Hi, my husband was just diagnosed last week with Tongue cancer. His lymph node came up in late October and after a course of antibiotics, he was referred to an ENT who started looking for cancer. Several biopsies later, he was finially diagnosed last week with a "low-grade" base of tongue cancer (left side) and a secondary in the left lymph node. He tested negative on the right side of tongue. From my own research, I understand the metastatis to lymph node defines it as at least Stage 3.

We are currently waiting to see an oncologist at a local Cancer Clinic (we are in Canada) to get the cancer officially staged and to determine what the treatment will be.

I do have some questions if anyone can help:
1) Assuming he receives radiation treatment, is a PEG tube going to be inevitable in his case?
2) Will he lose his voice during radiation treatment? If not how impaired will his voice be?
3) He is a realtor and self-employed. He seems to think he will still be able to work a bit during the treatment. Is this in any way realistic or is he in denial?

Hi Marina,

Welcome to OCF. I am reliving the first week we found out about my hubbie's cancer thru you...I know you are reeling from the news and have so many questions.

The decision to have or not have a PEG is a hard one. In our case, since hubby chose twice a day (hyperfractionated) rads, the decision was made for us (it was the only way the doctor would do it.) The surgery to have his PEG placed (as well as a mediport) was done on an outpatient basis before treatment started and Bill was fine after just a couple of days...muscle soreness in his belly was his only complaint. Bill considered it a Godsend...a real lifesaver when his throat was so sore he could not eat. In our case, it allowed me to keep his nutrition and hydration at optimal levels plus administer meds. I believe it made a major difference in his healing ...he was back to almost normal activities and eating at three weeks post treatment. We had a good experience with the PEG...our insurance covered all the supplies and supplements and the PEG site stayed healthy and clean...no problems with infection or pain.

Bill's voice did get raspy, but he was always able to talk. Today, he still has a change in his tone...maybe always will.

Bill was able to work up until about the end of week three. He felt pretty lousy after that and only worked sporatically until two weeks post treatment. I had to start driving him to treatments about that time as well...he just was not up to it.

Hope this helps...you have come to the right place for both technical answers and moral support.

My best to you in the coming days...things will get better once you get a treatment plan in place and get going...these first few days are the hardest as far as your mental state is concerned. The waiting and decision making is the pits.

Hang in there, Deb

Marina,
No doubt about it, you're in the right place for information. This is a wonderfully helpful site that is full of wonderfully helpful people who are sincere and who truly care about what is going on with you and your husband. Godspeed.

Thanks Deb and John. Yes it is still a shock, made worse by having to wait to see an oncologist to ask questions after the intial diagnosis by the ENT/lab.

I want to add that we have a 2 year old and an almost 4 year old and I'm also 16 weeks pregnant (for those trying to do the math, the lump was noticed 2 weeks after conception). The timing on this couldn't really have been any worse.

Marina,

Lets see what treatments are proposed before I comment on the likely side effects both during and post treatment.

As far as the Peg, you will hear both from people that had the Peg and from those of us that didn't. I didn't and I'm glad I didn't and if I had it to do all over again I still wouldn't want the Peg. If he has the "standard" treatment of concurrent chemo and IMRT it won't be easy either way. The most important thing to do is to make sure he gets the recommended daily portions of food and water and keeps swallowing the whole way through.

Let us know more about your husband, i.e. age, smoker vs non smoker, drinker vs non drinker, and definitely tell us what treatment they suggest. Read the tremendous body of information available on this site to better arm you when those difficult decisions need to be made.

I am sorry for your need to be here, but welcome you to an incredible community of people who are here to help.

First of all, as David said, a lot depends upon the specific treatment regimen prescribed. However, his diagnosis sounds a lot like mine. Keep in mind that everyone responds to treatment differently, so for every horror story you hear, there is someone who got through pretty well.

In mmy case, as my signature indicates, I had very aggressive treatment -- bilateral neck dissection, 39 rads and 8 weeks of chemo. I did not have a PEG tube, as our CCC does not use them as standard treatment. They believe that it is better to recovery to keep eating, if at all possible. They do, of course, insert a PEG where necessary.

By Week 4 or 5 of radiation, I was down to extremely soft foods and fluids. However I ate all the way through. I also continued to work all the way through, and drove myself to all treatments. Again, this is not to say this will happen with your husband, but it does happen.

Stay close to the boards as things progress. Ask lots of questions, here and at the treatment center. We are all here to help.

Marina,
Just my 5 cents....
As you already heard a lot depends on what the treatment is going to be, surgery/chemo/rad.

1) Assuming he receives radiation treatment, is a PEG tube going to be inevitable in his case?
I had one and I hated it! But I still recommend getting one. Some RO's absolutely require this. It does make things easier (hydration and nutrition) when you need it. Clearly, if you can eat normally do so as long as possible! On the other hand, if it turns out that you need a PEG, it would be very bad to insert this after a month of radiation when everything in inflamed!! (they go through your mouth)

2) Will he lose his voice during radiation treatment? If not how impaired will his voice be?
Expect changes... and this depends on the the radiation field and as always on the individual. There was a time when I used note pads (and hand signals) to communicate.

3) He is a realtor and self-employed. He seems to think he will still be able to work a bit during the treatment. Is this in any way realistic or is he in denial?
Again there are big variations... but do not count on it. Initially he should be able to do some work if all goes well. Later on he probably would not have the stamina to drive a lot and show houses (Assuming problem 2 is not an issue). Also if he is on Morphine/Oxycodone or other stuff not much work might get done.

M

Thanks everyone. Here is a bit more about him.

My husband is 52 and was a long time smoker (28 years) and fairly heavy drinker (6 pack beer a night) but quit both cold turkey 9 years ago, a few years after we met/married.

He is a healthy person, not overweight and works out at the gym regularly as well as playing golf all Spring/Summer. He is rarely sick and has never been hospitalized.

He does not work in a hazardous environment being a realtor now and an onsite computer technician previously, although has been a very heavy cell phone user for approximately 10 years (on the same side as the cancer - I have read some articles indicating a possible connection).

There seems also to be many articles suggesting a link between HPV and oral cancer. Neither of us have been tested for this, but I plan to ask my own doctor to test me as I'm interested to know if this could be a possibility in his case.

Marina,

The only way to test for the presence of HPV in oral cancer is to test the slides from his biopsy. Since he smoked for so long and was a heavy drinker, HPV may not have caused or contributed to his cancer but his age and cancer location seem to point to an HPV connection so if I were you two, I would tell my clinic that I wanted my slides tested for HPV. Forget the cell phone because as of right now these are the only identified causes of oral cancer: Tobacco, alcohol, HPV, Betel seeds and some have also linked marijuana.

Have they mentioned a neck dissection?

Most likely he will receive a combination of chemo and IMRT (Intensity Modulated Radiation Therapy) for 6 to 7 weeks. The chemo may be anything from weekly to every 3 weeks and his radiation will most likely be daily unless they double up a day each week. The whole Tx plan is designed to maximize the killing effect of the radiation and they usually give him the maximum dose which is around 72 Gy or greys.

Once you know more please let us know and we will be able to tell you more specifics.

Hi Marina,

I am 2 1/2 weeks past my radiation treatments. I did not have a PEG-my choice-but my Dr. certainly would have insisted on one if I wasn't eating/drinking enough. It got really tough after week 3 to maintain this, but I did the best I could. I eneded up losing 10 lbs and am now trying to regain them. I also had surgery so that was a different story as well. I'm guessing your husband won't be having surgery. Is that correct? I didn't lose my voice, nor did it change, but it did hurt to talk at times, so I limited speaking for a while. My tongue became very sore as well. As far as work, I've been out of work since the surgery in October, and probably have a little longer to recover. But, since I also have MS, that has added another wrinkle to this. I wish you all the best.

We just heard we are meeting with the oncologist next week as well as a radiologist, I guess to get a treatment plan. Neck dissection was mentioned by the ENT.

RE HPV, I thought if one of us had it, the other inevitably would. Am I mistaken here? I will mention getting his cancer tested for HPV anyway. The ENT did say they didn't want to operate on his tongue so I'm not sure of the possibility of his being tested, which is why I thought I would get tested.

Hi, Marina, As has been said above, each of us is different. In our case, the peg was not a choice, but ordered by John's Doc before his initial surgery and radiation started. He ate after his 1st surgery and through the 7th or 8th rad tx. After that, the peg sustained his nutrition and hydration levels for the most part. Given your other responsibilities with your kids and pregnancy, I would have a long talk with everyone involved about the peg. He doesn't have to use it, but if he gets dehydrated and becomes really ill at 1 or 2 in the morning, it will be tough for you to pack kids up and get him to an emergency room.It also depends on Craig's personality- will he force himself to maintain his weight or will you have to become the "nutrition police" ? You already have your hands full! Hope you have some other family or friends to support you. Let us know what the Onc and the Rad Doc tell you and keep your chin up. Amy in the Ozarks

This has to be a tough situation for your family at such a young age. I can't even imagine what you are going thru at this time. I'll be 72 the 21st and it bothers me very much. I have your family in my prayers and just hope the Lord steps in and helps heal him. You have me thinking that I should get my exgirlfriend to have get checked for the HPV. Have a great day.

Marina,

By age 50 it is estimated that over half the world has been exposed to the HPV virus but being exposed doesn't necessarily mean trouble. While a lot is known about HPV, a lot more seems not to be known. It is not known why some are affected and some are not. Our immune system may play a role in that and there are studies to try to boost the immune system's response once exposed to the virus but conclusions are probably years away.

David, what's a betel seed?

Hi Marina,

Sorry you and your husband are having to deal with this. What a lot with young kids and one on the way. I agree with Amy, a peg tube would be a great option to help with the nutrition. My husband did not have one, it was rough...at one point he required daily IV hydration. And, for various reasons we had a couple unscheduled visits to the ER. I thought it was hard and my kids were a little older.

My husband did loose his voice for several weeks. I think that varies person to person. Some people get hit hard with side effects, others do relatively well.

But, at the time when they were wondering if my husband might need a PEG (post treatment) he was so sick that it would have been traumatic, vs. having one put in when he was feeling well prior to treatment.

I will be thinking of you and your family.

I had a PEG tube put in two weeks into treatment. I weighed in at about 113 lbs before treatment, so I was not given the option of not having a tube, it was not up for debate. It turns out that I did not need to use the tube, but everyone reacts differently to treatment. I certainly did not like the tube, and I think I had a harder time with PEG than I did with treatment. That being said, if I had needed the PEG, I am sure it would have saved my life.
I didn't lose my voice during treatment. I sang everyday during treatment(at my caregiver's request) and I have no idea if that had any bearing on keeping things working in the vocal area.
I did not work during treatment because I moved to be closer to my Cancer Center, but I was certainly up and about everyday and never took naps.
Marina --I am so sorry your family is being put through this and my prayers are with you

Hi Marina- My husband has had a peg since his September 07 surgery. He has still lost about 47 pounds and didn't need to lose any-he always had a slim build. I shudder to think what would have happened without the peg. He is on Erbitux as a treatment now and will still have the peg until he gains some weight as the treatment makes him nauseous at times. He would love to get rid of it but it really has been a life-saver, literally.

I will be praying for you and your family. I have three children myself even though they are teenagers. Keep the faith, Sue

Margaret,

Here's a link. We have these in Florida but I wasn't aware that some people chew them for the effects. My Dr Trotti had them listed on his slide listing the causes of SCC. Live and learn.

http://en.wikipedia.org/wiki/Betel_nut

I was diagnosed March 9 05 with stage 3 tonsil cancer with metz to neck and head lymph nodes. I was 51 at the time .Non smoker moderate drinker. I was not given an option on the peg tube They inserted one before I even started treatment. That and my port on the same day. The peg saved my life. After 2 weeks of radiation I could no longer eat. All my nutrition, fluids and pills went thru my peg.After a week or so it became part of me.I realized this tube was a important part of the process to save my life.I'm coming up on my 3 years since being diagnosed and I'm doing very well.You and your husband must stay strong and meet this battle with a very strong and positive attitude. The mind is the strongest organ you have going for you right now. My wife was a huge reason for my survival. There will be days ahead when baby steps will be your measurement of progress. My thoughts and prayers will be with you and your family every day.

Thanks everyone. I've talked to my husband and we've agreed that getting the peg tube is a good thing in our case. Not just because of emergencies but that it may actually be less traumatic for our kids than to see him choking/gagging etc having difficulty eating.

He had a further CT Scan of his chest, chest x-ray, and full mouth wrap-around x-ray this week prior to seeing the radiologist and oncologist next week.

Is the wrap around x-ray of his mouth just to monitor his teeth or is there some other reason they do that?

the xray of the teeth is to make sure they are in good shape before radiation. They will want ot do any extractions that need to be done before radiation because your jaw is very very brittle afterwards. For example I had a wisdom tooth that hadn't come down yet and they took that out before my surgery and radiation and chemo treatments started.

So sorry you are going through this Marina - I know it is't easy .

Do a search of the main OCF site for the word osteoradionecrosis (ORN). The bones of the mouth (the mandible and the maxilla) do not become brittle, but they do lose much of their micro vascularization from the radiation treatments. This means that they heal poorly. Extractions and other extreme procedures after these treatments can cause a chronic non healing wounds that lead to far worse things. So before beginning treatments the oral environment must be in the best possible shape. Teeth that are compromised by periodontal disease or are not restorable have to be extracted prior to treatments.

Marina,

I was diagnosed with oral cancer in early June of last year. Your husband

The 17th of Jan, they took all of my teeth because of the Rad implants. Rads will decay the teeth and cause an infection, which u surly don't want. I had 2 infctions and belive me, they are miserable. Had to have both drained. 1 more week of rads and chemo the a coupks of days off . Then the implants will be put in. I wish you all the luck in the world. Keep a stiff upper lip and listen to what you are told,.

I had a PEG tube inserted prior to starting treatment when my RO told about the 30 year old body builder he treated who dropped sixty pounds before consenting to a PEG tube. I figured it would be insurance to have it in and if I could get by without using it, all the better. It turned out that I had to use it because of the throat pain. It allowed me to remain hydrated, take nurishment, and when the pain was especially worse, take some meds. Throughout I tried to swallow as much as possible, but was not always successful. The PEG was removed in October after I could show my ENT that I was eating and maintained my weight for a month.
I too continued to work during this ordeal. I missed probably two weeks total, most at the end of radiation, when I was too weak to do much, a week when they removed the lymph nodes. I am a title insurance agent, so my job is very sedentary, thankfully. The major problem was the oxycodone and fentanyl. I did not realize how dopey they made me. Thankfully, my staff covered for me. While on the oxycodone and fentanyl I did not drive. My youngest daughter is an attorney and she pointed out that any accident, whether my fault or not, would result in no insurance coverage because of the drugs, and in all probability, I would lose my license. That was enough to keep me from behind the wheel. I ended all the narcotics in September with no apparent withdrawal symptoms.
My ENT and OC both told me I would go through hell, but recover. They were so right.
Hang in there, a positive attitude is the best defense.

Hi - I was diagnosed 3/07 with Tonsil Cancer, with mets to right neck lymph nodes (3 were positive), had all lymph nodes removed 5/07, had radiation treatment which started in 8/07 and into my 4th week of radiation - I decided to have a Peg Tube - for me it was the right thing to do - radiation effected my swallowing - my voice was effected only for a short time - I went to swallowing therapy which ended ll/07 and I returned to work 12/07 and have my voice, was happy that I had the Peg Tube. You have to take one day at a time, support him and it is a good thing that you joined this support group.

I see some have told you that he won't lose his voice, but all the years I've been on this board, it seems to be par for the course to lose the voice at the end of treatment for approx a week or so. I did but it wasn't that bothersome. I got out of answering the phone!
Take care,
Minnie

I had XRT for an unknown primary and didn't lose my voice, but then do not talk alot. My voice which was always very low, got lower and gravelly. Couldn't sing at all after radiation. Pretty much stayed that way until I got cancer of larynx 4 years later and they had to remove my voice box. If he loses his voice it should only be for a short period.

Take care,
Eileen

[quote=minniea]I see some have told you that he won't lose his voice, but all the years I've been on this board, it seems to be par for the course to lose the voice at the end of treatment for approx a week or so. I did but it wasn't that bothersome. I got out of answering the phone![/quote]


I didn't lose my voice during radiation, but I enjoyed the two weeks after my tonsillectomy when I couldn't talk because I did not have to answer the phone either!

i really dont know how to ask this. what happens when you lose your voice box. i go for a biospy thursday bec of a nodular on my vocal cord same one . could it be from rad. ? that was the only place the pet lite up please help

It could be from rad but more likely from your continued smoking.

If it is on your voice box, it may result in a total laryngetcomy which means you will have a permanent trach and now breath through your neck only. Voice can be restored through a TEP, electro larynx, Utlra voice if you wear dentures, or esaphageal speech. Some may lose the ability to speak altogether.

I have a TEP. I have a small slit in the back of the trach wall where they put a small prosthesis with a small hole in it. When you cover the hole in your neck, the prosthesis forces the air up the esaphagus and out of your throat and allows you to speak.
Not everyone is a candidate for a TEP. Only your surgeon could answer that.

I do hope you do not have to have this surgery, but you did ask the question and hopefully I answered it. Keep us posted.

Take care,
Eileen

Hi
We've had two visits with two oncologists this week.

At the first visit, Craig made a decision not to get the PEG. This was because the doctor seemed to think it was 50% chance of needing it, plus he insists that Craig must eat something orally anyway to exercise the muscles and avoid excessive scar tissue forming.

However, at the second visit we were told that his diagnosis is now Stage 4a. This seems to be because the right lymph node also now has a hard lump (how long it's been there we don't know) and the left lymph node is 3.5cm. This may change the PEG decision.

Craig is to be treated with radiation daily for 6 weeks and three rounds of chemo which will be administered in hospital taking a couple of days each time. The radiation will now be on both sides of the neck. They have stated they don't want to do surgery unless it is absolutely necessary (including a neck dissection).

He still has a PET scan to go so there could be changes to the treatment plan.

I just want to say thank you for all the supportive comments and information that you giving me. It really helps to know we're not alone in this.

Having radiotherapy to both side of his neck/face will be very very tough.I would advise you to get a PEG fitted, after all you dont have to use it,but believe me you will be very grateful it is there if you do need it,particularly if he cant swallow his medication.

good luck liz

Marina,

The staging as a IV should not be an indication that a Peg is warranted as his Tx would have probably been the same at less than a IV. I was a IV and I decided not to go the Peg route. My RO was like his, kinda 50/50 but deferred to my decision. It was tough but if I had to make my decision today I would still not get the Peg. Whether or not he gets the Peg the most important thing is to keep swallowing.

Hi Marina,

You've got lots of advise here, but I thought I would add my experience.

I had a modified radical neck dissection, followed by 6-1/2 weeks of radiation (5-1/2 weeks on both sides and then 1 week just on the left side where the lymph nodes were involved) with weekly cisplatin and erbitux.

My RO did not recommend a PEG, advising that if I needed it I could get it put in later. One of his nurses was more insistent that I should get it, but I elected to wait.

Eating became extremely difficult after a short time (I'll say 1-2 weeks, but I don't really recall exactly). I fairly quickly developed a very simple diet that I could tolerate, consisting of an egg-beater omelet and 2 Boost Plus for each meal. I also drank a lot of water between meals. I lost maybe 5 lb total during treatment. I did use a codeine-tylenol mixture daily, as well as the magic mouthwash just before eating the eggs - these helped with the raw throat.

Anyway, that's my story.

Best wishes,

Chris

Hi Marina - we too are awaiting our scan and struggling with the PEG or no PEG... I don't think there are any right or wrong decisions and since there are going to be so many things we can't help/control once this all gets going I'm kind of leaning towards let's do it. If dan doesn't need it - GREAT and I intend to do evertyihng I can for that to be the case, but if he does need it I would rather already have it.

I'm praying for you and think of you often as we begin this journey with our families.

Michelle

Yes it's a tough decision but IF, and I stress the word IF, you can keep him swallowing, then yes he would have the best of both worlds. I didn't have the Peg so I didn't have the choice but it appears that some that do get the Peg seem to use it to their ultimate disadvantage. Believe me it is easy to use that Peg because there were many times I wished I had one but I survived without any swallowing issues so my advice leans towards not getting one.

I had the rads and erbitux on both sides of my throat and my mouth. Maybe I'm justtoo hardheaded for it to bother me, but I haven't needed a PEG yet. Tomorrow morning at6:30 I have to be in the ready room , LOL , and sceduled for more biopsies at 8:30. Then Friday the rad implants. I do think a PEG would help me if I need it but so far can swallow, altho it's hard at times.

PEG wasn't offered to me either time, and I agree with David that from what I have seen here I'm happy that it wasn't as it forced me to keep eating, keep swallowing. Having said that, we all do what we need to survive. Donna

Hi Marina, our thoughts are with you. I just read your initial post today, and now you've been in this hell for 15 days. The good part is that you know more facts and can begin to make progress with decisions. Most importantly, you've already done a lot of research. Good for you! Knowledge IS power, and you and Craig will benefit so much from your full participation as experts. You are the best experts about yourselves, so keep asking questions of your health team until you are satisfied that you understand what it is they're proposing.

So how are you holding up? I want to reassure you that I was extremely ill in 2006/2007, and now I am extremely healthy and grateful for every day.

My PEG was mandatory, along with the Hickman catheter. They were both important to my recovery, though I still made myself swallow at least once a day. Even with the PEG, my weight dropped to 103, and I'm 5'5" -- so I'm not sure that my cells would have received enough nutrition to recover as well as they did, had I not had the PEG. But every situation is different. Hopefully by now you have decided what will work best for Craig.

God bless you, Craig, and your children. You have a world of support right here -- I am so glad you found the OCF. I apologize if I've repeated things you didn't need to hear again, but I've been offline for weeks and just now read your post of 2/10. I wanted to respond right away and tell you that your family jumped right into my prayers as soon as I read your paragraph.

Do keep us posted. We are your best cheerleaders, because we've been through it and totally empathize. You and Craig will get through this, Marina, and even in many GOOD ways, your life will never be the same again. That is one thing we all share, for sure!

Carol

For what it's worth, I can't imagine how painful it must be to have to have a PEG inserted during or right afetr treatment when your throat is a raw mess (they go down the throat to insert it). I think there is misinformation being given here where posters saying things like "it appears" and "from what I've seen here" are not telling you that there is NO data indicating that having a PEG means one is less likely to swallow or more likely to develop swallowing problems, this is just their own form of illusory correlation because they observe that people with swalowing problems have PEGS. Duh. That doesn't mean the PEG caused the swallowung problem.

Again, It is cLEAR that if you develop swallowing problems, which develop from the effects of radiation, you will need a PEG to keep up the nutrition and I can't IMAGINE how agonizing it would be to have the surgery to insert a PEG (which they do by putting something down your esophagus) when your esophagus is already raw and painful from raidation. I think people telling you their pesonal mythology about why they don't have swallowing problems are playing very fast and loose with other people's lives and how well they get through treatment.

I was told by doctors at Dana Farber, one of the top CCCs in the nation that they required the PEG for all patients getting both chemo and radiation because it was so improtant to keep up nutrition during treatment. Your logic is exactly right that you don't have to use the PEG just because you have it, but having it COULD make a huge difference in how you get through treatment and your recovery.

Nelie

This topic will never die here. I have lost count of how many times it has been discussed since 2002, and the original board. The take away from all this has to be something very simple. You can't heal or get through things without proper nutrition. That is not an issue of debate. If you lose 10-15% of your body weight that is a black and white indicator that you are not getting enough calories and certainly not proper nutrition... at this point if your docs are on top of things, you will be getting a PEG. If they don't recommend it the smart patients will ask why not.

Even with a PEG you can take some things occasionally by mouth as the pain allows you to. That comment should satisfy those that continually post here that you somehow forget how to swallow, or that you develop dysphagia or strictures from not using your regular "by mouth and throat" eating process. Personally from the therapists that I have talked to and the doctors I deal with, they agree these are treatment damage related issues and whether you PEG or you don't PEG, it isn't going to change things. Radiation is a bitch and the scar tissue that it forms, the nerves that it destroys, and many more things, are components of why these issues occur. Getting a PEG midway means that you are ALREADY behind the nutrition curve (which you could have avoided) and you are already compromised nutritionally.

As to David's comment, I fail to see how someone can use a PEG to their ultimate disadvantage. He clearly thinks that people become dependent on them. Having had one of these things (which he clearly states that he has not) I have the advantage of knowing this from both sides. I didn't want a PEG. I fought it like crazy for reasons that were entirely emotional and not logical nor correct. I lost a ton of weight and my docs forced me into it. In retrospect, I don't know what I was so afraid of. In the beginning, except for water, it was all I used, my mouth was bloody with mucocitis, and every inch of it was raw and painful to the extreme. Eating, even on morphine, was not an option. Everything, including my pain meds went into the PEG.... 8 months later I was about 50/50 PEG and ultra soft foods. One day I was finally all on oral feeding, and 30 days after that when I was sure that it was for good, I took the PEG out myself. ( Another story) There is no reason to believe that a PEG is used to anyone's detriment. That means that you believe the problems arise from lack of use of the throat, and that is contrary to medical facts as to why the problems arise. Having said that I would certainly try to take things by mouth as long as it is practical. It adds a sense of normalcy to your life, if you have a taste left, it may even be pleasurable, and from a purely psychological perspective it reinforces the fact that you are still living somewhat a normal existence. If you do find yourself 100% on a PEG stretching exercises (tongue blades between the front teeth etc.) are always going to be mandatory... I take that back, those are mandatory for anyone getting radiation with or without a PEG.

Marina- As I have said before, my husband's PEG has been a lifesaver as the surgery and the treatment made it impossible for him to get nutrition and fluids orally for quite some time. Even though he can take some my mouth now, I believe he would be in worse shape without it. His was put surgically into his stomach-not through his esophagus as he had alot of swelling and could not open his jaw wide enough to allow it. Since he has had more cancer appear and needs more treatment he will probably have it for some time. He has finally come to terms with the PEG and realizes it's advantages. Best of luck, Sue

[quote=EzJim] I had the rads and erbitux on both sides of my throat and my mouth. Maybe I'm justtoo hardheaded for it to bother me, but I haven't needed a PEG yet. [/quote]

Jim, you posted elsewhere that you have lost 44 pounds since starting treatment. That is 44 pounds in a couple of months or less, right? That is not a good thing. That much lack of nutrition when your body is being assualted by radiation is not going to serve you well in your recovery at all. It will keep you feeling bad for longer--not probably, but definitely.

You are obviously a tough guy and have been through a lot, but I think you should be talking to your doctor about the PEG since you will be probably feeling worse for a few weeks before you start to feel at all better. I don't think someone who has lost that kind of weight is any advertisement for not having a PEG during treatment. Many doctors would have insisted you get one by now. PLease take this in the spirit of caring with which it is intended.

Nelie

Marina

First of all, my thoughts and prayers go out to you, Craig and your family. I'm a fellow Canadian, and my kids were two years old and four months when I was diagnosed.

I was not given a choice regarding the peg as I had lost 50 pounds by the time I was diagnosed. I didn't want the peg for emotional reasons, but I'm extremely thankful my oncologist insisted as I truly believe it helped save my life. I held off on using it for as long as I could, but by the end of four weeks of radiation, I could no longer even drink water. For about four weeks, I took all of my nutrition through the peg.

I think of it as an extremely valuable insurance policy. Like many others have said, you don't need to use it if you don't have to, but it's nice to know it's there if needed. I had the peg removed two months after the end of my radiation and did not have any trouble relearning how to swallow.

Best wishes,

Sam

Hi, my husband had PEG tube. We honestly had no issues with getting it and did not realize that it is an emotional issue for people until later. It was a lifesaver and caused no problems at all. He did not need to use it until about 3 weeks into treatment. The kids (8 & 4 at the time) thought it was cool. He let them pour water down it and it would "burp" which they thought was so funny. Then, 3 weeks into treatment he was hit like a train with pain and he would have starved to death without that thing. He was able to get it out about 6 weeks after treatment. Now, it looks like he has two belly buttons which the kids also think is funny!

As far as working, my husband is also self employed so I definitely relate to the needing to work aspect of things. He functioned at 100% and worked no problems until 3 weeks into treatment. The side effects and pain came on all at once. It got pretty bad and there was no working possible. He was back to working fairly soon after treatment stopped.

Speech was an issue once again about 3 weeks into it. He could not really talk and did not have much he wanted to talk about.

This is going to be a challenging time but you will get through it. It is actually one of those things where I did not realize how challenging it was until now when I think back on it.

Marina,

My heart goes out to you. My father was diagnosed the past few weeks with stage IV cancer with the primary lesion on the base of his tongue and mets to multiple lymph nodes on the right side of his neck. He will start his first 6 hour chemo tx. tomorrow and then radiation this week. They will place a feeding tube prior to radiation for optimal nutrition and we have been trying to beef him up since the diagnosis. This is the most wonderful site, full of sincere caring and support from families and survivors who have went through this hellish ordeal. I was relieved to see such positive recovery with the stage IV cancer diagnosis, it gave me hope I needed at a time when I had no hope. Talking with the other wonderful people on this site has been a godsend for me and I am sure it will be for you too. Your family is in my prayers and I'm sending you cyberhugs.

D'Arcy

Craig had his first chemo and radiation on Tuesday 11th. He had a further 3 radiations Wed-Fri. He opted not to go with the PEG (against my wishes I might add, but it's his body).

So far he is doing pretty good, mild nausea (no vomiting) but controllable with drugs. Some drying of the mouth but still a good amount of saliva. Neck is swelling up, we can only assume as a side effect of the radiation. A couple of other symptoms I've posted about in the Medications/Procedures forum under "Day 4 of treatment".

He is still driving and working albeit with some naps in between. This has been a godsend as the rest of us have had flu all week and we've been the ones vomiting and on bed rest! I can't imagine what I'd do if I had to look after him as well as the kids. It's as much as I can do to make sure he stays away from us

Thanks for all the messages of support, we appreciate them.

Hello Marina,
I did have a PEG and it did get infected which delayed my treatment a week. However it did make taking nourishment easier especially in the later weeks. I did however take David

The peg vs no peg will really not become an issue until till the later stages of Tx and a few weeks post Tx. Until then he will start to loose his taste and then his saliva (in different stages). Loosing his taste will be his first challenge mentally to overcome. He will need to let that taste issue go and just accept it and find something, anything that he can still eat/drink to get his daily calories. Tell him that what he finds appealing today may taste horrible tomorrow and thats normal. I know I would find something that tasted great and I would tell my wife or she would just take it upon herself to stock up on it only for me to hate it the next day or so. Warning...don't fall into that same trap.

Just remember his body will be undergoing constant change from now until 18 months from now so just make sure he's prepared for a longer haul than most doctors are willing to admit. You will hear that we all are different but the majority of us experience the same issues. If I had to do a Bell Curve and based SOLELY upon my observations on this site and my off site experiences I would say 10% fare better, 10% fare worse and 80% fare the same. Lets hope he's in the better category.