeal cancer....behind the nose. Instead of having the weekly lower dose cisplatin, I had the big dose every 3 weeks during radiation. That meant I had 2 weeks of no chemo, and the nausea would go away, and I'd feel better. I had a feeding tube put in before treatment....I didn't use it once during radiation....there are meds to use for mouth sores that really help.
My neck got sunburned, but using aloe and calendula ointment keep the real bad burn at bay (that was a burn you saw on his neck, not a rash)....I still have the bottle of liquid hydrocodone....and it's still almost full. I had 35 radiation treatments, and 3 chemo's during the rads. The thing I hated the most was feeling weak. I lost 20 lbs. It's scary to hear the word cancer....for both you and him.....the treatment isn't easy, but.....it lasts 6 weeks, and then it's healing time. Things get back to abi-normal....some folks heal up quickly, others take longer, but it still happens....healing takes place! I do have ringing in my ears, but no hearing loss.
He's going to be ok....he has you. And having a caretaker to lean on is so important!
As swopoe said....breathe....make a list of things he will need in the first couple weeks....lotions, box of soda and a thing of salt, biotene products for when the spit starts to dry up. Other items will come up as treatment progresses. One thing that saved me during treatment was coming here to ask questions. The Drs. do a wonderful job on the medical part of things, but it's the details...the small things that we're really good at. Ask a question, get 6 different answers...if one doesn't work, there are 5 other things to try.
Welcome to the club nobody wants to join....You are in fine company, tho.....great people here....supportive, kind, and very very smart.
p
PS....learning to fall asleep at any time, during any activity, in any position is wonderful for us the patients....it will probably drive you crazy, don't worry about it....it's a great escape
. Yes, burn, not a rash. Phrannie corrected me. My husband's neck looked just a little red, and only on one side, even though his whole neck was getting radiated. Everyone's journey is different. But you do have a whole lot of support here. Lean on us.
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I'm Breathingswopoe said:Breathe, Nancy. I watched
Breathe, Nancy. I watched that video Just now. My husband had 30 rads over 6 weeks and 6 cisplatin treatments for tongue cancer starting back in December 2015. He has no hearing loss and the rash on his neck didn't look anywhere close to as bad as the man's in the video. So everyone will be different. It will all be ok. We made it, and you guys will too. Now, at 4 months post treatment, if you never knew my husband had tongue cancer, you would never know unless he told you. Our days are honestly back to normal. We are here for you!
Thanks! I am breathing...it's my husband who I'm trying to help breathe. I keep telling him that everyone's different and no two people have exactly the same side effects. I will definitely share your husband's success with him.
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Thank you!phrannie51 said:The problem with a video on HNC is....
tho there is a general resemblence to my treatment....the two main things being lack of taste and a lack of saliva....no two journey's are the same. I had nasopharyngeal cancer....behind the nose. Instead of having the weekly lower dose cisplatin, I had the big dose every 3 weeks during radiation. That meant I had 2 weeks of no chemo, and the nausea would go away, and I'd feel better. I had a feeding tube put in before treatment....I didn't use it once during radiation....there are meds to use for mouth sores that really help.
My neck got sunburned, but using aloe and calendula ointment keep the real bad burn at bay (that was a burn you saw on his neck, not a rash)....I still have the bottle of liquid hydrocodone....and it's still almost full. I had 35 radiation treatments, and 3 chemo's during the rads. The thing I hated the most was feeling weak. I lost 20 lbs. It's scary to hear the word cancer....for both you and him.....the treatment isn't easy, but.....it lasts 6 weeks, and then it's healing time. Things get back to abi-normal....some folks heal up quickly, others take longer, but it still happens....healing takes place! I do have ringing in my ears, but no hearing loss.
He's going to be ok....he has you. And having a caretaker to lean on is so important!
As swopoe said....breathe....make a list of things he will need in the first couple weeks....lotions, box of soda and a thing of salt, biotene products for when the spit starts to dry up. Other items will come up as treatment progresses. One thing that saved me during treatment was coming here to ask questions. The Drs. do a wonderful job on the medical part of things, but it's the details...the small things that we're really good at. Ask a question, get 6 different answers...if one doesn't work, there are 5 other things to try.
Welcome to the club nobody wants to join....You are in fine company, tho.....great people here....supportive, kind, and very very smart.
p
PS....learning to fall asleep at any time, during any activity, in any position is wonderful for us the patients....it will probably drive you crazy, don't worry about it....it's a great escape
. Thanks for your reply! I have already read almost every link from the Superthread and have a list of things he may need. It will be interesting to see what the RO and MO recommend vs what patients recommend. You'd think at some point the oncologists would learn from the patients. I feel very prepared going into the meeting with the RO and MO - I have a very long list of questions that cover everything from mouth guards during radiation to speech/swallow therapist referral. My husband said last night that he hopes we don't come across as knowing more than the oncologists. My response was that as far as being an advocate for him and how to deal with side effects, we may very well have learned more from reading this forum than the oncologists know. Perhaps we'll be pleasantly surprised. Regardless, I'm his caregiver and chief advocate and I will do whatever it takes to get him the best treatment and care. I will definitely share people's responses with him so he can better understand that everyone is different.
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Nancy,
Nancy,
i went into into every appointment with a notebook and a list of questions for the doctors. I often had questions they couldn't even answer. and sometimes I knew more about the scheduling coordination than the various doctors did. But I did not care. I was, as you said, my husband's chief advocate. I would have done anything, said anything, etc, to get him the best care. I even questioned protocols a few times and had things changed for the better. Whatever it took. I was not backing down. It was the biggest fight we had been in, and I was going in with guns blazing. I don't doubt you will do the same thing. Best of luck to both of you.
nadine
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I did watch this video....and
I did watch this video....and every other one I could find. I read so many forums. I thought my neck would burn slap up because I am so fair. I thought my mouth would have hundreds of sores. I thought the mask might kill me. Thought I'd be deaf and lose all my teeth. I'm exaggerating of course. Treatment was bad but it was far better than alot of people said and I imagined. It could get worse, its only been 6 months since it ended but so far I'm OK. Of course the docs said DONT READ, GET OFF GOOGLE!! How was I supposed to do that? I wanted to be "prepared". Bottom line was I was scared, everyone is. My side effects were much less than I thought they would be. Just saying.
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Need a LIKE Buttonkdot2003 said:I did watch this video....and
I did watch this video....and every other one I could find. I read so many forums. I thought my neck would burn slap up because I am so fair. I thought my mouth would have hundreds of sores. I thought the mask might kill me. Thought I'd be deaf and lose all my teeth. I'm exaggerating of course. Treatment was bad but it was far better than alot of people said and I imagined. It could get worse, its only been 6 months since it ended but so far I'm OK. Of course the docs said DONT READ, GET OFF GOOGLE!! How was I supposed to do that? I wanted to be "prepared". Bottom line was I was scared, everyone is. My side effects were much less than I thought they would be. Just saying.
Thank you so much for your response. You just described my husband. I've been with him through five orthopedic surgeries, including a partial shoulder replacement two years ago and double knee replacement (on the same day!) last August. So I know how tough he is, including having a very high pain threshold. I've never seen him like this - truly scared. And I don't want his fear driving any decisions regarding his treatment plan. So I'm doing what I can to make him understand that he can't predict side effects. He needs to choose the best options available and just get through it. Easier said than done at this point.
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Another LIKE Button neededMrsBD said:Back to Normal
The video shows a journey that was similar to the one I began a little over 2 months ago. It's hard to imagine anyone who would not be terrified of a cancer diagnosis. Waiting for treatment to begin is very nerve-wracking, but once you know the plan and get started, the days turn into weeks, then months, and before you know it, you'll be giving advice to the newcomers on this site. My treatment consisted of 33 sessions of IMRT and 8 infusions of Erbitux, but no surgery. Today, I feel blessed to be pretty much my old self with very minor issues. I'm glad you found this site because you'll get a wealth of information, advice, support and prayers. It will be okay.
I'm sure that knowing the plan will take away some of my husband's anxiety. Although knowing potential side effects, I'm sure he'll be bracing himself for the worst ones.
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caution
Hi Nancy,
I did not click the link. There is a common saying around here - Do NOT google the internet! There is so much misinformation out there you are likely to be far more misdirected than guided along the proper path for YOUR situation.
My response was that as far as being an advocate for him and how to deal with side effects, we may very well have learned more from reading this forum than the oncologists know.
We are not doctors or trained oncology specialists. It would be very unwise to give more weight to anything said here over an opinion over a trained and experienced oncologist. Many oncology doctors are not as aware of various options for managing patient's side effects as that is not their primary focus of training. Quite a few do prescribe various medications to ease the side effects but their primary goal is to KILL the cancer.
It is fine to be as educated and aware of the range of side effects but each person's reaction to the treatments is very different and no one experiences all the potential side effects. Some barely experience any. Rather than get overly worried or stressed out, watch out for new symptoms then start that symptom addressed. Good luck!
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Thank youdonfoo said:caution
Hi Nancy,
I did not click the link. There is a common saying around here - Do NOT google the internet! There is so much misinformation out there you are likely to be far more misdirected than guided along the proper path for YOUR situation.
My response was that as far as being an advocate for him and how to deal with side effects, we may very well have learned more from reading this forum than the oncologists know.
We are not doctors or trained oncology specialists. It would be very unwise to give more weight to anything said here over an opinion over a trained and experienced oncologist. Many oncology doctors are not as aware of various options for managing patient's side effects as that is not their primary focus of training. Quite a few do prescribe various medications to ease the side effects but their primary goal is to KILL the cancer.
It is fine to be as educated and aware of the range of side effects but each person's reaction to the treatments is very different and no one experiences all the potential side effects. Some barely experience any. Rather than get overly worried or stressed out, watch out for new symptoms then start that symptom addressed. Good luck!
Thanks for your advice. I don't think the video is misinformation. It documents one person's treatment so it's factual for that one person. To your point, each person reacts differently so I'm trying to get my husband to stop thinking about what he saw. Many of those side effects may never happen to him. I was just trying to gauge how "realistic" it was. I've now moved past it and am focusing on finalizing the treatment plan.
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Back to Normal
The video shows a journey that was similar to the one I began a little over 2 months ago. It's hard to imagine anyone who would not be terrified of a cancer diagnosis. Waiting for treatment to begin is very nerve-wracking, but once you know the plan and get started, the days turn into weeks, then months, and before you know it, you'll be giving advice to the newcomers on this site. My treatment consisted of 33 sessions of IMRT and 8 infusions of Erbitux, but no surgery. Today, I feel blessed to be pretty much my old self with very minor issues. I'm glad you found this site because you'll get a wealth of information, advice, support and prayers. It will be okay.
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getting to know you
Nancy24,
It was very accurate video (especially for him). Just take all your information and catalog it mentally for the chance it may come in handy. Don’t borrow trouble, but be prepared.
There are no great secrets, just a bunch of us trying to get through and get along and if your taste and saliva come back (and the cancer doesn’t) you are ahead of the game.
Tell him to drink lots of water and swallow often.
Matt
P.S. I did have bad neck burn and used Silver Sulfadiazine Cream very successfully.
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