I am just introducing myself. My husband has had 9 of 33 RTs. The MO and RO told him to expect a sunburn on the outside of his neck and the fatigue would probably be too unbearable to work after 4 weeks approx. He is very fatigued already and can't hardly eat anything. We were never told about the possibility of feeding tubes being required.

I've been reading the boards and learning some food ideas.

Thanks. This board is very helpful.

Welcome to OCF, Stacey! Glad you have found this site to help you both get thru everything. Im sorry your husband is beginning to feel the effects of his treatments.

Nutrition and hydration will play a huge role in how easily he gets thru this. Every single day he needs at least 2500 calories and 48 oz of water. If he does not have a feeding tube this can be tough to get down especially when his throat is sore. On the main forum pages there is a green box for Amazon. If you click that and go thru this for shopping, OCF will get a 6% kick back which can greatly help us to help you. The reason Im telling you about the link is that when I was doing radiation I would use Carnation very High Calorie, this is now made by Boost. Its still the same price about $44 a case. Each can is 560 calories so that may be something you would want to order for him to drink. If he is still able to eat he may be able to eat away with only about 3 of these per day for now. If things get more difficult for your husband, then he would need to drink 5 a day to get enough nutrition.

Along with the feeding tube (which can still be given if necessary) there is the nasal tube. That one requires no surgery and its more of a temporary measure. Keep that in the back of your mind if you see him begin to really struggle with his intake. Pay very close attention to what he takes in so he doesnt over estimate his intake. When feeling bad, a patient can easily think they have taken in enough. It happened to me and I should have known better.

Best wishes with everything!

Christine,

Thank you for the wishes and thoughts. I will use the Amazon link for all of my purchases in the future. I've been trying to watch his intake but he is not so happy about that.

I know that nutrition is very important. He has been drinking apple juice and sweet tea but not very much.

Is there a reason that 48 ounces of water is required during this time? I might have better luck with him if I can explain the reason.

Thanks again!

Hi there welcome. You do not want your husband to become dehydrated and malnourished - that's why nutrition and hydration is so important. It's the building blocks of healing. Tell him to try smoothies, a little fruit, dairy or almond milk, and some protein powder. It will help him. Feel a little more energetic. Otherwise he will end up in the hospital. Hugs and best of luck. Most of us have been there so we know what he's going through. Take care.

Most if not all of our cancer docs have always told us 48ozs of water a day not counting those consumed with food. Trust us he will make it much easier on himself if he (and that means you as the enforcer) consumes at least 2500 cals and 48 ozs of water each and every day from now until at least the end of his first year POST Tx. Always keep in mind that each person can react differently to this Tx but my guess would be that 80% of us really really suffered from week 4 thru week 3 post Tx. Most all of us lost a significant amount of body weight whether or not we had a feeding tube so please make sure he understands the importance of this.

Also does he have Fluoride trays?

Make sure his TSH levels are tested and recorded for possible future use.

No mention of chemo but I'm sure he will have it. What kind?

Were his cancer cells tested for HPV?

All of this is good advice, Stacey. I found that after perhaps 2 weeks of rads I was only able to eat a liquid diet. For me it was the Ensure clones, of which there are many and they will all keep you going.

David CPA is one of the real experts here and I never disagree with him (honest, David!), although in this case I find one teensy little point of departure. That is: I had surgery and radiation but my team did not feel that I needed chemo, and they have been proven right (so far, nearly 4 years out). In my case it was decided because the cancer had not spread outside the 2 malignant nodes, i.e. extra-capsular spread.

From reading many of these posts I've found that this is not entirely uncommon. But as always I'm looking to learn from those who know more.

At any event, I wish you and your husband all good things during this difficult treatment. With your help I know he'll make it through. And please do ask us any questions no matter how trivial they might sound to you. Someone will usually have an answer or at least be able to point you in the right direction.

My husband balked at having to drink so much until he realized that on days he did not get enough fluids, he felt nauseous and really crappy. The feeling is not pleasant at all. Even half a day of not getting enough fluids can throw him off. Now I keep a running record on the ipad of how much fluids and calories he has taken in and show it to him at about 3 p.m., and if it is not enough, he will still have time to make it up.

I would put out 4 bottled waters every night. Next day it was up to me to finish those water bottles in that day before putting out 4 more for the next day.

Cheryld,

Thank you for the advise. Greatly appreciated.

Hi Stacey,
I'm sorry you and your hubby are going through this battle, but very glad you have found us. You will not be alone the rest of your journey!!
One of the things DavidCPA pointed out was that this pain and whatnot will last for most likely up to 3-4 weeks AFTER the end of tx. If your hubby is having so much pain already, I'm thinking a feeding tube might be in order. Talk to your docs and see what they say, then go for it. It grossed my husband out, but he did use it a few times when things were really bad. He put some of his liquid meds in it too!!
Something we did with the fluid thing...our nurse said one of the signs of dehydration that was easy to find was a low bp, so we got a home bp kit and when he got crabby or groggy I would take his bp and almost every time it was very low so he would have no choice but to go to the docs for fluids. If he can't drink enough and the tube doesn't work either, you can check with your ro and see if they can set him up for fluids a few times a week. We did this throughout our induction chemo and also through rads. Not all docs do it though.
Christine is right, he will need to keep up with the nutrition as well as the hydration in order to stay out of the hospital, but you, as his caregiver, can only do so much. Our guys can be stubborn and sometimes just have to learn the hard way.
One of the foods Kevin could eat for most of his tx was scrambled eggs that were a bit runny. Not gross runny, but just enough that they could slide down! He also ate pasta with lots of butter, also slid down nicely!
I know this is a scary, exhausting and frustrating situation for you and it really sucks, but you can do it. There are many caregivers here who will be here for you. We've all been there and know EXACTLY what you are going through.
I hope this helps a little. Everyone will tell you to try to take time for you. You do need to do that, but sometimes just an extra long hot shower and a good cry would be all I would need to go forward!
Blessings Lady. Hang in there.
Kathy
PS...the 4 bottle idea is a great idea. I think it helps when you know the goal and can see yourself accomplishing it. If you can get past your stubborn self!! ;o)

Hi David,

His MO did not tell him about the water but I will make sure that he has 48 ozs a day.

He does not have flouride trays. He had one flouride treatment with a regular dentist prior to Radiation.

I don't know what TSH is.

They are not doing Chemo even tho the ENT and MO both initially mentioned it prior to the PET Scan.

He was tested for HPV and is HPV16 positive. (I think the HPV+ is possibly why they decided against Chemo).

Stacey

I'll let David deal with HPV as he is one of our experts
As for TSH, it's Thyroid Stimulating Hormones The Blood test for TSH can be done with the other blood test, all the doctor has to do is checking off two blocks on the blood test request: 866X- T4 Free, Non Dialysis and 899X- TSH.

I'm a bit of a nag on this issue because I got caught up in it.
If your husband does not have the actual TSH numbers from these tests , now, before finishing the radiation, even the smartest doctors in the world will just be guessing on what it should be. Why? The "normal " range is from 0.5 to 4.9 in some labs, and many endocronologists think 3.0 should be the highest. That wide range is meaningless for an individual, it's like saying normal weight for your height is between 100 and 200 pounds or maybe 250. Each weight can be normal for a thin ultra marathoner, or a burly football linepacker but not one for the other. So if the doctor says normal, it's meaningless to the individual if he does not have a pre radiation baseline.
If he gets his numbers now, then after radiation, they can check and see if his numbers are higher (which often happens and can be fixed with a pill)
So much information, so much worry, I am so sorry that you had to find this forum and that you are suffering through this. I know how hard this I found it and how hard it was on my wife.
This is a good place with good people, Welcome
Charm

Thanks to everyone! I appreciate all advice and helpful hints. It is very helpful to me to know that I can talk to others about this.

Hi, Stacey,
Where in Ohio are you? And where are you being treated? I got the fluoride trays and a feeding tube after my surgery and prior to my treatments. I did have chemo, as well, but my primary was on my tongue and my cancer was stage IV. I also had a port put in for my chemo. You will find a lot of support on this site, and you will "meet" some amazing people. Good luck to you and your husband on this journey. Caregivers are very special people. I couldn't have made it without my husband's care.

Hi Zengalib,
Thanks! We are in Cincinnati area and the treatment is by Oncology Hematology Care. They told me my husband would have been Stage IV if they found a Primary Tumor. My concern is it seems as tho the Radiologist, that read the PET Scan, thinks there may be a neck mass but the MO discouraged the radiologist from outright stating that on the report (MO seemed to think it was all b/c he had surgery earlier). The radiologist wrote on the report that it could be due to surgical activity or it could also be a mass.

http://fnic.nal.usda.gov/fnic/interactiveDRI/index.php

Here is a link from the USDA for Health Care Professionals containing an "Interactive Dietary Reference Intake" by age, gender, activity. There are daily intake requirement Guidlines for oncocology patients too, who may have metabolic changes from the tumor itself, surgery, radiation, chemo that may increase Resting Energy Expenditure(REE), so the daily intake may be more. Head and neck patients may be more malnourished for these, and other reasons, but more in extreme excess is not good either since excess nutrients can feed cancer, and excess protein puts a burden on the kidneys due to them emliminating the Ketones in the urine, which may also contribute to dehydration, so if more protein is needed, so should the water.

The input for my age, 51, height 5'10" 180 lbs, and a sedentary lifestyle, showed I need the below daily requirements, but other input is not included, like tumor, type of chemo to flush out kidneys, etc. Its nor far off from another calculator for water, which comes to about 1/2 your body weight in ounces. Mine was 90, plus more from food. I also read elsewhere that 80 percent of your water need should be liquid by mouth, and 20 percent by food for cancer patients.

Caloroes: 2438
Protein: 65g
Fat: 54-95g
Carbohydrate: 274-396g
Total Water: 3.7 liters (about 16 cups = 128 ounces)

I hope this helps

Paul,
Thanks so much. My husband is 55, 180 lbs, 5'10" and sedentery. I appreciate the help.

Thanks

Hi KP5,

Thanks. It is great to have a place to talk to fellow caregivers. We have sons (in their early twenties) that leave the room if I cry. No one wants to hear the possible 'bad' side of any of this. I am totally different and I would want to know what could possibly be ahead so I would be prepared to fight it. My husband is already talking about stopping RT because he views it as prevention only. I am more determined to keep him in RT tho.

I will keep hanging in there.

RT is not prevention, it's the only thing potentially curable, besides surgery, and Chemo does not cure our type of cancers, it only assists radiation work better. Do you know how many lymph nodes were cancerous, and what levels in the neck they were from?

Stacey, quitting is NOT an option! Your husband hasnt even gotten to the difficult part yet. He needs to be educated about oral cancer! Many caregivers have their patients who dont want to know anything about the ins and outs of treatment. They dont do research and dont realize oral cancer is a deadly disease. I started out unaware but quickly learned that its not going to just go away on its own. It needs to be hit with all that is available to get rid of the cancer so it doesnt return. Many caregivers will print things out pretending they want to read them later, only to leave the papers where the patient will "accidently" find them and read the info. This would probably turn your husband around without you confronting him and it becoming an argument with him thinking you arent on his side of this.

Being a caregiver sure isnt an easy job!!! Dont forget to take some time every day even if its a couple minutes to walk around the block or a long hot shower to clear your head. You have alot on your shoulders and can use support as well.

Sorry to hear your sons dont understand everything either. Its a very hard thing for a child to be faced with their parents mortality. My children had a rough time of it too. My daughter didnt handle it very well at all (any of the 3 times I went thru it). She would cry everytime she looked at me and would tell me she didnt want me to die. My son was deeply affected as he ended up being the closest thing I had to a caregiver at the age of 17. Since your boys are in their early 20s please consider talking to them about getting the Guardisil shot to prevent the cancer causing strains of HPV (16 and 18). This shot is available to both males and females ages 13 - 26 (pretty sure this range is correct). It took me some convincing with my son, but he is getting his third shot of the series next month. I had my daughter immunized when it first came out and was controversial, I think she was 16. Since your husband's OC is HPV+ they may be easy to convince by telling them they dont want to get OC. There is tons of info about this and all kinds of other important things on the main OCF pages. There you can print things out about treatments and all kinds of other info.

So glad you have found the forum to help not just your husband but also you and your family get thru this. Dont worry, we are right here with you. Best wishes with everything!!!!

Stacey, do they have a spiritual/psychological support department at the center you are going to? It may be worth your while to go and talk to them and get some support.

We have been told that it's not uncommon for HPV+ SCC patients to not have a discovered Primary when diagnosed as the patients' immune system sometimes clears it after cells break off and lodge in the nodes. A very common HPV+ presentation is BOT or Tonsil Primary with mets to a node or 2 but again sometimes the Primary can not be located. Now radiation is the ONLY treatment that will kill this cancer. Chemo is often added when nodes are infected as the chemo weakens the cancer cells and makes the radiation more effective. You will hear anywhere from 5 to 20 % better kill rates with chemo but chemo alone will NOT stop this cancer from spreading.

Not nearly enough is known about HPV+ SCC but what we do think is that it responds better to the traditional treatment (Radiation and chemo) and therefore has a smaller chance of recurrence than HPV- SCC. Some are trying to determine if a HPV+ patient can be given less radiation or less or no chemo and still achieve the goal which is to KILL the cancer. Unfortunately the standard treatment today for HPV+ patients is the same as HPV- patients. The obvious fear is if you under treat and cancer cells remain, they will continue to grow unabated requiring additional treatment down the road.

So here your husband is with an Occult Primary which MAY OR MAY NOT be eliminated and a infected node which was removed and possibly nodes which are still infected. Clearly if I were his RO I would err on the side of caution and recommend radiation at a minimum. I would also yield to the MO on the chemo decision. But if he decised to stop the ONLY treatment that can kill the cancer cells that still may be present he may well be signing his own death certificate and very painful one at that. This treatment usually only is bad for appx 7 weeks, SEVEN WEEKS is a mere bump in our life's path. Please do not him throw his life away over 7 weeks.

Oh, Stacey, don't let him refuse radiation. It's rough, but besides surgery it's the only thing that will "cure" him. They did chemo for me primarily as a back-up. The fact that he is positive for HPV is actually in his favor, from what I have read. Hang in there, and get as much information as you can.

Hi there... ditto what everyone else said. Just because they removed it surgically... even if there is no show on a scan, does not mean there is no cancer present. Cancer is cellular. There may be only a few cancer cells present and it will not show up on a scan but it could very well grow into a tumor and spread and then you are faced with a recurrence. best to have treatment full on to make sure he is clean. take care and welcome. and kids are like that. It scares them to face the possibility. I would give my kids regular updates. and never say... this will never come back. I say hopefully it won't so they are aware that there are no guarantees with this disease. hugs.

Thanks David for the concern about the primary, and reason I asked where the involved lymph was. Stacy, there is other info from the node like it being poorly, or moderately differentiated, non keratizing,etc, and noted it was SCC, which most H&N cancers are, and helpful for treatment. I didn't see it was HPV related until David mentioned it, but saw on subsequent threads it was. David is right that HPV positive has a ponderence to be Tonsil or BOT primary. Usually the first nodal path for orolpharyngeal cancer for neck metatses is in level II, and in oral cancer level I, but there can be skip Metasteses. This effects where high doses of radiation should be directed, and assume that was decided being he is in treatment already. Too bad they didn't find the primary, and didn't see if other work up tests were done to find the primary like a MRI, CT, PET, chest imaging, and if the node was in certain levels, a largynoscope with a direct biopsy for concerned areas, and possible tonsillectomy. Was a neck dissection done or was just the one involved node, removed, If there were two or more lymph involment there should be chemo along with radiation, and then if the is still nodal activity, a neck dissection will probably follow, if not already done, but think they went for radiation first, instead of a neck dissection first.

Like mentioned, HPV positive or not, this still is a deadly disease. HPV positive shows it responds better to treatment, has better outcome, both maybe up to 20 percent, but that doesn't add up to a 100 percent cure rate when the 5 year overall survival rate for late stage H&N cancer, which your has is less than 50 percent. It's more like 38 percent for oropharyngeal, and a little higher for oral cancer in the 40 range, and goes even further down based on other factors based on number of nodal involvement, distant metastases The sign of lymph node Metastases is a a strong indicator of prognosis, usually poor. The first shot at this is the best shot, when over 40 percent have a recurrence before the 2nd year. I'm in my 5th. The advise here from Christine, David, Cheryl, and others said are on target to get your husband motivated to kill this cancer once and for all.

Good luck, and take care.

Stacy, if you look at the NCCN Guidelines available on this site (see link below) and look up the Occult Primary pages, you will see that radiation or chemo/radiation to the most likely primary site is recommended.

http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Printing these guidelines had discussing them make a good starting point for discussion.

Best wishes,
Maria

PaulB,

My husband developed Mucositis over the weekend and diagnosed Monday. He had to cancel RT today because he was too sick. I called the RO and they had me bring him in immediately. I asked the RO leading questions based on the questions that I hear from you and the fellow posters. He explained to my husband that the lymph nodes under the chin could be cancerous and that doctors are not perfect and they can't possibly see every cancerous cell so RT is the only answer.

I would describe the neck level as the lower half of the left side.

Thanks

Christine,

I am trying to help my husband and kids learn the facts slowly. I do it many times by asking the Dr questions in front of my husband (that I already know the answer to because of this forum). I have to take it one step at a time. I thought my husband was going to give up today. I had to call his family and ask them to talk to him. He couldn't talk but he agreed to continue RT and 5 IV treatments.

I appreciate all of the support.

Hi Charm2017,

I asked the Dr today if they had tested his 'TCH', explained I didn't know what that was and they thought I was talking about marijuana. We quickly corrected that and the RO felt it was not important to know that result. He said 18 months after finishing treatment that it should be tested and then he could go on Synthroid. They even did a blood test and didn't even test that after I mentioned it. I may take him to for a second opinion but the obvious problem is he is so sick already.

Thank you for your post.

David and Paul,

I appreciate this information so much. I can tell you tomorrow how the tumorous area were described. They did every test mentioned except for chest x-ray. I have him committed to going to the next 5 RT sessions...I am driving. His MO told him that he would be completely cured since it was from a HPV+ virus with no primary tumor.

I will do whatever it takes to make him stick with the RT.

Thanks to everyone that responded.

I love your way of educating your husband! What a great idea!!! You are one smart cookie

If you call the American Cancer Society you may get some help with the driving. I volunteer and drive cancer patients to their treatments. Its a very nice service. It can give you a break even if its just one day every other week, it will free you up for something else. You can even ride along if you want, one passenger is allowed no questions asked.

Stacey,

Baby steps are important but he really MUST complete the entire treatment or it may all be for nothing and have to be repeated again. At least one study indicates that HPV does increase his survival chances but that is assuming he gets the same treatment as if he were not HPV+ meaning at least appx 35 radiation sessions with appx 70-72 gys and possibly chemo. Unfortunately HPV does not guarantee that he will survive as we have seen many HPV+ patients over the years succumb to this horrible cancer dispite being treated. He must understand that he and you are in for the fight for his LIFE. This is not a bad case of the flu. This cancer kills someone every hour of every day and will surely, without a doubt in my mind, kill him in a very cruel way if he does not eliminate the cancer from his body.

There may shortly come a time when you must expose your fangs and become the Caregiver from Hell. My wife and many others have had to do that during this treatment so don't feel alone.

Re the TSH levels...first off, radiation can permanently damage his thyroid. If that happens, like it did to me it is determined by measuring his post Tx TSH levels to see if they fall outside the "normal" range. Unfortunately this "normal" range is very wide and most docs are satisfied if they prescribe a pill (synthyroid) that returns your TSH to within this very wide "normal" range but we have found out that we all seem to have our own unique "normal" TSH level and only by returning us to OUR normal will we be, well normal. That's why we always advise getting your TSH tested pre Tx so that normal number can be archived just in case. Charm knows more about this than I so maybe he will explain it better.

We will be there for the both of you for as long as you want.

Is your husband feeling sick because he is dehydrated? Mine did and actually passed out while we were with the RO for the weekly review meeting. He was put on an IV immediately for hydration -- they gave him 2000 ml that day. Then we returned for three more days for hydration. That was a lesson learned the hard way. I totally see why Christine stresses the importance of hydration with each new member of the forum. Has your husband got a PEG tube, can he get one? That will help a lot with the hydration and getting enough calories in every day.

Stacey

I sad that your concern was dismissed. It's just my opinion, but based on what my endocrinologist (a doctor who specializes in hormones including Thyroid issues) says, and my own personal experience, that doctor is wrong in thinking that it is not important to know your husbands TSH level now. It's a common error, they even made it at my CCC, where I had a major argument with my doctors until they admitted that they did not keep up on the changes in the acceptable TSH lab work range, nor had they read that every professional society of endocrinologists felt that the lab ranges were too broad, nor did they have any defensible medical citations that said an individual should not have the same TSH level after radiation. I asked for specific citations and sources they relied upon and of course, there are none to support their position except a vague recollection of medical school and their current practice.
You are within your rights to demand, not ask about that they check two little boxes on the blood test form.
They do not have to agree with you, they do not have to do anything but get that baseline number for you now.
Because 18 months from now, that doctor will just look at the blood tests and say" It's withing normal range" without knowing what's normal for your husband. (By the way, the NCI guidelines on page MS-10 that Maria posted for you say that the thyroid test should be done 6 months and 12 months after the radiation, guess your doctor misread them and added them)
Since most people do not have experience in cross examining a doctor until they blush and admit error, your best bet is to sak politely to have the TSH test done and the actual number given to you. It can not hurt. You can say you'll feel better if you know that number. The other alternative is to contact the Patient Advocate at the hospital where you husband is being treated and just repeat your request to have one simple blood test done now, making it clear that you do not want or need the doctor to change anything or do anything different except gather an important piece of information on your husband.
It is arrogant and rude in my opinion to do another blood test on your husband and ignore your TSH request. Seriously, call the patient advocate
Charm,

Hi, Stacey
I know the TSH test doesn't seem important now but it you can get them to do it will help do the road. My husband's ENT keep virtuously including the test, and the TSH kept going up, but the (older) endocrinologist was just a pill about it. He followed up with a younger PCP and how is on a proper thyroid medication.

I am glad you are doing the driving to radiation therapy! My thoughts are with you.
Maria