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:

The technicians can tell if his mask is too loose when aligning him up before radiation and setting up the beams. The RO will start to be concerned if to much weight is lost, 5lbs, when being weighed each week, and may suggest another simulation, new mask if further weight is lost, but it's a good question to ask. It also depends on how much weight is lost in the face. I lost 40lbs during one radiation treatment, and used the same mask, so everyone is different.

As far as the tumor not needing radiation anymore due to the tonsil being clinically responsive, it does. There entire tumor may not be killed off, microscopic cancer can be there, and tumor does regenerate, after each radiation, so he needs to complete the entire treatment to kill the cancer completely.

I stayed at American Cancer Society's Hope Lodge if that's the one you are referring to. It's an amazing place, full service, upscale, and better than some hotels costing $350 at night, minimum here, I was at their flagship lodge in NYC, although I live here, it would take me up to 2 hrs each way to commute, sometimes longer, just for 14 mies lol, so my RO set me up at Hope Lodge, so I could do my treatments at the hospital. I met a lot of people, some around the world.

I never take notes during the meeting, it takes away from the conversation flow. If anything, I would write questions to ask beforehand, and when I leave the office jot down key parts of our conversation. I usually get or already have copies of all my scans, surgical reports, pathologies, blood work, and later on the doctor's office reports, so that is helpful to understand what thier talking about, clarify anything. I would never record the conversation either, even if the doctor said yes. You may just get guarded answers then. I go alone to my doctors, but an extra set of ears may help, who can take notes, but they shouldn't get too involved (mouthy lol), and mix up the conversation, that's my opinion, but do whatever works for both of you.

All the best.

What type of chemo? I assume Cisplatin? I was a tad sick after #1 but for me #2 was much much much worse. Number 3, forget about it....Nothing helped my nausea and pleanty of things related to this Tx can help make the nausea worse like pain meds and constipation so do try and stay on top of his nausea, it's a game changer. Remember that we all can react differently to everything so even if something worked or didn't for others doesn't mean it will or will not work for him.

Thanks again for helping and most if all for listening it really helps getting trough something you've never heard of:
My husband is taking cisplatin: he started 5/20 and started Rads: on 5/19
This morning he didn't fill to good he had some vomiting nothing major and he's felt nausa up until the after noon and ate some latter he had a big shake!! Would the chemo still be working after 8days? He felt sick the day he took cisplatin: also what could he be using before going in for Rads? Like a cream to delay the burning sensation .. He seems so down I'm just so use to seeing him smile and laugh and seeing him working in his garage this C news has really came hard spring and summer is his favorite times of the year (mine too
He an out doors man to the fullest!! But the boys and I won't let him get too board but I will see that my baby gets rest I just don't want him getting too much I just want to try and keep things normal:
My husband ask the nurse assisting today in rads about a spray for the mouth after he finished everyday doing the radiation she said they didn't have anything like that so we will just continue toating our baking soda,salt,water around I would really prefer a saline wash of some kind.. Also about the note pad I keep to jot down things that's just something I do before and after we visit with the ENT or the RO or just a reminder of how the day is going appointments etc... For the recorder yes if we're going in for important news I have been using my phone just to record a few minutes of info: I don't ask them to speak into the mic! But I just keep it in my lap or purse while my husband me and the DR chat it really does help to go back and say ok I know what that means now or that's how you pronounce that word .. Just things like that and it works for me so that's what I'll do !! It's been a long day over an hour and forty five minutes one way and the lodge is located in Ky.ive heard good things about it only thing is children aren't allowed so we will make the drive lords will !!
Thanks again very blessed I found this site starting too learn how to use it!!

He very lucky to have you but take care of yourself. There are current and former caregivers on this site so talk to them about you.

Remember ANY advice we give you here should be discussed with your docs as we are not doctors but patients and what works for one may not work for another.

Re the cream for radiation, your docs will advise AGAINST putting anything on before rads but many here have used Aquaphor after each rad session. It helped me but I didn't start to get "red" outside until the last week of rads.

Ask about what most call Magic Mouthwash. The ingrediants change from pharmacy to pharmacy but some find it helps sooth the throat making swallowing easier.

You're doing great so keep on posting.

Thanks David!! I'm very happy to hear that cause some here don't have a care giver But still make it even tho it's a little harder doing it alone
Today is day 8 on the rads gezzz!! We still got a ways to go: thanks again also David on the cream i did some research and found a cream that looks to be very promising on helping with the burn that comes along with rads: it's called Silvadene some May have heard of this but for me it was the first time finding the cream after searching many places online we may try this or the Aquaphor cream if needed


He felt good this morning not sick he ate a half order of biscuit & gravy he's also still doing good on the water intake but soon as we get to Rads he says I fill a little sick so leads me to think it's nerves I found that giving him Prilosec seems to help more with nausa than the nausa meds given at the first chemo Tx hope everyone is doing good summer is here and we have waited patiently for it but looks as tho we're going to be stuck inside where a little longer (very sad face ): but The Lord will continue to see us trough this I pray we will miss the flea markets and garage sales we really enjoy this every year we get into the primitive and antiques ...

As far as me taking care of my self it is hard at times as we have two boys in school but I'm doing good thank god : again and again thanks for the replys here this is a wonderful site as it gives info sometimes a Dr just seems to busy to give or wants to give I might add):

I think we all had to get through the "doctors are busy and give only short answers (or no answers) to my questions" issue during treatment.

Every time my doctor gave me an inadequate answer I told him I needed more detail in his answer. He would then take longer and explain it better. Eventually he gave me the "good" answer to every question.

He also added that most patients don't want to know what's going on with their treatment or their disease. Many of them are in denial and psychologically overwhelmed by it all; they just want to come in, get zapped and leave. Since that is the norm doctors give short answers or minimize their answer. BUT, once they realize you ARE serious about wanting to know they will open up and give you the detail you seek. My doc said he did this because patients who want to know make better patients and have better outcomes.

So, fight for yourself and your husband. It's all part of being a good patient advocate.

Tony

Thanks tony I will make sure I'm more than will to be told things that we really want and need to know this is a persons life I fill some Doctors have more patients than they can handle meaning they have too sit and read their chart to know what's going on it's really not fair to the patient I did ask about the nodes when we we're told they was 12mm ,16mm ? Is this big or small nodes I thought small cause they say the tumor was hiding the two nodes on the right side of the neck where the Tumor is at....

This was on a screen cause when he pulled the tumor up to show us I ask where is the nodes and that's when. He said they can be seen cause of the tumor ? How did they see them in the first place we was told a t3 then a 4a but I thought a 4 would be considering he couldn't open the mouth but he opens his mouth good eats and drinks water great I thought also surgery would have happened first but the said radiation and chemo


The chemo made him sick for 8 days what will they do when I tell them he can't take it will they lower the dose? So many Questions so little answers from the docs (when we get to see them thanks again everyone.....

Tomorrow starts a new week Larry hasn't felt good today I sure miss him working in his garage!! Where he would handle his antique tools keep all his knifes sharpened .. I use to get so mad cause he stayed in the garage all his free time I call his garage cause it's where all his toys are at his tools ; now I just wish he felt like going out their I would be happy he took two cans of his formula today by mouth and are some biscuit & gravey he's been drinking water really good I guess we will see what this new week brings I pray it's good and the rads won't be to hard on him ..
We get to talk with the RO tomorrow I'm going to ask if it's an option after the treatments are done would it be a benefit if he get surgery to remove the tonsil if needed I also want to ask when he will get another CT to see how the tumor looks in his neck and how the nodes have responded to the radiation I'm sure how often this is done our kids will be out if school on the. 6th I hope their dad is up to doing some activities with them I know he needs rest but he seems a little depressed and I can understand that it's just so hard to go from healthy to being sick : keep my husband in you're prayers say a little prayer for me to ..

You must be patient, unfortuately you both have a long way to go before things get better.

My personal opinion is to avoid unncessary so don't push your doctors into something they don't see a need for. If surgery is needed I'm sure they will advise you so.

I guess David I just have so many of the What If ) going on it's nice to just forget about for a little bit and relax we are learning to take it one day at a time sometimes one hour at a time when we are at that moment to hurry up and wait ) that' would be reassuring to know that if the surgery is needed and will help that it can be done but you have to get the questions out fast!! Their is just so many pactients that need care and I'm sure they all have questions .. The nurses are very kind and full of answeres.. I'm glad he felt good today the Radiation therapist give him good advise today and I think that helped boost him up to stay motivated to doing things as he did before he was diagnosed and that's what I keep telling him stay as normal as can be trough this it's better on the Health the mind , body and out come when treatments are finished!! Thanks David for the reply hope all is well .. Have a great week! (Learning patients )

This is one reason why it is so important to write down your questions and have the medical team address them. You have a captive audience for a brief snapshot of time. Use it wisely but get your questions and concerns addressed before your appointment is up. Even if they are busy, it's better to get answers and direction.

Like David says, you have a long way to go on this journey. Hang in there.

Yes you both do have a long way to go but we will be there every second of every day and that's a promise.

Thank you all for the comforting words they truly mean a lot this is my escape to get on here and learn and listen to much needed Advise and knowledge from those who have been their! Done that! I really look forward to getting on here and reading the post and I must say I've learned so much I never knew before!! Thanks again friends

We're starting week 4 I think !! I had a question bought rads will the radiation affect the atnoids think that's the spelling my husband seems to sound as tho he's talking trough his nose ,, the chemo dr said only one more chemo and a half dose at that because he affected him for none days : he was sick the day he finished the first dose of chemo" he was told first time he saw chemo dr that he was to complete 3 treatments of chemo so I'm hoping this don't alter his ability to heal I've always though rads we're the most important .... "

He is getting the inside of his throat damanged by the radiation so it can easily affect his speech. Most of us lose our voice for a while. Mine lasted a few days and believe me my wife loved that period! She did give me a bell which she quickly hated that as well and to this day I haven't seen that bell since I regained my voice.

Your correct, radiation, besides surgery, is the real cure for this cancer, but chemo acts as a radiosensitizer to make radiation work better. Depending on type of chemo that petcentage can range. Sounds like Cisplatin with 3 doses, which is the gold standard, plus chemo works systemically, and may get at any microscopic cancer, if any, outside the radiated field. Many do not go on to complete the 3rd infusion, even 2nd, due to side effects or may even do radiation alone, but the chemo may still be in the body to act as a radiosensitizer for a while.

Good luck.

Thanks David that was funny I'll remember that no Bell)haha
And Paul I do think he may do a second dose of the chemo" but only a half dies is what the chemo DR advised the first really took a toll on him he starting to get the mucous in his throat I was thinking it was from the thick formula he's on the two cal " and I think that's the name of it it has like 475 more or less calories hoping we can fine a alrernative cure for this in the mean time



Thanks as always for the good advise and funny comments!

Try Boost VHC which has 560 cals in the same 8 oz can. I drank it room temp. Just opened a can and drank a can in a few seconds. He needs appx 2500 to 3000 cals EACH and EVERY DAY. He also needs at least 48 oz of water EACH and EVERY DAY. You must get the VHC either on line, like Amazon and be sure to use the OCF link or thru the phar dept at a store like Walgreens, CVS, etc and DON'T use that PEG unless ABSOLUTELY NECESSARY.

I'm going online to find that David and yes we're trying to stay away from the peg that's so true I've said since day one not to use the peg unless Absolutely needed all we do as of now is clean it everyday and keep it flushed ,, good this came up cause the nutritionist talk with us in May and she kept trying to push my Husbabd into using this and I had to jump in and say WHY? He's doing good with out we only got for the Just in case situation )and don't get me wrong here we will use when and if he needs it !! I thanked her for the concern if their was one : I told her not to dis courage my Husband, from eating cause all the chemo and rad: drs told us not to use the Peg ,,, unless needed .. And I think that's the very best decision!!

It is surprising that the nutritionst would encourage the PEG knowing that he was still able to swallow.

I suggest using the tube for supplementing your husbands water intake. Flush it a couple times per day with water. If he is able to eat and take in 2500+ calories per day encourage him to continue to do so. It isnt necessary to depend on a feeding tube if someone is able to eat and drink. That will promote dependance when it is unnecessary. No reason for that! Good for you for standing up and being a great advocate for your husband!

Best wishes!

NO surprising. Mine pushed me to. She kept saying try it make sure the formula is okay (it may take a few tries to get one you can tolerate) I guess she didn't want me to get to the point where I NEEDED one and couldn't find a formula I could have. Both times I used it I vomited violently, so I stopped. And suffered by mouth. Which was a good thing. I had the peg out two weeks after rads finished.

take care.

That's true I think she wanted my husband to see if he would be able to tolerate the formula in case he came to that point where he would need the peg for calories but really she should have said it that way it was like she wanted him to take formula more than doing the intake on his own I got really frustrated on that subject .. He into week four so I'm hoping for him that he will continue to swallow by mouth if he needs the peg then it's their and yes I have been putting water trough the peg , keeping it flushed everyday since he had but one day and that's when he first got it we left the hospital with out talking to the the dr that placed the peg cause we had been their so long from a delay they had and the dr was still in the operating room .. The nurse said it may be awhile before he will discuss the care for the peg they we're so busy she didn't have time to tell us but seem very nice so I came home and got my info from here very thankful for this site and all the caring people on here that takes their time out to reply to the post!!!

My mom is mid week 5 without a peg. She's gained a pound since the start of radiation. She's worked hard at getting her calories and water down. The radiation nurse was ready to give her a medal. However, the interim RO (regular doc is on vacation this wee) said, "I don't understand why you don't have a peg, you won't be able to finish this treatment without a peg. Let me call for a consult on the peg."

We declined. There was a reason the RO and MO decided not to place the peg unless she started to go into a weight free-fall. One pound gained in 5 weeks of radiation is not a weight free-fall.

Re the PEG.....there is a NON SURGICAL option to the PEG and that is the nasal tube. It takes a minute to slide the tube up thru your nose and into your stomach. It's rigid at first because it has a thin metal stip in the tube. Once in place they take an X Ray to make sure it's where they want it to be and then they slide the metal strip out. It's meant for short term uses which is exactly what we need. I refused the PEG but 1 week post Tx I was in serious trouble. I couldn't swallow without sever pain and then I would gag and toss those cookies. I was going down hill fast but they talked me into the nasal tube and wow I used it for 2 weeks and was allowed by my doc to pull it out at home myself. It made a HUGE difference in my recovery. No pain, no discomfort ever. Even took showers with it. I can't understand why this isn't pushed way ahead of that PEG???

BWB your mom is doing great by the sounds of it. I lost weight.. about 12 lbs. Then after treatment I lost 21 - (I had it to lose) mostly because I revamped the way I ate cutting out all crap and processed foods. I have gained back about 5 lbs as I was told I was too thin by a casting agent (VERY UNUSUAL) Initially all food tasted crappy but now natural foods taste fine and I am still not the sweet-aholic I used to be (my sweet taste is VERY DULL) which is a blessing for my teeth, weight, and health.