My son just diagnosed with stage 4 SCC HPV related cancer

Chris50

Hi DND,

Hi DND,

My heart goes out to you as you watch your son begin this journey.  I completed my treatment October 12 for HPV H and N cancer with involvement of left tonsil and 1 lymph node.  treatment consisted of 7 weeks with 35 IMRT rads and three high doses of Cisplatin.  My lymph node loosened after week one of chemo with rads, and initial laryngoscopes was ruled favorable by the MDs.  I had my first 3 month PET today, and now find myself managing the anxiety of not knowing results.  The treatment was difficult, but i worked for about 5 out of the seven weeks.  I found i needed to find my own balance during the treatment between caring for myself and staying engaged with the world.  Hope that helps.  I know there are a variety of experiences on this network, but the HPV marker suggests a favorable Prognosis.  We are survivors here, and this forum will be a great support to you and your son.

Lalitms

RottiesMom said:

Success story

I will be 61 years old on Thursday, on no medication, and in great physical shape.  In May I was diagnosed with SCC Stage IVA tonsil cancer metastized to 2 lymph nodes.  A petscan showed cancer no where else.  I underwent 35 radiation treatments (7 weeks), 3 cycles of cisplatin 3 weeks apart concurrently, ending August 16.  I had no surgery.  A petscan in November showed no evidence of cancer at all (not even any residual "light ups).

Joanne

Joanne ..thanks for sharing

Joanne ..thanks for sharing your story. My 43 yr old non smoker very healthy husband is currently getting 35 rads / 3 cisplatin for non hpv related stage 3 scc. 9 rads and 1 chemo to go. He has terrible side effects but that is expected. As we are nearing the end of treatment. I am anxious. I need some surety that this treatment is working..the doctor says have to wait till 2 months after the treatment. As a patient did you get any indication that your treatment is working?

Thanks and good luck

Nwife

rcaulder said:

Success

HPV cancer responds well to treatment. I was HPV stage 4  Tonsill cancer May 2015 with bilateral lymphnode involvement. 35 radiation treatments and Erbitux. No surgery. Very hard course of treatment, but all is well. I was stubborn also and worked through treatment.  He'll be ok. Trust in the Lord. 

Your. Experience

I noticed that your diagnosis is similar to my husband but he seems to be struggling so much and he had his last radiation treatment on Oct 21, 2016.  He received 42 rads and 7 weeks of Chemo given once a week on Fridays  He never had a feeding tube and has lost so much weight it is frightening  177 to 133  he just keeps losing and his throats is still so very sore I read the blogs here and pray he was treated appropriately.  i have read so many entries on this sight and it seems my husband is not making the same gains as others and does not seem to be healing at all.  How long after your last radiation did your weight begin to stabilize and your swallowing become easier?

 

DefianceNotDefeat

Update

Hi all, thank you for all the answers you brave souls. My son started chemo and radiation this week. He's lost 15 pounds in just this week alone and while muscular and in good shape he is having a hard time eating or drinking. He had a license to smoke weed, which seems to be the only thing that works for his nausea. The problem is he can't drive after he smokes. He is still going to work. He has options but he's hit the anger stage. The government won't cover his anti-nausea meds (40 dollars a pill) because he didn't file his 2014 taxes. A friend has offered to do them for him. He is refusing. He lives with his boss, who can cover his meds but he won't ask him to. Right now my mom and I are helping pay his bills but I'm worried about this anger. It is stopping him from getting as healthy as he can and make the right choices. I'm hoping that this passes.

My main questions are - he can't keep even water down. What are his options for nutrition? I want to give him some viable food options so he maintains a healthy body. Ensure? Will that be his best option? What have other people done when they cannot eat and has anyone else gone through a brief period of anger?

 

What can I send him in a care package?

 

Oh and after this week of radation his timors are shrinking.

 

I just wanted to again thank everyone here for your kindness, your stories and most of all the bravery I see. It is so uplifting.

 

CivilMatt

DefianceNotDefeat said:

Update

Hi all, thank you for all the answers you brave souls. My son started chemo and radiation this week. He's lost 15 pounds in just this week alone and while muscular and in good shape he is having a hard time eating or drinking. He had a license to smoke weed, which seems to be the only thing that works for his nausea. The problem is he can't drive after he smokes. He is still going to work. He has options but he's hit the anger stage. The government won't cover his anti-nausea meds (40 dollars a pill) because he didn't file his 2014 taxes. A friend has offered to do them for him. He is refusing. He lives with his boss, who can cover his meds but he won't ask him to. Right now my mom and I are helping pay his bills but I'm worried about this anger. It is stopping him from getting as healthy as he can and make the right choices. I'm hoping that this passes.

My main questions are - he can't keep even water down. What are his options for nutrition? I want to give him some viable food options so he maintains a healthy body. Ensure? Will that be his best option? What have other people done when they cannot eat and has anyone else gone through a brief period of anger?

 

What can I send him in a care package?

 

Oh and after this week of radation his timors are shrinking.

 

I just wanted to again thank everyone here for your kindness, your stories and most of all the bravery I see. It is so uplifting.

 

it is a bear

DND,

There are many high calorie supplements you can add to or eat or drink, but he is nauseated and cannot keep things down.

The nausea would seem like the first hurdle and his nurses and doctors should be able to address this with  multitude of products, meds or ideas and solutions.

Hydration and nutrition or lack thereof can be the biggest asset or liability of treatments.  Lack of will almost certainly require a trip to hospital.

Part of successful treatment is mind set, we all went through it and it is different for each of us.  To be defiant about what is happening will not serve you well.  You got to take all the hints and what works best and power through the side effects or follow faithfully a sequence of actions that work for you every day. 

It is not easy, but you have to do what works and save what energy you have for what’s around the corner.

I was more scared then angry at the beginning and as adaptable as I could be once the problems began.  Being angry did not work for me.  don’t get me wrong, I wasn’t happy and I wondered why me, but…..

Matt

donfoo

Early days

Hi,

Sorry to hear he is having a rough start. Usually most get a couple week easy ride before things get rougher. Is there any reason he doesn't participate directly here? Being directly involved with the folks here would be more helpful to him. It is a long road so he must stay mentally and physically as well as he can for as long as he can.

Unfortunately, the vast bulk of his care now is focused on killing cancer and gettimg him well, as it should be. He can be referred to therapy but he should get more support now to help him cope. 

mrspaul

My husband was diagnosed with

My husband was diagnosed with tonsil cancer - SCC stage 4A HPV+ in July.  We are in the states - Massachusetts and going thru Dana Farber Cancer Center.  My husband had the tonsils out - but the left lymph node was so enlarged they could not do surgery on it.  My husband had three aggressive rounds of chemo - spaced three weeks apart and had a four day at home chemo pump after each chemo day - three chemo meds - it was a seven hour chemo treatment each time.  Then the scans.....NED - no evidence of disease!  But had to have the radiation to keep the cancer from coming back - he is in his fifth week of 8 week radiation - five days a week - and has weekly chemo - just one chemo med this time.  Dana Farber told us they are confident once he finishes the radiation - the cancer will be completely gone.  My husband is suffering with the side effects of both the chemo and radiation -- has lost fourty pounds, having trouble swallowing - a lot of trouble swallowing.  my husband also has ice chips with him all the time besides swallowing water constantly, he is able to drink whole milk, almond milk and have a tiny amount of soup or mashed carrots at a time.  my husband is age 52 and beating this cancer.  your son will do it too - and your son is almost 20 years younger and sounds like he is in excellent shape.  Your son's age, physical shape are all in his favor.  A postive attitude is a must - my husband told the medical oncologist at the very first appointment - "Just so you know - I am not dying", "I need to walk my granddaughter down the aisle" -- our granddaughter is age ten !  Radiation has left my husband exhausted, terrible ringing in his ears, has lost his hearing from the chemo - lost his hair, armpit hair and all facial hair - and has burn marks from the chemo on his neck and arm pits - the burn marks developed before the radiation started.  Right now my husband is sipping a shake made from almond milk, vanilla ice cream, and whole milk - its going down slowly... -- Please let your son know lots of people are thinking about him and wishing him well.

 

ellen

DefianceNotDefeat

donfoo said:

Early days

Hi,

Sorry to hear he is having a rough start. Usually most get a couple week easy ride before things get rougher. Is there any reason he doesn't participate directly here? Being directly involved with the folks here would be more helpful to him. It is a long road so he must stay mentally and physically as well as he can for as long as he can.

Unfortunately, the vast bulk of his care now is focused on killing cancer and gettimg him well, as it should be. He can be referred to therapy but he should get more support now to help him cope. 

I wish he would but he does

I wish he would but he does value the advice. He is stubborn as a mule that one.

I should have clarified - he is not a self-pity type. He doesn't get angry over having cancer. He got angry the meds were not covered and this seems to have passed. He is amazingly postive throughout this whole thing. He has been going to work as often during the week as he can. He's been far more resilient than I gave him credit for. I'm just worried as he is far away from me. On your advice he has gotten himself a few cases of Ensure and has been eating as much as possible. I'm going to try to get him to post here, as he does really value the advice and the positive stories and all of the advice.

Isign4Him

Survivor

   Hi , I was diagnosed in may of 2012 with stage 4a scc that was advanced. I am 4 years out of tx and still NED. The recommended tx was a clinical trial and brutal is a nice word. I had  3 rounds of a 3 drug chemo cocktail including cistplatin and 5fu along with tax followed by 35 days of rads concurrent with chemo. I would be lying if I said it wasnt a battle. The important thing is for  you and Postive support is a must ! tell your son to stay positive and fight. I am almost 100% my taste is close to what it used to be and I am back scuba diving and enjoying life. My prayers tonight will include your son.

vanbcman

I am in Vancouver and Finished Treatments 1 1/2 years ago

I had HPV cancer on my tonsil and in two nodes in my neck. Firstly HPV cancers are as one doctor told me "on of our more curable cancers". I also had a friend with stage 4 head and neck and he is doing great 5 years later. This cancer stays quiet localized. Yes cancer is scary but he got one of the most treatable ones out there.

As for working everybody reacts differently to the chemo, surgery and radiation. You can't work because he will probably get 35 daily radiation treatments over 7 weeks except for weekends. Basically you need to set time aside for treatments and weight loss recovery etc. I strongly suggest a feeding tube like I got because swallowing will become an issue with the radiation on the throat. 

I wont talk about the side effects because the priority right now is getting him cancer free. I am 56 but HPV cancer is hitting people in their thirties now. 80% of the population has been exposed to HPV and 15% of them will develope cancer from it. So he is not alone this thing is exploding the nurse at my clinic told me.

 

 

 

Jennifer_J

My husband just finished

My husband just finished treatment for stage 4a throat&neck cancer it was in his tonsil and 3 lymph-nodes they suggested surgery at first but they ended up going with just an aggressive chemo/rad treatment. He did 6 weeks of chemo and 35 radiatio. I am very sorry about your son. He seems strong and stubborn and young he will probably do well with treatment. He will probably rethink working once he starts to feel the effects from treatment. Don't drive your self to crazy looking stuff up on internet I did the same but it's so hard since it's different for everyone. 

 

My my husband was against getting a feeding tube but he ended up having to get one due to dehydration. It is easier to put his meds in it as well. your son prob won't want to do this but just be open to it. It was scary and we didn't know anything about it but it has been very helpful to him. He is also pretty young only 44 and thought he could work again in no time but that's not the case. Your son just needs to know his limits and don't push it to much it's important to rest. 

 

I know you are worried about being far away just make sure you talk/text often .  Does he have someone close to help him?? i know your worried but be thankful it was the hpv type they say it has a better prognosis and reacts better to treatment. everything is so different case by case but for us the after treatment was worse. He finished 12/19 but still has feeding tube and can't eat or swallow but it is getting better just slowly. You seem to be doing the right thing stay informed and take care of you. I forget this but it is so important you can't help him if you get ill or something from not taking care of yourself. You both will get through it. Good luck and God speed for his recovery

MMDowns

Husband diagnosed with SCC head and neck

Hello,

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. 

CivilMatt

MMDowns said:

Husband diagnosed with SCC head and neck

Hello,

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. 

welcome

MMD,

Welcome  to the H&N forum, sorry  that you are here and I hope your visits to the forum will help you.

Your husbands story (on cancer discovery) is very typical of many of us.  For me, no pain just a lump on my neck, sound familiar.

There are many meds  for nausea and your team will help you find what works best.  Remember to take nausea meds early and select a room close to the bathroom when checking in for chemo and bring a snack, something to read or do.  It goes by fast, but be prepared.

It can be a toss-up on what is harder chemo or rads, but generally rads is more long lasting and often with more permanent side effects (dry mouth, altered taste).

There have been members  who drive themselves to treatments and continue to work, I was not one of them.  It took most of my energy to meet this situation head-on.

Start drinking water, lots of water and swallowing often.

To get maximum input to your questions, feel free to start a new thread and introduce yourself.

Good luck,

Matt

MMDowns

CivilMatt said:

welcome

MMD,

Welcome  to the H&N forum, sorry  that you are here and I hope your visits to the forum will help you.

Your husbands story (on cancer discovery) is very typical of many of us.  For me, no pain just a lump on my neck, sound familiar.

There are many meds  for nausea and your team will help you find what works best.  Remember to take nausea meds early and select a room close to the bathroom when checking in for chemo and bring a snack, something to read or do.  It goes by fast, but be prepared.

It can be a toss-up on what is harder chemo or rads, but generally rads is more long lasting and often with more permanent side effects (dry mouth, altered taste).

There have been members  who drive themselves to treatments and continue to work, I was not one of them.  It took most of my energy to meet this situation head-on.

Start drinking water, lots of water and swallowing often.

To get maximum input to your questions, feel free to start a new thread and introduce yourself.

Good luck,

Matt

Civilmatt,

Civilmatt,

thank you for responding. Ive noticed your other responses on the thread and I really like what you say. It's hopeful and realistic. I will take your advice and start a new thread. Just reading others stories has helped. We our in our last stages of prep I.e. Feeding tube, meeting with a nutritionist and then the battle begins. I told my husband that the feeding tube was part of his "armor" for his battle.  Any bit of positivity helps. Thanks again and have a good evening. 

rsp

Nwife said:

Your. Experience

I noticed that your diagnosis is similar to my husband but he seems to be struggling so much and he had his last radiation treatment on Oct 21, 2016.  He received 42 rads and 7 weeks of Chemo given once a week on Fridays  He never had a feeding tube and has lost so much weight it is frightening  177 to 133  he just keeps losing and his throats is still so very sore I read the blogs here and pray he was treated appropriately.  i have read so many entries on this sight and it seems my husband is not making the same gains as others and does not seem to be healing at all.  How long after your last radiation did your weight begin to stabilize and your swallowing become easier?

 

Same situation

Hi,

When I read your post I felt like it could have been written by me!  My husband finished his 35 radiation treatments on 12/23/16 after being diagnosed with SSC on the base of his tongue.  He also had 5 chemo treatments of cisplatin (He was supposed to have 6 but he was so dehydrated and sick they stopped at 9).

Here it is 2 months post radiation and he is doing terrible.  He is worst than ever... He does not have a feeding tube and has gone from 254 pounds to 180. I think he needs to get a feeding tube put in, but he is insisting he does not need one.  He is 6'1" tall, and to me he looks like a starved prisoner.

He does not go for his followup PET scan until March 30th.  I feel like we are "on our own" from the end of treatment until we go for the PET scan.

I thought once treatment ended we would be making positive progress, but here we are 2 months post treatment and he is really struggling. He says his throat and tongue are "on fire" and just last week he said his ear feels clogged and his jaw is hurting... ugh...

He takes gabapentin (9 a day), various other meds for nausea and sectetions, and oxycodone (30 mls every 4 hours) for pain, yet he tells me his pain level is still a 7 or 8 out of 10.  He can't eat anything other than shakes.  It takes him ALL DAY to finish one shake.  He is only getting about 1500 calories in a day... 

When I tell the dr. about his pain he tells us to "increase the pain meds"... but I am hesitant because my husband is already "out of it" due to the pain medication he is already taking.  It is all very frustrating.  I fear my husband is getting depressed because he is not making progress.

I am so sorry we didn't get a feeding tube in the beginning.  It was not offered at the hospital we chose (one of the best in the country).  They insisted the pain medication would be enough to keep my husband eating, but this is not the case.  

I told my husband he has a few more days to prove he isn't losing any more weight or else I am calling the dr. and making an appointment to discuss a possible feeding tube.

My husband is 59 and he hasn't worked since week 1 of radiation.  I don't see him going back for quite some time.

While I am so sorry to hear about your husband, I am a little relieved to hear we are not alone in what we are going through.

I would be happy to keep in touch.  Haven't even touched on the "caretaker" topic... I feel like a drill seargent...between saying EAT,EAT, EAT, and TAKE YOUR MEDS, and DO YOUR MOUTH EXERCISES...  It is all very draining.

rsp

Nwife said:

Your. Experience

I noticed that your diagnosis is similar to my husband but he seems to be struggling so much and he had his last radiation treatment on Oct 21, 2016.  He received 42 rads and 7 weeks of Chemo given once a week on Fridays  He never had a feeding tube and has lost so much weight it is frightening  177 to 133  he just keeps losing and his throats is still so very sore I read the blogs here and pray he was treated appropriately.  i have read so many entries on this sight and it seems my husband is not making the same gains as others and does not seem to be healing at all.  How long after your last radiation did your weight begin to stabilize and your swallowing become easier?

 

Same boat here

Hi,

When I read your post I felt like it could have been written by me!  My husband finished his 35 radiation treatments on 12/23/16 after being diagnosed with SSC on the base of his tongue.  He also had 5 chemo treatments of cisplatin (He was supposed to have 6 but he was so dehydrated and sick they stopped at 9).

Here it is 2 months post radiation and he is doing terrible.  He is worst than ever... He does not have a feeding tube and has gone from 254 pounds to 180. I think he needs to get a feeding tube put in, but he is insisting he does not need one.  He is 6'1" tall, and to me he looks like a starved prisoner.

He does not go for his followup PET scan until March 30th.  I feel like we are "on our own" from the end of treatment until we go for the PET scan.

I thought once treatment ended we would be making positive progress, but here we are 2 months post treatment and he is really struggling. He says his throat and tongue are "on fire" and just last week he said his ear feels clogged and his jaw is hurting... ugh...

He takes gabapentin (9 a day), various other meds for nausea and sectetions, and oxycodone (30 mls every 4 hours) for pain, yet he tells me his pain level is still a 7 or 8 out of 10.  He can't eat anything other than shakes.  It takes him ALL DAY to finish one shake.  He is only getting about 1500 calories in a day... 

When I tell the dr. about his pain he tells us to "increase the pain meds"... but I am hesitant because my husband is already "out of it" due to the pain medication he is already taking.  It is all very frustrating.  I fear my husband is getting depressed because he is not making progress.

I am so sorry we didn't get a feeding tube in the beginning.  It was not offered at the hospital we chose (one of the best in the country).  They insisted the pain medication would be enough to keep my husband eating, but this is not the case.  

I told my husband he has a few more days to prove he isn't losing any more weight or else I am calling the dr. and making an appointment to discuss a possible feeding tube.

My husband is 59 and he hasn't worked since week 1 of radiation.  I don't see him going back for quite some time.

While I am so sorry to hear about your husband, I am a little relieved to hear we are not alone in what we are going through.

I would be happy to keep in touch.  Haven't even touched on the "caretaker" topic... I feel like a drill seargent...between saying EAT,EAT, EAT, and TAKE YOUR MEDS, and DO YOUR MOUTH EXERCISES...  It is all very draining.