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#196853 - 08/02/18 02:32 AM Re: Update [Re: Vicky1]  
Joined: Mar 2018
Posts: 41
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
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Joined: Mar 2018
Posts: 41
Maine
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?


My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
#196855 - 08/02/18 09:35 AM Re: Update [Re: Vicky1]  
Joined: Oct 2017
Posts: 8
Michael Young Offline
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Michael Young  Offline
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Joined: Oct 2017
Posts: 8
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


Tongue SCC T3N2M0
#196872 - 08/06/18 10:27 PM Re: Update [Re: Vicky1]  
Joined: Apr 2018
Posts: 43
DeniseG Offline
Contributing Member (25+ posts)
DeniseG  Offline
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Joined: Apr 2018
Posts: 43
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!


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 5/18
#196877 - 08/08/18 03:51 AM Re: Update [Re: Vicky1]  
Joined: Mar 2018
Posts: 41
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 41
Maine
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.

Last edited by Vicky1; 08/08/18 03:57 AM.

My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
#196880 - 08/08/18 04:13 PM Re: Update [Re: Vicky1]  
Joined: Jun 2007
Posts: 10,148
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,148
PA
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.




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#196891 - 08/10/18 03:20 AM Re: Update [Re: ChristineB]  
Joined: Mar 2018
Posts: 41
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 41
Maine
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. smile

Last edited by Vicky1; 08/10/18 03:51 AM.

My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
#196893 - 08/10/18 06:27 AM Re: Update [Re: Vicky1]  
Joined: Apr 2018
Posts: 43
DeniseG Offline
Contributing Member (25+ posts)
DeniseG  Offline
Contributing Member (25+ posts)

Joined: Apr 2018
Posts: 43
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.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 5/18
#196894 - 08/10/18 03:45 PM Re: Update [Re: Vicky1]  
Joined: Jun 2013
Posts: 239
KristenS Online content
Gold Member (200+ posts)
KristenS  Online Content
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 239
alabama
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))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
#196897 - 08/10/18 09:25 PM Re: Update [Re: Vicky1]  
Joined: Jun 2007
Posts: 10,148
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,148
PA
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!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#196898 - 08/10/18 09:42 PM Re: Update [Re: Vicky1]  
Joined: Aug 2017
Posts: 9
GG87 Offline
Member
GG87  Offline
Member

Joined: Aug 2017
Posts: 9
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.


Stage 2, T2N0M0 (lateral border of tongue)
29 years old when diagnosed (diagnosed with lichen planus at 27)

July 2017: diagnosed
8 aug 2017: partial glossectomy
24 aug 2017: another partial glossectomy + neck dissection (27 nodes removed)
3 oct 2017: rads start (the first of 25)
14-17 nov 2017: PDR brachytherapy boost
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