Hi everyone! Update on Dad.

Just found out he is going to have 6 1/2 weeks of 5-day-a-week radiation treatments and 6 chemotherapy treatments to make the radiation work better. The medical oncologist said that the cancer had plenty of time to spread, but that it hadn't, which is good. But, I'm feeling worried again. I'm scared for the potential side effects. Lots of people have told me that each person reacts differently and some folks do great while other folks have serious side effects. They said he might need a feeding tube again if he has trouble swallowing. Some people get blisters in their mouth and feel very fatigued. They did say that the chemotherapy is a low dosage (I don't know if that's the right word) so he wont need to worry about keeping visitors away or losing his hair, etc.

Do you know which chemo? Chances are, one of us here has had it. Mine thinned my hair, but I didn't lose it entirely. (As I have very long hair, we did cut it shorter for the duration, and I did wear the special caps ... but my treatments were mostly in February, so it was cold out! On the plus side, it got my mom knitting again and she made me my new favorite knitted cap during that period.) Anyway, double check on that one ... it doesn't happen to everyone, but it does happen to a lot, and it'd be a pity to be told it absolutely won't happen if there's a decent possibility that it might. (Not trying to be a downer, just surprised to hear there's one that doesn't do that... but I know the protocols keep changing and getting better ... so maybe that's one of the improvements!)

One trick that I learned a little late in the game was to ask for wax bits to cover my teeth that had fillings, which prevents some radiation scatter and prevents some of those blisters and burns in the mouth. They'll give you that every day, if you ask. If your dad has a lot of fillings, ask about it! I didn't find out till the last week or two, and apparently it was something they should have told me up front because of it being a common thing and a fairly easy preventative. (Why wax prevents radiation going through, I do not know, but if it works, I'll take it!) For me this was a problem on the bottom teeth mostly ... don't recall needing it on the upper teeth, but my memory is a bit hazy. And your dad's current teeth may be better than mine were at that point.

That's good that they think he won't have to fret about visitors! We had to use caution, but I do a lot of volunteer work with kids and have friends with lots of kids, so that involved a few more germs. Hopefully adults will have both better health and better sense when they come to visit. Make sure they don't overwhelm his resting, but if he's got a favorite show to binge-watch, a TV buddy might be a fun thing to have. Good company for him, and a bit of respite care for you. (My own kids used to insist that they had to stay up late with me each night so they could 'take care of me so dad could rest' so they could watch more TV with me, LOL. It was actually good bonding time.)

Anyway, those were some things I encountered that maybe will help your dad out, and you ... whatever low-key hobby he enjoys (like the TV), this is the time to indulge it. And friends to enjoy it quietly with him, so you don't feel alone (if that happens ... it can be scary being the caregiver, and it must be as exhausting as being the one going through treatment, in its own way). If he likes some light reading and enjoys hobby magazines or the like, the initial chemo might be a nice time to enjoy some reading ... the later ones, the fatigue might make him doze off more (I did, to my surprise, but did do some light crafting the first couple weeks). And something for you, if they let you sit with him, or whoever is his driver for treatments. Something to suck on during chemo, if it's one that gives an 'odd taste' in the mouth ... lots of hospitals offer patient care packages with sweet little gifts, but many contain mints, and mint isn't usually an oral cancer patient's friend at a time like this. There may be other little sweet things in the chemo area that they do for patients ... they can be really nice, varies from center to center. Ours had a lady who came on certain days for an hour or two and gave every patient a hand massage! I totally wished I could reschedule the rest of my appointment days after I found that out, LOL. (I had one that was shifted a day, and met her, and she was just a sweet angel.) If you find out your center has patient care things like this, no idea how you might ask but someone must know, maybe you'll be able to get your dad's times to line up with the ones that would suit him. (or you... you deserve it too!)

Sorry if I ramble too much ... just want to share, so you and your dad can have a good experience ... there are always surprises, but not all of them are bad ones. I wish for you both the chemo days of massage therapists and kind nurses and friendly fellow patients. ((hugs)) And the radiation time slot of folks who you bond with, so you can cheer for each other each day as you end up getting to know each other a little bit at a time.

Your dad will probably be given a hearing test to establish a baseline before he gets chemo, if he’s getting Cisplatin which is platinum based. If he developed ringing in the ears or Demi I shed hearing, he should mention it to the doctors ASAP. The doctors can switch him to another kind of chemo. Cisplatin and Carboplatin, however, do not cause major hair loss. There will be some thinning but this also happens with radiation if the beams hit the hair.

It will be prudent to keep him away from crowded places as the radiation may have an impact on his white blood cell count. It doesn’t mean he can’t have visitors but if anyone has a cold or the flu, then they should stay away.

As you and him move forward, it’s likely you will have more questions. Do ask the questions on the forum. It is likely that someone will be able to share their experience with you. Wishing you and him all the very best.

I don't know which medication yet. Is 6 chemo treatments a lot? I'm sort of confused again. They said his tumor was Stage 4, T2a (I think ) and N0. They said they removed 19 lymph nodes, none of which were positive. They said it didn't invade lymph tissue or blood vessels even though it had many months to do so. They got clear margins, but one finger of the tumor extended close to the margin but when they scraped the tissues left in him they found no cancer remaining, so Dad was in a gray area whether he would even need chemo. It seems like a lot to me. They said because it had effected the bone, he'd definitely need radiation. Does radiation and chemo seem right in this instance?

I would think that the chemo-radiation in this case is to prevent a stray cell from getting into the lymphatic or blood circulatory system an migrate to other parts of the body. The number of chemo treatments depend on the dosage. There are patients who get 3 “big bags” (which my husband had) or a smaller dose each time but with more treatments. The same applies to radiation. My husband got 70 grays (units of radiation) for a total of 35 days, I.e. 2 grays each day , but in his subsequent radiation treatments, each time he got 20 grays in total over 5 days, I.e. 4 grays each day. So he actually got a stronger dose for his subsequent treatments. You may want to ask the doctors about this.

I had the six weekly treatments, and it seemed like they thought it was the standard at that time. Or maybe it was just the standard for 'just in case' when the nodes came back clear but they were paranoid anyway. My situation was a little odd ... I'd had surgery for the initial cancer that May, had the neck thingummy in August which was all-clear, and then the tongue recurrence in December. So I think they weren't taking any chances, though the tongue situation was minimal both times.

Hi Vicky. This sounds very much like my recent protocol.
I had 33 radiation treatments over 47 days, and 7 lower dosage Cisplatin chemo infusions weekly.
I could have opted for 3 larger doses, but I felt that the lower doses would be easier to tolerate, even though more frequent.
Generally, I think the effective smaller doses are 40mg each, and the large ones are effective 100mg each.
Now, this is important, the reason that I say, "effective dose", is because the actual amount of drug is based on your height and weight.
So my infusion bag showed 78mg, and I was getting nervous that I was getting the wrong dose for 7 weeks. But the Oncologist explained the adjustment to me, and I also found a dose calculator online, that eased my anxiety.
And the reason that I had 7 infusions, not 6, was because I started mid week, and there was also a holiday, so my last treatment was just shy of 7 full weeks.
Best wishes that everything goes well with your Dad. It's very good that you are making sure you understand everything. I suggest running by the Oncologist, what I wrote about the 40mg weekly dosage, and the height and weight adjustment.

Thank you, everyone! That's very helpful. What side effects did you all experience? I worry for my dad but am hoping that the fact he had the cancer removed first, and the doses are low, it will be easier on him.

Pay very close attention to your fathers intake, monitor it every single day. This is something that is within your control. Intake is the key to how easy or how difficult this will be on your dad. Every single day make sure he hits his daily minimums of at least 2500 calories and 48-64 oz of water. If your father is on the slim side he may need even higher daily minimums of 3000 or 3500 daily calories. If he is struggling to hit his fluid intake minimums, he can get extra hydration if his doc writes him a prescription for it. Extra hydration will help your father to feel better very quickly. At least thats how I remember it. I would drag myself in and get a couple bags of fluids and walk out feeling like a new woman. Always ask your fathers doc before giving him something new, even vitamins. Some vitamins can actually interfere with his treatments.

Every patient is different and will experience slightly different side effects regardless of "low" doses or not. Ive watched so many people go thru this over the years and sadly most will have a hard time and skimp on their intake. This leads to a viscous cycle of playing "catch up" thinking the next day the patient will do better but then the next day comes and its even harder. Unfortunately most will start out ok but about the 3rd week they start to notice the side effects and begin to struggle. As your father continues with treatments he will find everything becoming progressively more difficult. Most patients who had the smaller weekly dose of chemo fared only slightly better than patients who had the 3 "big bag" doses of chemo. Radiation continues working even after treatments are finished where most patients worst weeks are the first 2 or 3 weeks right after their last treatment.

Pay close attention to his hearing. Make sure you tell your father to speak up and tell you and the doc if he notices anything different. Even if its only a slight humming, its very important. Most patients will not think much of it and many patients wont want to say anything about a very minor change but they must. Certain chemos cause permanent hearing loss. Prior to getting another dose of chemo the doctor needs to be aware of any hearing changes so the chemo can be changed to something else. Do NOT let your father take another dose of the original chemo if he says his hearing has changed. The same thing goes for any change in his bathroom habits. Chemo can be very hard on the kidneys, especially on the chemo days and the next couple after the chemo is given. His fluid intake must be watched closely to make sure he is flushing that poison out of his system. Its a good idea to try upping your fathers fluid intake the day before chemo, the day of chemo and the day afterwards as well.

As a caregiver, you have a very difficult job! Make sure you take some time just for yourself. Even if its just to go out to lunch with some friends, going for a manicure, or taking a walk around the block to help clear your mind. Too often we are so wrapped up in caring for the patients that caregivers dont notice when they start becoming overwhelmed. It can happen to the best of us! Thats why its so important to take some time away from doctors, hospitals and the patient and concentrate on doing something that you enjoy. Kinda like a mini vacation for a few hours.

Dont be surprised if well-meaning friends and relatives ask what they can do to help your father. Make a list of every single persons name and contact info. Tell your friends and relatives when the time comes, you will let them know what they can do. Theres a million small things that can help make this easier for both you and your father to get thru. Picking up meds from the pharmacy, walking the dog if you or your father has one, getting the mail, grocery shopping, doing a load of laundry, taking out the trash, driving your father to treatments, sitting with him on chemo days, even giving someone the task of updating friends and relatives you will find is a big help, among other things. Maybe you could put one person in charge of taking your father to his treatment on his chemo days to help give you a break and also to enable your father to spend quality time with others who are close to him. If you havent already done so, call the American Cancer Society (ACS) and ask about their volunteer driver program and their $300 voucher to help pay for prescriptions or for transportation costs. I was fortunate enough to use the driver program a couple times even though I lived about 45 minutes away from my treatment facility. There were a couple very kind cancer survivors who drove me to my treatments which helped take the burden off my teenaged son even for one day.

Read and educate yourself with posts and all the do's and dont's for OC and its treatments. Be especially careful about washing hands, using hand sanitizer and not bringing anyone who has even a slight cold around your father. What may not be a big deal to someone who is healthy can become a nightmare to someone going thru cancer treatments. Most patients will struggle with low white counts during and after rads/chemo. It took me a couple years after finishing rads/chemo before my numbers were in the normal range. If your father hasnt yet had a full blood panel done including thyroid and testosterone levels talk to his doc and get it done right away. These numbers are very important to determine down the road what your fathers regular numbers should be. Getting this info later wont work so make certain its done prior to starting rads/chemo. Your father should have also seen his dentist for anthorough cleaning and check up and had flouride trays made (if he still has his own teeth).

Hope I didnt overwhelm you with too much info. Best wishes to you both!!!

Anything Christine says is gold.

She mentioned a prescription for hydration, which is one of the things I didn't know about at the time, though being on the feeding tube, I was mostly okay. But since my chemo was in the same building as my radiation, if I had actually had an issue, my doctors would have been able to just send me upstairs and make them hydrate me ... if your dad's treatments are all in one location, that can happen for him, too, if necessary. Is he having a chemo port put in? That makes a lot of difference, getting all those pokes and prods, and helps for the blood draws and hydration and stuff as well as the chemo infusions. (They may do chemo without it, I don't know, so I'm asking just in case. It felt scary, but it turned out to be well worth getting.) So ... totally ASK if you're worried about anything, and get the doctors to listen.

Let them know when he's in pain (especially if he's anything like my dad was, and refuses to admit pain to medical professionals). It took me time to realize that my pain was above and beyond, but when I did say something, they were on top of it and had meds (pain patches, etc) ready to go. I just should have asked sooner ... it's always okay to ask.

Side effects really do differ. I mentioned that I did have hair loss, earlier. I knew to expect it, but it was still very surprising. Given the radiation and surgeries and stuff, I'd already planned ahead and had it cut short (likely not an issue for your dad, unless he grows it waist length like I do, LOL), but it still startled me how much there was to lose ... we have more than we think! It's not a terrible thing ... just something to prepare for. Not sure what your temperatures are like, but do be prepared to guard against sunburn and such if this begins to happen. And for maybe a year after radiation, I was cautioned to guard against too much sun ... we had a beach trip half a year later, and I wore a big sun hat to protect my head and my neck ... my hair was doing better, but I also had to protect my neck, which looked healed but still needed care. Just one of those little things to keep in mind ... my initial stuff was in winter, when we don't think of such things, but this is summer, and it might matter for your dad now.

Some folks get nausea, some don't. There are prescriptions for that. Sometimes they even include some of it in with the chemo treatment ... they'll tell you if they do, and also give stuff for at home if needed. That was one issue I was blessed to avoid.

When you find out which chemo treatment they plan to give your dad, you'll be able to look that up more specifically, and also those here who've had it can chime in more specifically. I'm one of those who reads all the prescription pamphlets with meds I get because if there's a wonky side effect, I'm bound to get it ... but since they don't hand those out at chemo centers (maybe another thing one can ask about?) reliable websites are useful in that case. (I did read the info they had me sign off on at my first treatment, and refused at least one treatment based on the paperwork they gave me ... interesting story on that one ... but the nurses were great about it once they understood I was serious.) Anyway, that goes again with Never Be Afraid to Ask. They WANT to help.

((hugs))

Kristen

As far as the Chemo, the major side effect that I had was slight ringing in the ears. Also, I felt a little off the 3rd and 4th day after each infusion. I didn't want to say "queasy", because it wasn't quite exactly that bad. I was infused with 2 anti nausea drugs during each infusion, and also had Zofran pills to take on demand, but I only needed them twice, and I never vomited. So I can't complain too much there.
The other issue, was my veins being sore from being poked so much, so try not to let them put the catheter in the same area all the time. Especially if he needs infusion hydration for a week or two after the treatments. They let me keep the catheter in for a few days if I was getting consecutive hydration infusions.
Now, the radiation was a breeze at first. Don't be fooled, it takes multiple visits to kick in, but I see the side effect time line varies greatly when I read though the forums.
Throat mucus will develop which will cause sleep problems, and coughing, and just makes everything orally more difficult, like brushing and gargling. His neck will get sore from the skin being kind of burned like a bad sunburn, they may give you a skin cream, or you can purchase OTC aquafor. Just don't apply it for 4 hours before radiation, it's basically Vaseline, and I guess gets too hot during the radiation. Most people apply it immediately after each treatment. And the worst of the side effects, eating issues due to loss of taste, and throat pain. So it's good to know it's normal, and will be an issue during and well after treatments. Having a feeding tube, is a very complex discussion that I won't get into. I just managed to get by without one, but it was very close, my weight dropped very steadily the last few weeks, and up to a few weeks later.
I managed to just avoid it by getting hydration until I was able to swallow fluids without major pain.
Don't be scared by this, knowledge is good.
I was able to handle the side effects so much better because of the wealth of experience our fellow forum members provided here.

Found out today that they'll use Cisplatin. I didn't go to this appointment with Dad as I had to work, so I don't know much more about what they talked about. I do know that they said the day each week that he does his chemo, it'll be a 6 hour visit. They said they'll give him fluids before and fluids after and that it will take that long to do it. They said something different than the oncologist in Boston. In Boston, they said 6 1/2 weeks of radiation and 6 chemo treatments. Here in our home state, they said between 5 and 7 weeks of radiation and chemo. I think I may call Boston on Thursday to find out if this is correct, or something that got screwed up in translation.

Does anyone else here have Verrucous carcinoma? I am reading online and a lot of medical articles are saying that they treat most patients with surgery only, and that most patients do not have recurrence. One article says one patient of 22 got radiation after surgery and he had a secondary cancer start in his tongue 6 months after radiation. Maybe I'm just looking for a way out of this chemo and radiation, but I wonder if they're treating this like other kinds of SCC and shouldn't.

Just met with dad's radiation oncologist. They told us all of the possible side effects of radiation. It's scary stuff. They said he'll be getting 30 treatments and 30 grays. I'm even more worried now, I think. It's so much to go through! Just waiting for him to get his mask made and crying a bit. By the way, they changed his diagnosis from verrucous carcinoma to just squamous cell carcinoma.

30 grays over 30 days is quite doable. My husband had 70 grays over 35 days the first time, and then 20 grays over 5 days twice. The first time he had multiple side effects, the remaining two times were not bad at all although he was getting more grays per day (20 divided by 5= 4 grays a day). Has your dad had his teeth checked and fluoride trays made? That should be done prior to radiation starting. Keep records of his daily intake, get him a Waterpik so he can rinse the gunk out of his mouth (use it on the lowest setting with the tongue scraper attachment and with a bit of magic mouthwash thrown in), put a humidifier in his bedroom and maybe set up a station with things he might need in the sitting room. He’ll get through it and you will too. Wishing you two all the very best.

It's so scary. The radiation oncologist said if she were in his shoes she would definitely do the radiation, but maybe not the chemo. She said it was a soft recommendation he have chemo because he had no lymph nodes positive and a close margin, but it was a clear margin. She said just the radiation would give him about an 80% chance of it not returning, and with chemo, too, his chances would be a tiny bit better. This, of course, made him rethink the chemo altogether. He asked me what I thought he should do. I don't know what to do! I said I think I would probably get both, to give him the best possible chance, but chemo is scary stuff. If he doesn't REALLY need it, should we put his body through that?

What is magic mouthwash?

He has not been to the dentist. They said he could wait for a dental clearance, but he's already behind schedule for treatment and they dont really want him to wait any longer. He doesn't have any teeth in his lower jaw on that side, the treatment area, and only two teeth on the top on that side. All of his other teeth are in decent shape. The radiation oncologist said he should see the dentist after treatment.

They made his mask today with a bite block in his mouth and said that should help keep the radiation from really dosing his upper jaw.

He is still having trouble opening his mouth really far, and he is going to keep doing his yawning exercises, but that's got me worried too. She said radiation can cause the muscles to get worse.

The magic mouthwash is given to radiation patient to help numb the pain from the blisters in the mouth and the sore throat. Different hospitals have slightly different formulations but they all serve the same purpose.
You can get him a Therabite to help him exercise opening his
mouth. I know some people use stacked popsicle sticks. There are also people who have tried the Therabite but don’t think it’s worth paying so much for it. You can do a search on the forum. There’s been a number of posts on it.
I understand that the chemo acts as a radiation sensitiser and helps the radiation work better. There are different kinds of meds that patients are given to help them deal with the nausea and the discomfort. If your dad is seeing the medical oncologist, make sure you talk to the doctor about your worries and see what the doctor’s opinion is. I’ve found that being open with the doctors has advantages to it.

You definitely want the magic mouthwash ... ask for that, and they'll know what it is, or your pharmacy will. As they said, it's got slightly different formulations everywhere, but it really does help. I hated that stuff and still used it because it did help.

After radiation and some healing, you can get your dad to a speech and swallow therapist. I saw one. Technically would be still seeing one, but took a break for the denture surgery stuff. She did wonders for me ... helped regain speech, taught me swallowing techniques, helped me learn massage techniques to help the muscle damage and ease the lymph node damage. Worth her weight in gold, and then some. I can't wait to get back to her.

As for chemo ... that's up to each person. I think the radiation did more damage than the chemo, honestly. But everyone will have a different experience, and who can tell what symptoms to blame on what, after too much chaos. Definitely talk to the oncologist directly, and ask about the side effects of each drug that will be in his chemo mix. They can adjust it to be what he needs, leave part out if it's not appropriate, and so on.

Today was radiation treatment 10. He's starting to get blisters on his tongue and having some pain with eating. His face is a little red. He had one cycle of chemo and though his blood work looked terrific, had some belly pain on the left side, hiccups, heartburn and constipation along with it and they did no diagnostics on what could be causing his stomach pain. Their only suggestion was to give him Miralax and encourage him to take more Prilosec, so he skipped the second cycle. Just before surgery, he was told he was a diabetic. In the hospital he was on insulin, and had some digestive trouble with the regular metformin, so they changed him to time-released capsules in between surgery and his first treatments. He stopped taking his metformin last week and the belly pain went away. Tomorrow is scheduled to be his next chemo, but I don't know if he'll continue with it after the radiation oncologist's comment about it not being totally necessary, his symptoms and the staff's inability to help with the symptoms. I can understand his reluctance, though I do wish he would try to do another cycle.

The chemo acts as a radiation sensitizer, it is also meant to catch the stray cancer cells so there’s less chance of metastasis. For that purpose, it is important. I agree that being diagnosed as diabetic right before surgery complicates matters.

How do they know if they got all of the cancer/ if radiation is necessary? Is a PET Scan? Can't they do one of those on Dad to see if they got all of the cancer with his surgery? His surgeon said he got clear margins. He said there was one part of the tumor- he called it a finger- which extended close to the margin, but when they scraped a bit more tissue out of his mouth, there was no cancer left in the tumor bed. I get the premise of the chemo and radiation-- that they want to kill anything they missed with the surgery, but how, if he got clear margins, none of the 19 lymph nodes they tested had cancer and the tumor hadn't yet involved blood vessels or lymph tissue, would there be any cancer left to regrow?

Hi Vicky

A pathology lab will examine what the surgeons removed, just like they examine the biopsy. There should be reports for those. If the pathologist found some blood invasion / nerve invasion, chemo may be needed with Rad. If the tumor > T2 , Rad is needed in my case

Good luck

A PET scan cannot see tiny cancer cells floating around, only after they settle in and start growing into a tumor. The rads and chemo are necessary to catch those free cells (if there are any) and kill them before they move on anywhere else. Did your dad have a PET scan as part of his diagnosis to see if there was anything of concern elsewhere? Likely it will be recommended in the future for a time. I know you're worried about how he will fare with rads and chemo, none of it is easy or pain free, but it is necessary to be sure they got it all. I just had a small lesion on my tongue with it close to a nerve but not in it, the doctor did not check my lymph nodes. He took my case to the tumor board and the consensus was to do radiation but no chemo. I had a clear PET scan before surgery and will get another next month (fingers crossed). Two doctors have told me I should have no more problems with this but my ENT I think is cautious. There really is no positive way for them to know for sure that there are no cancer cells left after surgery. My opinion about oral cancer after research is that it is tricky and can be aggressive, if the doctors think your dad needs the rads and chemo, do it. But insist that they help with the side effects, that is what the nurses are for, if you need to talk to them every day about something, do so. If you look at many of the bios of people on this site, there are recurrences, so it's best to treat aggressively. Hope you and your dad can hang in there!

Dad skipped two rad treatments this week. Pain was too much. His radiation oncologist gave him new medications to try and he has been able to rest, eat, drink and talk. Boy, I hope we make it through this! He's lost 20# or so since his diagnosis. I wish we had gotten the same message about chemo and rads from both sets of doctors. One said do both and one said do radiation for sure, but chemo is probably overkill. Makes it hard to weigh risks and benefits when they don't agree.

Anyone here make it through rads without a feeding tube? What did you eat? Seems like everything but eggs, plain yogurt and sardines hurts dad's mouth or gives him reflux.

Vicky, yes many OC patients have gone thru rads w/ chemo and not had a feeding tube. When I was going for my feeding tube consult I was so horrified about the thought of having a plastic tube sticking out of my stomach because I wouldnt be able to eat by mouth that I originally said "NO!, thats not for me". At that point I was so overwhelmed by all the appointments and running all over the place to get everything done before I could begin my treatments. I feel like everything was out of control and I had no say in anything. When asked what I wanted to do, it was my first opportunity to say yes or no....I said no. Ive spent lots of time over the past 11 years reflecting on my no decision and why I changed my mind. That difficult choice in 2007 is similar to going car shopping... a salesman approaches and asks if I need help, most often I will say no even if I really did have specific questions. Sorry!!!! Thats more than enough of my long winded stories!!!

Years ago I started a list of foods that are less spicy and have a smooth texture which usually makes them easier to eat for patients who have a hard time swallowing and/or eating due to a sore mouth. These foods are sort of bland but they have worked for thousands of OCF members over the years.

Ask your fathers doc to write a prescription (with refills!!!) for magic mouthwash (MM). There are many variations of this. I had a mix of malox, lidocain and benedryl. Your father needs to take 1 or 2 teaspoons in his mouth and swish it around as best as he can. After about 60 seconds he should spit it out. The MM should numb his mouth long enough for him to be able to eat without it hurting so much. Its ok to use the MM if his mouth is bothering him other times too, just never swallow the MM.

Milkshakes and smoothies are easier going down than many things. Also try ensure or boost to try taking in the most balanced diet as possible. The following list should help you to find things you can eat easily like canned peaches (these will slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery, plus the extra calories sure didnt hurt. You may find that would help you too.


List of Easy to Eat Foods


Here is a recipe for something I used to make and drink when I went thru treatments and recovery in 2007. This shake has anywhere from 1500-2500 calories depending on how its made. The list of easy to eat foods may will you too, they mostly have a smoother texture and are easier to eat than most other foods. I used to like the canned peaches, they would slide right down with minimal effort chewing and swallowing.

You mentioned your father had lost 20 pounds. Weight loss is a clear sign he is not taking in enough which probably makes him feel lousy. It is vitally important your father hit the daily minimums of 2500 calories and 48-64 oz of water every single day. If he was hitting at least 2500 calories daily and he still lost 20 pounds then his daily calories must be increased to 3000 or 3500. I know it sounds like its way too high but considering the patient who is fighting cancer and at the same time trying to heal his body from the rads and chemo damage. Its kinda like how professional athletes must dramatically increase their daily calories when they are training due to burning them off so quickly. Some athletes take in 7000 a day and never gain an ounce. I would drink the chocolate, peanut butter milkshakes daily and some days I'd have 2 or 3 which should have been enough but it wasnt.

An alternative to getting a feeding tube this late in the game would be to get a nasal tube. They are more temporary and do not require surgery to insert them or to remove them. It can be done right in the gastro doctors office and would be a huge help to bring your fathers intake up to at least stop his spiraling weight. If your father had just started rads then I would suggest going ahead with the regular peg tube but he past the half way point (I think?) so the nasal tube would be so much easier for him.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to whatever consistency works best for you.


Centrum has an adult liquid multivitamin out. Ive been taking it daily and its helped me tremendously. Its available in many grocery and drug stores and runs $9-$11. Maybe your father could try it? Make sure you ask his doc first to make certain the multivitamin will not interfere with your treatments


Managing pain is something that must be dealt with! Being in pain makes every single thing so much more difficult for patients. I suggest asking his doc for the fentanyl patch. It takes about 24 hours after putting it on for it to kick in. Fentanyl is the strongest pain medication available. Patche doses start at 12.5 mcg fentanyl up to the 100mcgs strength of the patch. Most patients who use the patches start off with 25 or 50 mcgs and go from there. Im guessing your father needs 50mcgs to help him manage his pain. The patch is for patients who have a long term type of pain. Its not for temporary things like a bad migraine, pulled muscles, etc. This type of medication is a step up and step down one. Your father may not notice much of a difference until he has the patch on for 24 hours. This kind of medication is something the doc must write a prescription for and then take it to the pharmacy. It cant be called in, I guess thats called a controlled substance. After the first 2 days (48 hours) the patch has been put on and your father is not noticing that it helps manage the pain, call his doc. The doc will probably bump up the dose to 50mcgs, or tell you to put on another patch so his total mcgs if starting at 25 would be 50mcgs. Change the patch every 72 hours and always put it in a new place. Everyone forgets (especially me!!!) so mark down the time and date a new patch has been put on. Its easy to keep track of it if you write this down right away so you or your father do not get the days wrong (very easy to do!). Most members who have used the fentanyl patch find its very easy to use and helps to control their pain. I definitely recommend this to anyone who is in substantial pain. Your father still should get other prescription pain meds in case he is having a bad day and needs more than the patch to manage his pain. Thats called breakthru pain and unfortunately this can happen frequently.

Its very important to read all the directions and follow them exactly when using the patch. Never cut, tear, rip, fold, or in any way alter the square or rectangle shape of the patch. Do NOT take long hot baths or showers while using the patch. Exposure to heat could cause the patch to release too much medication which can cause serious medical issues. Immediately report any problems like being dizzy, confused, or overall not feeling well after replacing the patch.

Pay attention to your fathers water intake. If he is struggling to eat he may not be drinking enough either. This can result in quickly becoming dehydrated (along with malnourished from not eating enough) which will make him feel absolutely horrible. I ended up hospitalized a few times for dehydration/malnutrition and it was some of my very worst days. Every single day your father needs at least 48-64 oz of water. Luckily some of that can be found in the food he eats so that should make it a little easier. Its very important on chemo days (plus the day prior to and after) your father drinks extra even though the nurse will give him a bag of extra fluids he still needs to take in more for those 3 chemo days to help flush that poison out of his system. If your father isnt able to meet his daily fluid intake ask his doc to write a prescription for extra hydration. Usually this can easily be done right in the chemo lab after his radiation treatment. Make sure to ask his doc if the prescription can be written saying its for unlimited hydration treatments! This way if its a Saturday, Sunday or holiday your father can still get extra fluids. I know getting extra fluids will immediately perk him right up. Every patient Ive advised to get extra hydration has reported they or their patient has felt so much better after getting a couple bags of fluids. Its definitely worth the time it takes!!!

Im sorry my post is so long!!! I hope I have not overwhelmed you with too many things at once. When I started writing it there just seemed to be a million important things to pass along. Best wishes to both you and your father!!! Being a caregiver is tough, make sure you are taking time for you as well.

Thank you, Christine! That makes me feel better, knowing that other people have done it. He's just totally against getting a PEG tube. I think this is because he worked in a mental health institution for many years and saw some pretty horrific medical things done to patients. He keeps saying "I'm going to have to get that damned tube" like all the time, and its clearly stressing him out.

He is half way through as of today. Today was treatment 15.

They gave him the magic mouthwash. Here, they call it Mylanta Forte. Same formula you mentioned. It helps some, but is not that effective anymore. They gave him some new medications, gabapentin for neuropathic pain, which he says is helping with the stabbing pain he gets in his tongue sometimes, and Doxepin, which is actually an antidepressant. The pharmacy compounds it with a liquid and it totally numbs dad's mouth, which is cool. I am hoping it has a little added bonus of helping with his depression. He still has not said anything to his doctors about that, but he hasn't been as negative in recent days. The social workers have been helpful in finding grant funds to help with some bills, and have been great at listening to him vent.

Dad's driving himself to treatment 3 of the 5 days and is pretty reluctant to try opioids because he wont be able to drive. He loves cars and driving, its one of his big pass times. He's taking one kind at night, but only when the gabapentin doesn't work.


They're doing his blood work every week and it looks good. The nurse did say she was going to recommend he get some fluids regularly, but so far they haven't done any. Kidney function is great.

Dad is diabetic, and his blood sugar seems to be pretty regularly around 250-300 when it's tested. He stopped taking his metformin, and stopped having stomach pain. He hasn't been able to see his primary care (it seems like there is no time for anything but getting to radiation these days). The nurse said she wouldn't even worry about his diabetes right now because he is losing so much weight. We're trying to add protein to the things he eats to help with the blood sugar spikes.

I'll read through your list of foods! Blender gasket ate it yesterday while we were blending up an avocado/banana smoothie, so while we wait for Amazon to come to the rescue, we're back to finding soft things to eat.

Pretty much the only thing I could get down was liquid, even a few weeks after treatment. No pudding, no eggs, no yogurt. I lost 35 pounds and much of that after rads ended. One member here gave me a link for high calorie Boost, this might be an option for your dad. https://www.ebay.com/itm/Nestle-Boo...72738251704?_trksid=p2485497.m4902.l9144
A couple of these a day, maybe mixed in a smoothie with other high protein items, or to supplement his intake. I could not keep up with Christine's recommendation of daily calories, it was just too hard. But the more protein and calories you can pack into a drink the better! I used protein powder and peanut butter powder, I was told to throw in an avocado with a smoothie. My after rads treat was a run to Jamba Juice for a Protein Berry Workout Smoothie with an extra shot of protein. Towards the end and for a few weeks after rads I was on percocet 24/7. Your dad will likely need some form of opioid, and need daily help to drive to appointments. This is no time to tough it out. And as Christine said, maybe the fentanyl patch. My sister has had stomach upset with Metformin so I think it is very common. When he gets back to his primary doctor maybe he can try something else.

Dittoing Denise ... don't let him tough it out, his body needs those resources to be going elsewhere right now. If you can help him find drivers (and yes, I know you said he loves driving), make him take the painkillers! It's often the only way to stay sane through this stuff. (And if he's getting gabapentin to work for anything, good for him ... that never did a thing for me but bad side effects ... so at least he has one thing going for him!)
((hugs))

Vicky, the Neurontin (AKA Gabapentin) is something many members have found will help with pain. It started out being prescribed for seizures and anxiety. Back in 2007 when I first went thru rads, Neurontin was starting to be prescribed to manage pain. It sounds like there has been some debate about what medical problems this medicine actually works best to control. I found it to work very well and used it for quite a while. This medicine can be used for breakthru pain when using the fentanyl patch like I mentioned previously.

Im wondering if you spoke to your father about the nasal tube or to his docs about it? I completely understand your fathers reluctance to get the PEG tube. I felt the exact same way but eventually I caved and got the PEG prior to starting rads. With your father being at his half way point, he could easily go with the nasal tube and save himself not only time but also the pain and surgery of getting the PEG tube.

Keep us posted. Best wishes!!!

I made it through rads without a feeding tube and if I remember correctly one of the easiest things to eat was pasta with butter and green peas. The smooth rounded types (for example cavaletti or orecchiette) didn’t hurt my tongue and they just glided down. Oven-baked cod and mashed root vegetables (again, with a generous amount of butter) was also one of the last things I could eat before I stopped eating real food completely. I sauteed chopped spinach (it had to be chopped or else I couldn’t swallow it) and mixed it with plain yoghurt and used it as the sauce to help the cod go down easier. I also liked dunking biscuits in tea but not any biscuit, the kind that falls apart as soon as you dunk it. I don’t know the name of them in english but if you google “Marie kex” you’ll see what I mean. However, it was absolutely impossible for me to consume the recommended amount of calories and nutrients with the very small amount of food I was eating. I basically survived on high calorie nutritional drinks and shots I got from the hospital. I think it’s the same as the ensure/boost Christine and Denise wrote about earlier. I would definitely try those out and see if your father likes them. They really helped me out a lot and eliminated the anxiety I was having about food and calories.

My dietician also told me to put a little oil (healthy oil of course) in my smoothies and soups to bump up the calorie count. But that’s something to talk to your father’s dietician or doctor about since he has high cholesterol.

When it comes to the opioids, I understand your father completely. I also love driving (it calms me) and had a hard time with the idea of sitting next to a stranger everyday to and from the hospital, not being able to drive myself. Plus I wasn’t looking forward to the side effects either. That being said, I had the fentanyl patch, lidocaine mouthwash, morphine-lidocaine gel AND liquid morphine. The gel and mouthwash helped when I was brushing my teeth but did nothing for me when it came to eating. The patch and morphine were the lifesavers there. I hated how they made me feel and I hated the cab rides to the hospital but the alternative was getting a tube and I disliked that idea even more.

If I remember correctly my doctor said I could drive if I only took the morphine and if I stopped taking it at a certain time during the day (so it would be out of my system the next morning). Maybe that’s something to ask his doctor about. If this is true, and I haven’t completely made it up in my head, then he could at least take some before meals.

Treatment 20 today! 10 more to go!! The end is in sight! Dad is in pretty good spirits. Tongue is a little swollen today. Face looks like its about to start to peel a bit. We got him some Miaderm which he has been using since before the radiation started, and it seems to have made a difference in the severity of the burn as most people say he looks great for being at this point in his treatment. Met with a different nurse yesterday who seemed more concerned about Dad's choice to not continue the chemo. She wanted to know if he was going to continue the chemo after the radiation is over. I don't know why the radiation oncologist and radiation oncology nurse would have told him it was overkill, if EVERYONE else says its not.

Hi Vicky. I was struggling with the last few radiation treatments, and was hoping to avoid the last chemo, as it was for a partial week of my last rads.
I discussed with both Oncologists.
What it boiled down to me, was a matter of statistics. These treatments were developed to work at the specified protocols. It doesn't mean that they can't succeed with one less of one or the other. But each "miss" just lessens the percentage of success. I figured, after putting up with so much, even months before the rads/chemo, why even take a chance of lessening the odds, even by a fraction?
So I pushed through to the end. And needed extra hydration and a Fentanyl patch among all the other things discussed on the forum.
Not saying every situation is the same, I didn't have much tongue swelling, and didn't have the same surgeries others had.
But my point is, I wouldn't think the completing the original protocol would be overkill.
It's a risk /reward of what that patient can complete. But I think it's probably best to try to keep Dad positive, and focus on one day at a time. All things will pass, I can't believe I'm over 2 months post treatment. You and your Dad will be there in a few months also.

Sometimes people who mean well speak out of turn. Your fathers doctors have many many more years of education behind their medical degrees than a nurse. One well meaning nurse who probably doesnt follow patients for years like the medical oncologist does shouldnt be making treatment plan comments at all. They are commenting on something that is NOT even their specialty! The doctors created the treatment plan are going by many years of medical research on many patients. They have flow charts with every imaginable situation listed. If you want to see it, ask the docs about it. I used to know how to find it but off the top of my head I just cant remember anymore. Its been years since Ive taken a look at it. In the end, the choice is the patients who is swayed by not feeling their best right now. In my (unprofessional) opinion patients should try their best to stick to the original treatment plan as much as possible. Your father does NOT want to risk a recurrence and have to endure anything else after this is completed, its just not worth it.

Went to see his surgeon in Boston today. He said Dad was looking great. He said he thought not doing the rest of the chemo was fine, too. He said it only increases the success rate by like 2% in cases such as dad's, where the lymph nodes were clear and the margins were clear. He encouraged Dad to get the fentaynl patch to get through the next few weeks. I offered to take time off from work to help him get to his treatments. Mom called her work and got some sass from her supervisor about continuing her leave (because she heard my dad was well enough to go to a car show, and thought that should mean he should be well enough for my Mom to return to work. SO frustrating.) Things are looking alright, as long as Dad can manage his pain! Everyone keep fingers, toes and eyes crossed for us!

Vicky, how I hate hearing anyone has to struggle with other things when going thru cancer themselves or for their spouse!!! My former employer was very strict about this sort of thing and at times I had to fight to be able to take time off to get treates and recover. What was the most upsetting was the third time my cancer was diagnosed and my doc told me to get my affairs in order my employer was NOT very happy with me as I had recently returned from my previous cancer recovery.

Make sure your mother understands how FMLA works. She is legally entitled to have up to 12 weeks off to care for herself or an immediate family members serious medical condition... which cancer definitely falls under! As long as she has worked there for over 12 months, has worked at least 1250 hours in the previous 12 months and theres 50 or more employees where she works are the biggest hurdles to get over to qualify for FMLA. This FMLA time off could be intermittent or continuous, whatever works best for the patient, spouse or caregivers situation. Theres a few other minor details in qualifying for FMLA so Ive included a link to get full details.

FMLA basics from US Dept of Labor

Today was dad's last day of treatment!

Hooray!!!!

Time to celebrate! I hope he feels better soon!

Hi all,

Just checking in again. He's still in lots of pain! He had an allergic reaction to something at the end of last week which caused his already blistered and sore lips and face to swell up. He just refuses to slow down and has been outside working on the cars, getting the plow truck ready for winter, mowing the lawn, etc. and probably got into something he shouldn't have. They did Benadryl for 24 hours and when they decided that wasn't doing the trick, put him on steroids. Seems to be a bit more comfortable now. He said even water hurts now, where as he had been able to drink water and eat soft foods throughout his treatment. They're going to check in with him on Monday, and he has a follow up with his radiation nurse practitioner next Thursday.

The radiation oncologist said it would probably be a few weeks before he turns the corner and starts noticing he's not feeling quite so bad. Anyone remember how long they took pain medications after ending radiation?

I would guess I kept using mine for about 3 or 4 months past finishing rads. Recovery can take a long time to rebuild patients bodies who have been thru so much. Unfortunately none of us are ever able to get well as fast as we think we should.

Its usually 2 - 3 weeks post rads when patients suddenly notice they actually feel almost like their former selves. But, recovery can be full of ups and downs with a few setbacks as well. As long as your father is able to push himself to take in at least 2500 calories and 48-64 oz of water daily he should be ok to slowly start getting back into his regular routine. We all need a reason to get up in the morning! Some patients need routine while others need to see their progress and others cant stand to sit still for more than they absolutely have to., Hopefully the work your father does is not too strenuous and does not involve being around alot of different people. Most patients have their resistance to colds, flu, germs, etc lowered for quite some time after finishing rads/chemo. It can take patients years until their body is fullhy recovered and their bloodwork goes back to their pre-cancer normal levels. Recovery is something nobody likes... especially the setbacks after thinking "hey everything has been pretty good" ! It just take more time than any of us like.

Keep up the higher caloric intake and water for at the very least the first post yr end of rads celebration.

Dad's work doesn't put him in contact with a lot of folks, but he works very closely with one person. He's a caregiver for a developmentally disabled adult who lives with him and my mom (and me for the time being). I'm glad the allergic reaction seems to be under control now. He seems like he's feeling a little better, but is definitely wanting to eat regular foods and to talk without pain. Also, glad to know that he's progressing about like everyone else.