My father has tongue cancer....advice please

longtermsurvivor said:

Hi Chelsea
Welcome to the board. I'm sorry you, and especially your father have found yourself in this situation. It is going to be difficult, but not impossible to navigate. I have had several throat cancers, have been through treatment for Base of Tongue cancer, and am currently over halfway through radiation for a cancer which has arisen on my soft palate. So I've been most places your father is about to go.

Having said that, no two people experience this the same. I can relate to you what my BOT cancer treatment was like, but others will tell you of different experiences. I had 35 sessions of radiation for BOT cancer in 1998, without chemo. For me, it was not at all hard to do. I had no real pain issues, no significant eating issues outside of low apetite, and was able to work full time during and after treatment. I required no outside help.

This cancer is a little different. Having had prior radiation, it would have taken a miracle for me to not have some trouble with the current treatment. I had Chemotherapy, using cisplatin/taxotere for three cycles spaced at 3 week intervals. Outside of some nausea, that was not hard for me to do. Significantly, like your father, I had been having swallowing problems and had lost almsot 30 lbs prior to chemo. My responsse to chemo was so good I was able to eat again, and gained back almost all of that weight prior to starting radiation.

So I've not needed a feeding tube this time either. I'm now over halfway through this round of 34 radiation sessions, and although I am very tired, and have to take an occasional pain pill, I'm otherwise doing very well. My wife has taken time off to help me with this treatment, but honestly, although i appreciate her help, I could manage without it. My weight is stable, I'm not having swallowing pain, although I'm pretty much on liquids. My pain is very manageable.

That's my story. At least my two situations, granted without significant complications, have been doable without anything like full-time help. You will hear from others that haven't been as lucky.

Have your father register at this site and participate also. It will help him.


Pat

You'll just need to wait and see.
I had pretty much the same diagnosis last March. Surgery, then rad (35 treatments) and chemo three times at even intervals during the rad. If I were you, I wouldn't even speculate on what to expect until you meet with the doc and find out the course of treatment he comes up with. For me, the radiation was hell and I was extremely glad to get the peg tube as swallowing just hurt too much. My docs (and I'm sure your dad's) will do everthing they can to control the pain. I went from miracle mouthwash (you'll learn about this) all the way to taking liquid morphine, which helped tremendously. So don't fret about the pain, it will be dealt with. Chemo for me was nothing. I never got the least bit nauseated and never took any of the nausea medicine that they prescribed for me. It just zapped me of energy. You will just need to take one day at a time and trust in the doctors and prayer (if you are so inclined - it worked for me). It is absolutely tolerable, doable and will be successful. I too would encourage your dad to get involved here. I didn't until just recently, but it has been great finding other people that have shared the same experiences.
Sooner

Chelsea
Hello Chelsea, I had about the same diagnosis as your dad. BaseOfTongue cancer with travel to lympph nodes on one side. I had 35 radiation treatments and 3 infusions of a chemo drug called Cisplatin. I lived alone. During treatment I had help on a few occasions, but drove myself to each radiation session, and the infusions.

I'm a year and a half out of treatment, and it doesn't seem so bad now. Wasn't fun, but I had the feeding tube, no mouth sores, and was able to swallow throughout. I probably could have eaten, but the radiation takes away the taste bud and saliva function for a while, so I didn't feel like eating squat.

Here is a link to a wealth of information compiled from this board by a survivor named Sweetblood. It's a short cut to about anything you want to know.

SuperThread

Your dad can do it. You can do it.

best, Hal

Pam M said:

Another Base of Tongue Survivor
Hi Chelsea - hoping for the best for you and your dad. For me, this time (after I found out I had cancer and before treatment started) was very stressful. The pain varies person to person. I think the majority of us get a feeding tube at some point. I hated getting it, but am very glad I did. On the other hand, some people here have been able to make it through treatment without the tube, and some were even able to eat some solid food the entire time (serious minority). My docs "hooked me up" with meds whenever (and sometimes in case) the need arose. I mean, as soon as an issue came up, a prescription was sent to the pharmacy, if needed. Don't be afraid to call the doctor. And even if he can wait or "tough it out", be sure he lets his docs know everything that's going on. A lot of us here aren't diagnosed until our cancer is considered stage four - if that's what your dad's diagnosis is, please don't despair. I really thought that "Stage Four" meant you might live, but would probably die - UNTIL I came to this site.

I had three rounds of induction chemo (three chemo drugs given over a period of nine weeks), then chemo radiation (one weekly chemo infusion during seven weeks of radiation). I did have some bad mouth sores, but I can honestly say that if your dad has made it through tonsillectomy, he can handle mouth sores. As always - water, water, water. Keep us posted.

Base of tongue survivor
Chelsea,
I am sorry for what you and your dad are about to go through. This is a very rough treatment to go through. But it can be done! I was diagnosed in 2006 with BOT and it had metastized to 1 lymph node. And still have effects from the radiation. But I am here! To answer some of your questions from my experience--I had 36 radiation treatments and 2 rounds of chemo. The dr told me that I would get pretty sick about the 20th radiation treatment. I was VERY sick from the first day. I had very bad nausea and vomiting. The dr insisted I try the new fangled med Zophran for that--it did nothing. Good ol' phenegran was my best bet. But didn't really help alot. It got to the point where I just kept a bucket with me at all times. I had huge sores on the inside of my mouth and I ate absolutely nothing for months. It was a big deal if I ate a half container of yogurt. I did not get a feeding tube. But I had a pic line and was given "hyperal" also known as "tpn". All that did was give me the vitamins and minerals needed to keep me alive. I would get a shot of dilaudid right in my pic line about every 2-4 hours. To this day, I still have trouble eating. I have to take a drink of water with every bite of food to help get it down. I still suffer from sore coming and going on my tongue, due to scar tissue because the radiation burned me so bad. I hope this doesn't discourage you. Everyone is different. It is a very tough treatment but it can be done. Oh I would also use "BMX cocktail" (benadryl, maalox & lidocaine). I would often use this before I ate. It would help numb my mouth some so eating wouldn't be quite as painful. I also used xylocaine gel. I wish you and your father the best. Tell him to keep a positive attitude and know it can be beat!!

tongue tumor survivor
Hi Chelsea. There are good comments in this string.My tumor was dime sized tumor at base of tongue. It was removed with robotic surgery using a Da Vinci machine along with 38 lymph nodes on left side of my neck [which is still sore 10 months later].One node had cancer. Because I was able to have surgery, the docs were able to tailor a specific radiation treatment of 33 sessions over 6 1/2 weeks for me [stronger on left side, weaker on right side]. The treatment starts 4 to 6 weeks after surgery. I was scheduled for 3 cisplatin chemos during radiation on 06/01/2011, 06/23 and 07/15 [1st day, middle, and last day. Only had 2 chemos as blood counts dropped too low between 1st and middle. Docs only wanted to give chemo during the radiation. I had a gtube for stomach feeding installed after surgery and before treatment just in case. They probably should have put the gtube in when I had the throat surgery. I definitely needed the gtube as swallowing became too painful after several weeks. I started eating very simple, small portions about 4 weeks after treatment. I lost 50 lbs while I needed to lose 40. I am back wearing pants from college days before I started drinking beer. The radiation will burn inside and outside the neck. A nurse suggested aquafor cream which worked very well for me. I liked it better than the radiogel [sp?] which the hospital gave to me. For the radiation, a plastic mesh mask was fitted to my head and shoulders. This is done to keep the head in the same constant position. i freaked out the first time it was put on as the technician put it on too quickly. The mask can be claustophobic. I worked with the techs to place it better and I learned how to breathe easier. The gargling with a water mixed with salt and baking soda helped me a lot. Ask the doctors and nurses a lot of questions. At times the nurses had more information and time. For pain, I had oxycodin [I think]. One is plain pain med while another is pain med plus tylenol. I crushed the pills into powder, put it in water and then poured it into my gtube. For the nausea caused by chemo, take the anti nausea meds when the chemo is done not when he feels sick later. I made that mistake on my first chemo.
If he goes out in the sun in the next several months or even longer, he will need sometime of neck covering as his neck skin will be sensitive to further burning from the sun. I forgot to wear it 5 months after treatment and played 18 holes of golf. Neck got burned. I cannot remember where my wife go the neck coverings that I use.
Good luck with your dad. He needs to keep a positive attitude as you do. Have friends help you vent some of your emotions which you will have. You need to take care of yourself too. Keep posting when you have additional questions. Prayers are with your dad. Best, Homer age 56 with many years left in me