Hello I'm Angielina my husband is Larry we been married 20 years this past march!

The end of March my husband was hurting bad in his jaw area where he had been hurting for the past weeks off and on he was taking Motrin for the pain and it was healing the pain for awhile he went to the ER and was told he needed to go to lexington to see a DR, and the ER,dr wanted him to go the next day see my husband is the kinda guy you just like to talk to and be around he always knows whys to say and how to make a good conversation!! So the ER dr really seem to care about Larry so he wanted him to be seen soon the next day!! That was for him to be seen in a whole new town in Lexington ,ky abought an 1:45 mins away so fr their I call and get a new appointment it was two days latter from seeing the ER dr he also give Larry the film that was on cd to take with him to see the ENT we get their and they look down his throat with a long device with a light and camera on it this went trough the nose it was so quite in the room we were very scared I felt sick and I'm sure Larry did as well ,, so after the checkup he said it looks like their is a tumor their and we're going to set you up with an appointment for a biopsy so after the ENT did the biopsy I met with him In a consultation room where he said I seen the tumor you're husband has I could do surgery to remove it but I think he will do better with radiation and maybe a few chemo"" treatments so I ask is this curable he said yes but he will need those things done he said but first we will set you all up to come back after we get the biopsy results in so I went on asking more questions and he acted like he got in a hurry after that a week latter or less we go back and he met with us saying yes it is cancer Tonsil Cancer I had never heard of it and it's HPV. 16 positive still never heard of it !! We set their silent cause we had been so scared from day one I couldn't eat it's been like a dream I've came now to kinda have more knowledge about it still needing more of course ..,

The ENT set us up with the rad DR , and he wasn't what we was expecting he was made us fill down headed and pissed me off I was kinda rude back with him!! He seem like a sour puss .. But on a better note we met a guy who worked under the rad dr he was very nice we felt a little more comfortable with him after we go back for the pet scan a week latter we see the chemo dr and she is very nice up front answering all the questions I had cause my husband very rarely ask and questions he seemed very comfortable with her as she wanted to sit and keep talking to him she just kicked back and really enjoyed the conversation she also told Larry about his pet scan that everything looked good except the tumor was their and two small lymph nodes on the right where the tumor was and one small node on the left I think they we're 16mm and 12mm the chemo dr said you don't have to take the chemo unless you're very comfortable and 100% sure in you're heart you want to do this Larry did ask one important question how much does this add along with radiation she said 10% really that's all I thought maybe he shouldn't put himself trough the chemo I was set against it from their own I think she was trying to tell him not to do it but didn't want to come out and say it that the impression I got !! So we say set him and we will think on it if he decided this isn't for him I will call and cancel!!!

Larry decided to go with it after his sister told him it might get some bad cells so he says yes I try it the nurse we saw when we get to chemo was very nice he told us lots of stuff about the cissplation the name of the chemo Larry would take he set their for 6 hours he was relaxed he ate chili and cornbread he did drink lots of water and some sprite after we get on the road heading home Larry don't fill good at home he goes straight to bed he fills sick he laid in bed bought all day that evening I get him up he drinks a chocolate milk shake and sits on the porch still not wanting any food he says the chili made him sick I say the chemo so the next day he still don't want good he says he still fills sick he threw up several times I flush the peg tube and have him empty some of the chili out that was still in the peg so really he starts to fill better after flushing the peg Larry is still able to swallow and eat good and I pray this stays the same.

I pray for all who go trough this now we have on our minds that he will always have dry mouth cause we haven't got to see the rad dr to ask for oral meds to save the saliva glands if their is such a thing..., I heard of a wire used to tie off the saliva gland but I guess it's in a bigger city hospital I've read up on the tonsil cancer and I've wrote dine and put together lots of important info : and I will share those things in some of the post here so everyone gets to view it this is Larry's 4th day rads ..

Yes he's just started, hoping it's over before we know it Larry and I have two boys ages 7 and 14 he's such a good daddy the little one still sleeps with his dad and the bigger one did the same thing from like one year old so that shows their love for him the little one won't sleep in the bed unless his daddy is their and the last few weeks Larry has made the recliner his bed so last night I set their bed up with pillows and made it almost as if he was in the recliner I heard him up this morning I think he had the runs still not sure if it was from chemo or chili !!

I keep the peg clean keep him drinking water and eating but this man has been a worker all his life he worked as a foreman in the coal mines then he started construction and he's did that for twenty Some years ,, he'was always in the garage working on knifes and his tools and Antiques witch he had lots of all those things he loves hunting fishing flea markets antiques guns knifes all that stuff so he's going to miss that until he fills better and we're not sure how long that will be like I said he only been 4 times to rads 1 time to chemo!!!

I really wish Larry could have did surgery I would have felt more comfortable then he could have did the chemo radiation but we will see how it goes thanks for reading and letting me vent some too !! Hope to learn more from this site and met new people with more info thanks again

Angielina,

Sorry you and Larry have had to join our club here but with the HPV+ diagnosis he stands a good chance of beating this cancer and leading a totally normal life thereafter. That said, I need to warn you that this treatment he is undergoing will get worse usually with weeks 4 thru the 3rd week after treatment being the most difficult for just about everyone so just be prepared.

I see you mentioned the PEG. Please only use that when absolutely necessary. Make him use his swallowing muscles every day. They can "forget" quickly what it is their supposed to do unless they are used frequently. A lot of us didn't have a PEG and we still managed to get thru the treatment.

You are lucky that you found this site as there are tons of us that have been there done it so use us and don't be afraid to ask us ANYTHING. This treatment will most likely affect everyone in your household, especially you and there are pleanty of current and former Caregivers to lend you their experiences.

There will be many different phases that he will go thru during and after this treatment including loosing his taste which is early on so as something happens or changes please let us know and we'll tell you what worked best for us.

BTW we are open 24/7 and appts are not necessary. lol

Hi Angielina, welcome here!

You might want to print this out for Larry.

Your husband Larry is a lucky man to have a wife like you as a caregiver; you care, and you pay attention to what the medicos tell you.

Larry was right to chose to take the Cisplatin along with the radiation. The Cisplatin prevents the cancer cells from dividing and it also sensitizes the cancer cells, making it easier for the radiation to kill them.

Here's the deal with cancer, the first time you attack it, you want to hit it with the most powerful weapons you can get your hands on, and the combination of Cisplatin and Radiation are that! Please don't let him quit taking the Cisplatin now, no matter how sick it makes him (and it is what is making him sick now, pretty soon the radiation will add to his misery) because you do not want a single one of those evil cancer cells to survive and cause you to have to repeat the treatments.

Here's a bit of good news, your Larry, having worked with his body all his adult life, has entered this fight for his life in great physical condition! This is one of the best things a person can have going for them in a fight like this (or any real fight, for that matter.)

Another bit of good news is that is is HPV related, I'm another, and having been on this board for more than a year and having seen what others report going through; I can see that having HPV is a relative blessing. We generally have easier side effects to deal with than those who do not have the HPV connection.

Not so good news is that Larry will lose his sense of taste very soon if it hasn't already gone bye-bye. The good news there is that it will return and is only temporary.

Here's something for you to pass on to Larry: Pay close attention to any sign of tinnitus, which is often referred to as "ringing in the ears." This is a sign that he IS losing some of his hearing, and this needs to be reported to his Medical Oncologist (the guy in charge of his chemo) who will make adjustments to preserve what's left of his hearing. I've lost 50 to 60 percent of mine.

The other thing to watch equally closely for is any change in the feelings he has in his toes or finger tips. It may be a "tingling" or it may be a numbness, but any change in his normal feeling in fingers, toes or feet should also be immediately reported to the MO. I've had some minor loss in my fingertips (I can't hold a single sheet of paper for long before it slips away because I can't feel it slipping). That's not as serious at my level of loss, compared to my hearing loss, but it could become serious if left unchecked.

Please keep us informed as you progress through this, we all care!

Best of luck to you both,

Bart

Welcome and thanks for all the details. You are on top of the situation so just be aware as already stated, things will get worse before getting better.

There are so many things going around it is hard to know what is important. I tell everyone the same thing.

NUTRITION - HYDRATION - PAIN MANAGEMENT

It is most critical to take in as many calories as he can. He needs to drink as much fluid as he can. He needs to be comfortable and pain free.

Easy to say and hard to do but these are the important tasks to take care of all the time.

Good luck
Don

Welcome to OCF! Im glad you have found our site to help both you and your husband get thru the next few rough weeks. Its a long difficult journey but it is doable.

As a caregiver, make sure to always try to take some time for yourself. You have a whole family to look after so you have to be in good shape. Being a caregiver can be hard, it can feel like the weight of the world in on your shoulders. As things get progressively harder, you will see how taking a few minutes just for you can be helpful.

I cant stress enough how important your husbands intake is!!! Every single day he needs to take in at least 2500 calories and 48+++ oz of water. Im glad you mentioned he is able to eat and drink. That is something he MUST do daily, several times per day to make those swallowing muscles keep working. Food will lose its appeal and taste like cardboard but he still needs to force it down. Milkshakes are a great source of calories and much needed fat. If your husband isnt taking in enough water, he could have kidney issues... please make certain on chemo days and the next day he drinks extra water, like at least 64 oz.

As far as his hearing goes, watch it closely. Any changes even a ringing in his ears could turn into a big issue and the doc must be told. Cisplatin is known to cause permanent hearing loss. Make sure you talk to your husband about his hearing and tell him to speak up if he feels any change at all.

Stick with us and we will help you both get thru this. Best wishes with everything!!!


PS... Please try to make some paragraphs when posting. It makes it much easier for us to read and help you.

Thank you all for the kind and encouraging words!!
Like I said and as you can tell I'm new at this and I will change my signature I'm very thankful for this site!!! and more thankful for all you're knowledge on here!!
I look forward to learning each one here and reading all the info: again thanks for taking time to read trough my messy Typos!! Practice makes perfect so I'll change some things and better describe what's going on with my husband and learn some of the abbreviations!! Thanks again

Hi Galley: Once again, welcome to the family. You have lots of friends here who will help both you and your husband get through this battle. It won't be easy, but it is entirely doable.

Several time now proper nutrition has been mentioned to you. It may be very well the most important factor in getting you through this. Cancer is hyper-metabolic, that means it eats a LOT of calories (after all it's generally trying to grow rapidly). Sadly, the treatment is also hyper-metabolic; what the disease isn't eating the treatment is. So, what does that mean for poor Larry who is 3rd in line to get some calories, it means Larry has to eat a LOT of calories. We've all heard the pregnant woman is eating for two, well Larry is eating for three.

Now, let's factor in loss of taste, or even worse everything tastes BAD like it did for me. When things taste bad we spit them out, but what if everything tastes bad. Go down that road just a little and you will see how patients can decide not to eat anything as nothing tastes good. Do that for a couple of days and you can start losing 1 or 2 pounds of weight every day. keep that up for awhile and you end up in the hospital due to mal-nourishment, on IV feeding, but worst of all is your treatment stops while you are in the hospital. Stopping treatment is a bad thing; once we get the cancer to start dying we need to keep it dying and not give it a chance to recover.

My doc told me 7 bottles of Ensure every day. I generally got 6 of them down and surprisingly they didn't taste bad, one of the few things that didn't taste bad. But I still lost 32 pounds in 6 weeks. One more pound of weight loss and the nurses were recommending I go on a PEG tube. Fortunately for me I was a plump little dumpling before treatment, so I had extra weight to lose. If Larry is slim and trim already he really needs to eat, he doesn't have the extra to lose.

Lots of people tell you to eat during treatment, but they always give you the short version. My crusade is telling people why they need to eat (a lot) and what happens if you don't. And as Paul Harvey always said; "now you know the rest of the story."

Welcome to our family, we will help you get through this.

Tony

Larry came to the second week of rads,, he was off yesterday for Memorial Day !! He's set for second chemo on June 5th we're wondering if we can ask if the chemo dossage can be less than what he had the first time ..
The first time really made him sick he was very nausea at his stomach also do they have a med out their that helps save the saliva glands? I've heard they do have but not sure on this!
My husband is still able to eat he is now saying the food taste bad as we' we're told this in the begining ....
He also has the peg but hasn't had to use it yet
I pray he don't !!! Thanks for all the information from everyone

You may be talking about Amifostine, a radio protectant that may help with mucocitis, dry mouth, also protects the kidneys from chemo, but read mixed reviews as far as the benefit vs the toxicities. It's given 30 minutes before radiation either by injection or IV, but read IV is more tolerable. I've seen more of it more a few years ago, but not as much lately, so it may not be used as much.

http://jco.ascopubs.org/content/18/19/3339.long

Pilocarpine is a pharmaceutical salivary stimulant, along with a few others, in addition, there are natural and OTC products to increase saliva.

As far as the Peg, if it's needed, use it. That's what it's there for. There are no medals given or any added bonus points to be received for tuffing without it, and being malnourished or dehydrated unnecessarily. Basically, he should be consuming at least 1/2 his body weight in liquids, 20% can be from food. There are water apps, calculators out there to configure based on height, weight, gender, activity, and mine comes to 128 ounces, and the peg sure comes in handy to do that, and will help flush the kidneys, especially with Cisplatin.

Good luck

Thanks Paul yes we will use the peg if needed I'still have faith that he will be able to eat trough the treatments and after...
If he gets to the point of the throat being to sore or from the mouth being sore we will use the peg for sure that's why he chose to get it placed just in case .... Today went good at rads Larry got to speak with the RO and he looked at the tonsil and said it was responding to the rads and he was very happy with what he saw we were glad to hear those words!!! We also mentioned is their any meds out their to help prevent total salvia loss.... And he answered yes but it's nothing that would help because the radiation is too close to the salvia glands so it would not change things .. One question I didn't ask was when my husband would receive another ct or X-ray that could tell if his mask that was made before rads needed adjusted for the rads to be right on target cause if the tumor is shrinking and responding to the rads shouldn't the spot not needing rads need to be relived .. It's a lot to remember.. Up till today I was bringing my note pad journal to write things I had ?'s about in .. Forgot that today too just a little foggy))
Today I also talked with a lady She and her Husbabd are staying at a lodge provided to patients and their families!! She told me lots about it I told her that sounds like a nice place but I also had already read up on this lodge it saves families the long road trip and saves on gas need not reminded how much it is... (you're provided with a room that's very nice the lady said with very nice attendants their only thing no one under 18 so our children could not stay and we're trying to keep it as normal as possible for them ,, (and make the hour and half drive
From the chemo " he still is nauseated hope this will end soon: