Hi, I'm Laura and my husband was recently diagnosed with SCC of the tonsil extending into the base of his tongue and soft palate. He has bilateral involvement of the nodes but the PET indicates it is confined to the neck region. He is scheduled to undergo 7 weeks of radiation and will have weekly chemo. He is healing from fairly extensive dental work so for now we wait for treatment to begin in earnest.

I am a pediatric nurse so I feel somewhat equipped to deal with the healthcare system and boatloads of medications but am out of my element in terms of adult nursing and oncology.

We have a couple of young kids ages 9 and 11. Feeling pretty crappy right now but everyone on this board can understand that.

Has his slides been tested for HPV?

Try not to worry - if he is HPV + it responds very well to radiation & chemo. As for nursing him - priority is eating ( get him to add some pounds now if you can) - let him enjoy the foods he loves! And lots of them. Head & neck rads makes swallowing painful and taste buds run for cover for a long while - he should be okay up to week 3 or four then things get dicey. Ensure and boost got me through the worst of it. Trying to maintain his swallowing reflex is important - they may peg him so he should still try to swallow even just water if he can!! Hydration and nutrition are important throughout treatment - and added protein as well. I used to toss a scoop I'd protein powder into my ensure once a day. Rads is cumulative so the worst time is actually the two weeks following radiation. Chemo depending on the person is either okay (minor nausea) or really bad - it depends on how the person handles it. Pain management is also important but there will be a bunch of scripts so not to worry. Also have his tsh levels tested prior to treatment so you know what's nomal for him - if he's taking antioxidants stop them now - they interfere with radiation. Depending on his skin type (fair skinned tend to burn and blister the most) so invest in a good cream. I'm sure if I've missed something others will join in and share - Sorry you have to join our group but when're here for support if you need it. Take care!

I looked at the biopsy path report - moderately differentiated scc. It did not mention HPV status but I'll be sure to chase this up. Thanks. Didn't ask about prognosis, which HPV status impacts, because at this point he doesn't really want to know. "The treatment goal is cure."

He is going to get a peg at the start. I told him to consider it insurance or a best friend, whatever. He's says he's not too troubled by the prospect. He's a slender but powerful man who carries muscle but no body fat. He's moderate in all things by nature, including food intake, but is putting effort into eating more and I'm adding butter and cream to everything. Plus high protein foods. He's gained 2 kg in the past 3 weeks in spite of having many teeth out. I'll add TSH to the list. He takes a multivitamin but what specifically are you meaning when you say antioxidants?

He's being very diligent about everything that has been asked of him so far. I think he will make a good patient - like when they tell him he has to continue to swallow even with a perfectly good peg in situ, he'll do it. What I DON"T think he will do is chase down his own information, he'll just do as he's told and try not to think about it. That's where I come in.............Thanks for your prompt replies. Really appreciate it.

Hi Laura and welcome from a fellow Australian.
Please add a signature when you have time.
Its easy, click on the "My Stuff" tab, then on the drop down menu, click on "Profile". Scroll to the bottom and type in the white box, click "Submit".
It will help others here to help you.
As I had surgery only I will leave it to my fellow OCF'ers to answer any of your questions re rads. and chemo.
Where in NSW is he being treated?
Again welcome to what will become an invaluable source of information and support for you and your husband.
Good luck to you both.
Gabriele

Hi Laura, I am so grateful that I happened upon this forum, and you will be too. Like your husband, my brother, who finished radiation treatment 3 weeks and 2 days ago, didn't/doesn't want to know about any of it, just wants to get on with being well.

Like you, he and his wife have young children (they have four from 3 to 13yo), and his wife has her hands full just keeping things normal for the kids. Often it is the caregiver who is on the forum, rather than the patient. Your husband may like to eventually read responses to questions you ask of the forum, rather than post himself.

As Cheryl, says get him to fatten up as much as possible. Simon went from being a very fit, gym-going 47yo of 82 kilos, to looking like our dad at 70, because of the 15kgs weightloss!!

You must be very worried, but this disease can be beaten, and having good support is very important - having a medical person in the family is a bonus !! I got your PM and I have replied. I'll be thinking of you.
Linda

Laura, there are some supplements that you need to be careful with as they can help the cancer as well as the healthy cells - vitamin E has been shown to increase the chance of H&N cancer recurring if you take it during or even after therapy. Other supplements may decrease the effectiveness of the therapy itself, as Cheryl mentioned. Make sure you list everything he takes and run it by your team.

However the HPV determination comes up, remember that part of the outcome rests on how closely the treatment plan is followed, and how healthy the person is to begin with. It sounds like you've got both those points covered! If he is a smoker or smokeless tobacco user, he needs to quit now.

Remember to care for yourself, as well!

Hi Gabriele. He's being treated in Gosford. Our radiation oncologist has an interest in head and neck cancers and practiced in Hong Kong where he got a lot of experience with nasopharyngeal carcinoma. Haven't met the medical oncologist yet. If he needs to have surgery at some point I imagine I will steer it towards one of the major centres in Sydney.

Thanks to all of you for your support.

Thanks for the advice Maria and Cheryl. He takes a daily multivitamin and that's all. That can be ditched easily. I intend to get him in to see a dietician ASAP because he just doesn't have the weight to lose. He was a very light smoker but quit 13 years ago. Drinks one glass of red with dinner, never more. No drugs, gets enough sleep. Healthy as a horse. This came as a big shock.

Welcome to OCF. Glad you have found this site to help get you thru your husbands treatments.

Prior to starting rads, its a good idea to get a full blood count. This way you will know what your husbands normal numbers are to compare it to later. Get dental trays made for flouride trays. Get a hearing test done. Cisplatin is known for causing high frequency hearing loss in many of our members. Most important is to try to get your husband to gain a few pounds. Eating will become a challenge for him, its only temporary. Even with a feeding tube significant weight loss can happen. There are many high calorie foods he can enjoy prior to the start of radiation. Cheesecake, milkshakes and puddings are all high calorie easy to eat foods that can help him to gain a few pounds.

Hi again Laura,
Thank you for adding the signature. You are already getting great advice both here and on your more recent thread.
I know your area well but I am not sure if Gosford Hospital is a Comprehensive Cancer Centre facility. While reading here you will often see the necessity to have a multidisciplinary team and be treated at a CCC. I am sending you a PM (Personal Message) with a link that goes in to more detail. It is actually from the Northern Sydney and Central Coast Health Service. I went to Westmead which also is a CCC hospital.
I see so many similarities between you and Karen , another OCF member/carer (and friend) with experience at the RNS. She is also an ex nurse and will be able to help not only with all the technical stuff but also with the local knowledge that is also be very important. I will contact her and let her know you have joined and I know she will post when she can.
I will also PM you her link as you may want to do some reading in the meantime.
Best wishes to you and your husband.
Gabriele

[quote=lam007] He is healing from fairly extensive dental work so for now we wait for treatment to begin in earnest. [/quote]
I just read your signature again and went back to your first post. Just a question but how long do they expect the healing to take and are you familiar with HBO (Hyperbaric oxygen therapy) which aids the healing process?

Hi Laura

As a paed nurse, you will have an advantage in understanding the significance of what you are told by doctors. In my opinion adult nursing is just taking care of bigger kids . The big difference between them is that kids often can't articulate what they are feeling and adults can't articulate what they are feeling either but think they can.

A classic example: Alex tells the doctor that he feels pain and burning here (centre point just under his rib cage), doctor enquires no further and recommends Mylanta which didn't help Alex at all. Alex was trying to describe nausea not reflux and did not get around to telling the doctor that burning usually resulted in vomiting which was the key point.

The other thing that adults do is self diagnose, so they unconciously filter the information they give healthcare professionals sometimes resulting in wrong diagnosis and treatment.

Our example: Alex decided he had a decaying tooth so went to the dentist and told him that he had a sore tooth and wondered if there was an abcess. Dentist pulled the tooth but mentioned that he thought there was more going on and referred to ENT. Alex failed to mention that he had a sore throat and was struggling to swallow. Result? A regular referral rather than an urgent appointment and a delay of over 2 months.

Been here - me too! Good luck... And the multi is probably okay just show it to your rads person! Take care!

They are giving his mouth two weeks to heal and for the swelling to go down before making his mask. He saw the dentist yesterday and things are healing as expected, no delays so I assume no need for hyperbaric. The dentist did think there is swelling along the jawline that wasn't there before and isn't a result of the extractions.

His rad onc has been pushing things along, including getting prompt appointments with the medical oncologist of his preference, rather than first available. He has also been liaising with the dentist from the start. I get the impression that the team isn't going to delay treatment until after the holidays. Or at least that is my hope.

Trying really hard to get him to pack on the pounds and his effort is commendable. I am looking at Paula Deane recipes..........just reading them makes my arteries feel all clogged up. High protein things, too. Protein and sheer calories.

Karen, I've never done adult nursing and have no desire to start. Adults are big, stinky and gross.

Glad to hear things are moving for you - I'm an advocate of expedience - some drs will say - don't worry cancer can't and won't move that quickly - but everyone is different, every cancer - though they tend to follow similar patterns - reacts to the individual differently. so no dr. Can tell you that for certain and if they do - then I would seriously question it. It sucks that Christmas won't be great - but hopefully because of the speed they are moving - he'll have many more to come. Hugs!!! (and yes you're right - I used to work as a nurse... Adults are stinky and gross... loved L&D and surge, and pediatrics! )

+-head and neck cancer currently being treated with weekly chemo pain getting worse in left jaw advise

Hi Laura,

I am sorry that you and your husband are beginning this journey, especially with a young family and at this time of year - being the vacation season in Australia. I was diagnosed with stage 4 tonsil SCC in late December 2002 when many consultants were closing for holidays. I want to offer you encouragement because I completed my treatment in May 2003 and have been cancer free ever since. I had surgery and radiation. There is no doubt the radiation saved my life.
I would suggest that your husband has a thyroid function test before he begins rad, I was found to be severely hypothyroidic after treatment but whether I was prior is not known so I may have begun treatment under par.

Like Gabriele, I am a little concerned about being treated at Gosford hospital only, I was treated at the Westmead head and neck cancer unit where all the dentists and doctors are oral cancer specialists. I believe the Newcastle Uni hospital is excellent.

I wish your family well and am so pleased you have found this site, wonderful members here will support you through your journey.

Helen

Hello, Laura.
I'm sorry you have to be here, but you are in the best place for your given situation. Plain and simple...it stinks and there's no way around it if you want a cure. It seems like you and your husband are in good hands, with a good plan. Caring for family members is taxing. Please be sure to take time for yourself. When others offer to help, take every bit you can get! Often, those who are willing/able to help need to be given specific tasks...pic up/deliver groceries/scripts, rides for appointments and for children's activities.

When I was sick, a friend of mine directed me to a website that can help manage your own community of "helping hands". Basically, those who want to help sign up for specific tasks that you post on a calendar. A friend of mine was kind enough to manage it for me, as I was too ill and my husband was busy working and taking care of me and my 2-year-old. If you'd like the specific website that we used, I can send it to you in a private message. If you do not care for yourself, then you won't be much good to your husband. No matter how good your relationship may be, this is probably one of the most stressful trials a couple and family can endure. It can be done...has been done...hopefully never having to be done again!

Best of luck in this journey. I will keep you in my thoughts. Here's to beating this thing and putting in its place!

:)Kerri

The pain may be related to the chemo, but we really need more information, location, type, etc... Good luck!