Hi everyone. A family member was diagnosed with tongue cancer and has started radiation for 35 days and has had her first chemo a few days ago with two more to follow. The cancer was at the back of her tongue. I would like to talk with someone that has the same type of cancer. Thanks.

Hey there there are a few of us here... Were in Canada are you? welcome

Most likely she was Dx'ed with SCC with a Primary at what's called Base of Tongue. Most likely she will receive a chemo called Cisplatin. She may even have had nodal involvement and if this is the case she will likely test positive for the presence of HPV. All of this is typical and if this is the case her prognosis is very good although her Tx will be difficult. Do encourage her to join this site as it will be invaluable starting now.

My diagnosis as well. Very close to 2 years post treatment and getting very comfortable with my "new normal". It ain't easy but it IS doable. You've stumbled onto a great place for info, advice and encouragement.

Welcome to OCF! You will find tons of info and support here. Please encourage your relative to join as well. An informed patient is a smart patient.

It all started with a lump on her neck. I believe that cisplatin is the chemo she is getting. she already had one treatment August 12 and started the radiation at the same time. Her next chemo will be September 3. So far no major side effects. She is 60 and was a smoker but quite years ago. We are in Vancouver BC., Canada. Any helpful hints to help her along this early stage will be helpful. she needs to get cream to put on her neck....What brand did you all use?

Sorry to hear, but welcome. Aquaphor was recommended, and another time Ceptaphil also. As far as washing, I used ceptaphil liquid soap, aquaohor bath liquid, and heard unscented Dove bath liquid. I never scrubbed my neck either, and had no problems, but everyone's skin is dufferent. The last to weeks, up to two or three weeks post treatmnt are the worst. Most don't start feeling the radiation side effects into 10-14 days, then the redness starts, dry desquamification, and then wet desquamifucation around the last two weeks, and only after a few days from chemo infusion, which are more acute, and subside more quickly once treatment is stopped, compared to long term effects from radiation. Good luck.

Aquaphor works great at first while the sunburn is red. If she develops open sores then try silver silvadene; the doctor can prescribe it. It works well for many. don

She goes in on Monday for PEG. How many of you chose not to have Peg or did you have a choice.? They said she might not need it but it's there just in case. I don't think they gave her a choice in the matter...for those of you that had PEG, Did you have to use it?

I did not have a PEG, did not want one and was not forced to get one, although there was plenty of pressure to get one just in case.

It seems it is really necessary when one can no longer drink fluids, water and liquid nutrition. If you can get down liquid then to me a PEG is not critical as one can remain hydrated and nourished with liquids.

Later, you go back to eat soft foods and also mash up food in a baby grinder like I did. Soon enough you are going again.

I was encouraged not to have the tube by my team. They said that patients without the tube tended to do better post treatment. If I had needed one I was told it would probably be a 2 day wait. My worst time was 2 to 3 weeks post treatment and was mostly due to pain on the side of my tongue.

I resisted getting one until week 6. By then I was a mess. Lost 25 lbs, pain was horrible, and I was metally lost. Drinking was nearly impossible. I managed only a sip once or twice a day. For the next 4 weeks the peg was a life line. However, Getting one requires surgery and it was one tough, long, day. I was 152 lbs before treatment. I was down to 132 when I got the PEG. It is easier to get it before you need it. Even with the peg feeding is not easy. I threw up everyday, Ouch. However getting water in was OK. My advive is get it and don't use it. Then use it as much as you can, then stop using it as soon as you can, the get it out as soon as you can. I can tell you that after 5 weeks, I was sick of those littly cans.

Richard got his PEG before his treatment started. He did not start using it till midway through the treatment. He was able to keep up on the recommended nutrition (3000 cal) and proper hydration (64 oz plus). He just finished up treatment and is still tube dependent, but planning to wean off as soon as he can. He lost about 20 pounds, but the Oncologist says that now he is at an ideal weight for his height, 214 lbs at 6'3". I agree with the above, better to have it and not use it, than to have to fix things, when you are in the midst of treatment and unable to swallow and in a lot of pain.
Barbara (CG)

Depends on the persons current heath status, weight, and possible need due to surgery, radiation or chemoradiation compromising eating, swelling ability. I had on put in without my knowledge or signed for it while hospitalized, and in ICU, but anyway, it was necessary, and lost 110lbs just from chemo, so one never knows what will happen. Anyway, one was planned to be place before chemoradiation, but unplanned came first. I chose to get one for my recurrence, as suggested, being my Heath, weight, and eating ability was compromised, and still have it 3.9 years later, but do not use now, but did during my last treatmnt in October through December, and holding on just in case.

Hi Shelby,

My team thought I could make it without a PEG but I hit the wall hard and was unable to eat the last couple of weeks of treatment and I lost a lot of weight. I rang the bell and two hours later was having PEG put in. Other than water, I took nothing by mouth for the next 4 weeks of recovery and relied on the PEG. As much as I didn't want one, I'm glad I had it. I started eating a month post Tx and didn't use it at all since. It was removed 8-6.

In retrospect I probably should have had one put in sooner but I fought it tooth and nail until I had no choice. Even if she never uses it, it's a good insurance policy.

Positive thoughts and prayers

"T"

I chose not to have a PEG. Wouldn't change a thing.

I had PEG placed prior to treatment and it was a life saver. I had no desire to eat a big part of treatment and no ability to for about a month. I don't know how people get through treatment without it. I was unable to drink anything but water for about 4 weeks and that was extremely painful. With the peg I just poured my water and nutrients in . My treatment ended the end of May and I had my PEG removed yesterday, it was a very happy day for me.

Hi there being in Vancouver you are likely being treated at a cancer hospital. Chances are way will insist one be put in. She can resist this but being that she s 60 It may be better for her to have one to help when things get painful. It really depends on her pain tolerance, and how difficult you think it will be to get her to eat. She will have to have nutrition. I had one placed as my hospital insisted, but I couldn't use it so I muddled though without and was okay but I forced myself to take my nutrition even when things were bad. If she can't do that then a peg may be a good idea particularly if she's small to average sized.
Regardless of a peg or not she need to remember to swallow all the time. best of luck.

Thanks for all the responses. She is having the Peg put in on Monday. After chemo and 5 treatments of radiation she already is starting to have side affects. Right now it's really bad stomach problems so she had to get a prescription from the doctor, not sure what it was. She tried taking all sorts of antacids but nothing was working. I heard that the first few days after the peg surgery is tough....

It takes a week to recover from the PEG surgery. Yes the first few days are the worst with daily improvements from day 3 to day 7. This again is where hydration and food are very important. I did not feel like eating the week of recovery and lost 8 pounds. Keep that in mind. Also time is needed to get used to carrying the tube around. My wife and I without knowing better taped the tube to my stomach to keep it stable. A week later a nurse gave me a stick on catheterization stabilizer to hold it in place which was great. Make sure to ask for some. You need to change out once a week and change placement to protect the skin underneath. Also tracheotomy drainage gauze helps to protect the area around the tube until seepage stops.

I had it put in on a Wednesday and I was sore for a couple of days but it really wasn't too bad at all. I was using it by the next day.

The nutritionist prescribed Osmolite 1.5. By itself it was a little rough on my stomach at first but I started adding water to thin it out and that helped. The key was adjusting the drip on the gravity bag. Too fast and I tossed my cookies. Slow is better. Some folks used a pump that allowed them to feed while sleeping. Also, sitting upright during and for about 30 minutes after feeding helped as well. It also was great to get extra hydration. Hang a bag of water and bingo!

"T"

Kris has had a PEG placed on 2 separate occasions now. A simple day stay surgery. He had minimal pain and declined any pain meds . Really this is not a biggie.
We just used a syringe and pushed the nutrition and fluids in. No problems.
Tammy

After my PEG surgery was a little rough on me, for about a week it was very painful until I saw the surgeon and he realized it was cinched to tight, he loosened and I felt immediate relief and stood up straight for the first time in a week. Then it took about another week to heal from it being to tight and pulling my stomach muscles. After that is was no biggie, I got to where I didn't even notice the thing anymore unless I was looking at it. The lesson here is if it hurts very bad then you probably need to have it looked at because something might be off. BE sure to keep it clean and follow your instructions for cleaning daily.

Has anyone considered the nasal tube????

Being a nurse I have dealt with both and placed many nasogatric tubes, both the regular NG and the dubhoff. The PEG was by far the better choice for me. With the NG tube it is held in place with tape, you have a much greater chance of it slipping out of place and if it does it can slip to the point the end of the tube is in the lungs instead of the stomach meaning everything you put in that tube goes into the lungs, checking placement before each feeding can help eliminate this but the risk is still there and it is next to impossible to check placement of a dubhoff without a X-ray. With the PEG once it is in place it rarely moves unless it is pulled with some force and if that happens in most cases it is just going to pop all the way out. The NG tube is also more obstructive IMO, you will have a tube hanging out of your nose and being that I still wanted to go to work and get out and do things it wasn't for me. With the NG you also have a tube running down the back of your throat which I have been told can be somewhat annoying. After the initial soreness wore off from the PEG it was hardly noticed and it was easily hidden under a shirt and tucked into my bra.
IMO the NG tube is something for a short interval of time if nutrition or suction is needed fairly quick. The NG tube was not even offered to me, it wasn't a thought at all. I have never heard of it offered as a solution for nutrition other than a few short weeks.

To clarify further, and I put some perspective on the NG (tube running from the nose to the stomach) vs PEG tube. I have not heard of the NG tube being something that is planned, The doctor knowing that eating is going to be an issue down the road saying well we will wait until you have that issue then put a NG tube in. I think it is used after treatment is underway and tried without the PEG and it becomes such an issue nutrition has to be given another way and perhaps that person is to debilitated to undergo the PEG surgery. The PEG is a planned procedure, not a quick fix for a problem that was hopefully going to be avoided. I think that speaks to the preferred method.
But the NG tube is something that is sometimes needed and can for sure be a life saver. A positive about the NG tube is no surgery is needed. But I would definitely rather have a small outpatient surgery for the PEG than someone running a tube in my nose, down my throat, and into my stomach while I watched, I do not like that idea at all.

The expected time for use, is also a consideration, if not already mentioned. A NG tube is usually paced for use less than 6 weeks, anything more a PEG is preferred, but surgery is also a consideration if healthy enough, but they can also place a PEG non-surgically by fluorence radiologically.

I had the nasal tube put in post Tx in less than a minte; used it for 2 weeks, took showers with it; the tape issue is easily fortified with a safety pin pinned to a shirt; no infection worries, no cleaning around the wound because well there's no surgery or wound to worry about and I was allowed to pull it out and discard it at home myself. My biggest complement is I never had any post Tx or post nasal tube swallowing issues.

My team recommended not getting a PEG before treatment. They felt that its better for swallowing purposes to try to stick through treatment and take all nutrition by mouth. I am also young and without any other medical issues which may have influenced their decision. I lost a lot of weight through treatment, but haven't really had any swallowing issues.

I have tpo disagree about the Peg. I didn't have one either but it didn't take long before I was forced into one . Without it I would have died moons ago. Now I live only one the Peg and depend on it for meds and feedings of Jevity. Now I am left without a lower jawbone, no teeth not much of a tongue but still put my 8 hrs of work in in my yard and around my house. I had tongue cancer as well as in my bone. No teeth, and a lower jaw that looks like a shrunken piece of ice cream in 90 degree sunshine. From 200 lbs down to close to 100 lbs. Keep the positive outlook and you will make it thru this stuff. I am starting my 7th year as of August 7th.

I foergot to add that I can swallow as good as anyone and use the Syringes to put water and juices in my mouth to swallow. They make your mouth much gooier but the taste is great for about 1 minute. Well worth it tho.

Had the PEG put in and doing okay. Not too much pain and no nasea yet but has really back acid reflex. It's so bad she had to go back to the Dr. and ask for another prescription... Did anyone else have this? She had this a few days before the PEG was put in. I don't know if this is a symptom from the Chemo and Radiation or if it was a problem she had before...

I have it. It can be from chemo, radiation, medication, vitamins, acidic foods, and vomiting, etc. and have more medications, Aciphex, to take for it. Sleeping on an incline may help prevent the acids backing up at night.

My sister was doing okay up until yesterday. She has mucositis, a really sore raw spot on the ride side of roof of her mouth. It's about the size of a quarter and the Dr said there is not much they can do and it will only get worse. They gave her mouthwash that was suppose to numb it but it doesn't work. She can't eat anymore and has to use the feeding tube earlier than she thought. She really thought that she wouldn't need the feeding tube until much later if at all . She was doing so well and now the symptoms are starting to happen. She is also loosing her hair.....her second chemo is suppose to be on September 3rd.

i do but i have only done 14 radiation treatments

She has had 13 radiation treatments

we are on the same schedual. my second chemo is sept 3rd also. i am very sorry that she has mucostis. I have been gargling with carafate and caphosol 4 times a day sice day 3

also i read that gargling alot with spring water / 1 guart and 1 tablespoon baking soda and teaspon salt. is she do any health food store stuff?

I think she started to go to the health food store to make smoothies but now she is having a hard time even sipping water....She was doing so well I think she is just surprised symptoms are starting this early....I saw her Sunday and she was so positive but this has hit her hard....I think she was surprised at the hair loss because she was told with this type of chemo that hair loss was rare......

What type of chemo is she getting?




PS....Please add a signature so its easier for us to help you.

I have sent you a private message (PM) with a link which has detailed instructions on how to add the signature.

Thank you!

Hey there... unfortunately this is very normal. At this point she may need some pain meds. It's best if she takes the water or fluids lukewarm that way it doesn't startle her already sensitive mouth. Definitely the baking soda rinses will help not with pain but with healing (she can also flatten club soda and actually drink it... it has healing properties - much like the baking soda mixture) I would eat and drink what I could then rinse and sleep - a pain med prior to eating (usually 15 minutes - 30 before hand) then maybe magic mouthwash and chug or eat what she can.

best of luck... it is not fun. I am assuming she is at week three almost?

She is on Cisplatin. I will try to do a signature....thanks.

Thanks Cheryl for the great info. Yes she started first day of Chemo September 12 and also the radiation same day. her next chemo is September 3 and she had to do radiation for I think 6 weeks. I'm going to try and get the signature done up....She is suppose to do 3 Chemo treatments.

What's the best way to take pills if you can't swallow? I guess just crush them up and put them in a liquid?

You need to be very careful of the type of pills you crush and ingest. Some are time release so you need to keep those intact; otherwise they are no longer time-release.

Oh good point. I never thought of that. She's had 14 radiation treatments and the lump on her neck is getting bigger! Shouldn't it be getting smaller??

Did anyone have hair loss from the chemo cisplatin? My sister is losing her hair already after one chemo treatment and she was told hair loss is rare on this type of chemo...

No hair loss from Cisplatin for me. It is a rare one.

"T"

Losing hair is normal from radiation not the chemo - I lost it all below my ears across the back of my head and it thinned on my left side up to the crown - that side not only got rads on my neck but my tongue. It grew back - I finished in may & by August I had enough hair to put extensions in. yes be careful with the pills. If it is going into the tube ask if its available in liquid form. Hugs...

I lost all my hair during chemo. Not sure if it was the taxotere, cisplatin, or 5FU but one of them sure made it all fall out.

Radiation will cause hair loss in the back of the head where it exits. Cisplatin normally does not cause hair loss. I expected to lose mine from it so I cut my long hair very short. I got a pleasant surprise when I only had a small round bald spot about the size of a quarter where the radiation exited the back of my head near the base of my skull.

I had the same TPF IC as Don, and lost all my head, and body hair, fingernails and toenails too, and did not have radiation with it. It's was probably more the Taxotere, and 5-FU, I believe, but will never know. Still, cisplatin can cause hair loss, not that it will. Radiation alone made the hair come out in the radiated field. I didn't have to shave for months, then I had Taxotere, with Erbitux, another time, with radiaion, and hair thinned again, coming out in the shower escoecuakly. Again, I think it was the Taxotere on the top. Radiation slightly on the side. My hair is thinner now, less thick, but my hair stylist knows how to cut it. I'm stil lucky being 52 with head hair lol. Good luck.

My MO has warned me that hair loss is a possibility with Cisplatin. Here's a link to info about Cisplatin side effects that he gave me -- it says 10-29% of people will have hair loss:

http://www.chemoorders.com/Chemo-Drug-Defs/Cisplatin.html

Yes cisplatin doesn't often cause hair loss - you must have had induction chemo - taxotere is the culprit.

It causes hair loss in more than 10 out of 100 patients, but fewer than 30 out of 100. It is not considered rare.

I didn't read this chemo fact sheet, but did with others on cisplatin, which I posted before, same reason, which indicated hair loss to be an "less common" side effect, I believe. That's not rare nor common.

My sister was sucking on candies and now everything stings because of her sore mouth. Any suggestions on types or brands of candy she can try?

Cheryl,
That makes sense based on what the general responses are to hair loss. Nearly all keep hair during chemo-radiation as do the the platinum only chemo patients. It certainly does highlight the taxotere or maybe the 5-FU as the culprit.

I'd not be surprised if a poll of induction TPF chemo patients returns a much higher "lost my hair" response. don

After one Chemo and 15 Radiation treatments the lump on the side of my sisters neck is getting bigger, not smaller...Shouldn't this lump be getting smaller by now?

It should be shrinking what are they saying about it?

It is not unusual for swelling to take place temporarily. Make sure your Doctor is aware of your concern next time you go in. There are several treatments left I am assuming. The fourth week is when mine began noticeable shrinking.

She had chemo yesterday and it was a little smaller. I think the Doctor said that the radiation causes swelling just like James said. I guess she thought it would start shrinking right away.

Hi Shelby,

I've had:

Cisplatin (3 infusions, 3 weeks apart) with 8 weeks of radiation. No hair loss, but since I had a BoT primary and 4 involved Lymph nodes (both sides of throat), I did lose my full beard - but not my mustache!

The beard fell out, but only below a line from the corner of my mouth to the bottom of my earlobes and extended to the other corner of my mouth.

And all of that fell out within less than 45 minutes while I had my cat on my lap. I only noticed it when I got up to go the the bathroom and saw my beard on my shirt, and not on my face where I'd have preferred it to be.

When I had my first recurrence, I got treated with Taxol/Carboplatin. I lost my hair - all of it - eyebrows, mustache, chest, and everywhere else.

All of that came back rather quickly after my chemo ended. I don't know of anyone who has not had their hair return, and it usually comes back better than it was before it fell out.

I have used a pill-form of Chemo that goes by the name "Xeloda," which is enzymatically converted to 5-fluorouracil in the tumor, where it inhibits DNA synthesis and slows growth of tumor tissue. (according to wikipedia.) I did not lose any hair during that treatment, although I was told it might happen.

In fact, I'm currently treating another recurrence with Xeloda, I'm in the second week of my third (of four) cycle, and have one more to go before my next PET scan. I do get a bit of hearing loss with each chemo regime, but no nausea or hair loss.

Hope this info helps.

Bart

Sister had chemo September 3 and she's wondering how long the nausea lasts. She said the mess don't seem to be working. I don't think she has started using the peg yet....

Usually its ivwr in a week but some people are sick all the way through bring it to the attention of her medical oncologist. Best of luck

Hi

So my sister had all her treatment and it's been almost 5 months and the lump on her neck is still there. They haven't given her a pet scan because they said it was too soon so they said if it's still there in May they will operate to take it out. She was offered a needle biopsy to see if there was still cancer there but then she read on the internet that it's not a good idea because if there is cancer a needle biopsy would make it spread. for those of you that had a lump on your neck, how long after treatment did it go away?

You can't get a meaningful answer that way, people's reactions to cancer and it's various treatment modes in unbelievably variable.

Now that that's been said, tell her to get the needle biopsy, and do so ASAP. A fine needle biopsy could save her life, and will NOT spread her cancer.

Most people who've had radiation have a 3 month scan to determine whether they've gotten it all or if there are areas of concern that require close monitoring. It is not too early to have a PET or CT though the PET sometimes gives you false positives. However an experienced Radiologist can usually identify areas that may be cancer. I personally would not wait. I would not want them to do a needle biopsy (I agree that cancer can sometimes crawl along the path of the needle - I would want a scan ASAP. tongue cancer can be persistent and is harder to kill than HPV related BOT cancer and since she didn't have surgery I would be concerned with every day that node is there. Has it gotten larger?
Best of luck.

no it's a little smaller...

Then maybe it's just a reactive node. It still wouldn't hurt to have a scan... but cancer can really only be detected by biopsy. Though a needle biopsy still concerns me. hugs

The spread of cancer, seeding, via a FNAB is rare. In rarity, it's occurrence were with larger core needle biopsy in the breast, and have read some in the thyroid, but it's widely used, and considered safe, and an alternative to a surgical biopsy, which has its risk too. Some say, doctors that is, that a PET/CT is 90% accurate at 6-8 weeks, earlier has more false positives, 3 months or 12 weeks is when most have a scan is more accurate, 4 months is more accurate, and at 12 months, it's 100%. The is no general consensus when any period scanning should be done post treatment, in absence of any suspicion, and is only recommended for certain T3, T4 disease only, per NCCN guidelines in the oropharynx, larynx, etc. none in oral cancer, but each doctor, hospital may have different procedures.

My sister went ahead and had the needle biopsy because the lump was still on her neck though it had shrunk some. The cancer Dr. told her to wait because it was still shrinking and it could go away on it's own. The Surgeon told her that she should get it taken out asap so she chose to do the surgery. She had it done April 10 (on her birthday) and she was able to go home the next day. They didn't put a drain in her neck and they told her that her arm would be sore but it isn't. She has some numbness in her tongue and lip and the welling is all under her chin. She doesn't get the results of the biopsy until April 28.

Glad she followed through... Better safe than sorry hopefully - she will get the results before then..