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New & Scared, Help Please

boogie
Posts: 2
Joined: Aug 2007

Hi: First of all, I want to say that I am soooo glad that I found this site. Its sucks to be alone w/this. Anyhow, I had tongue cancer. I had surgery 5/30, removed about 1/3 of the tongue and neck dissection. I have having abou 30 treatments of radiation and 3 chemo, rad everyday and chemo every 21 days. The chemo is cisplatin. Anyhow, I guess I am about 3 weeks into it and I am beginning to have a sore mouth. So far just one sore in my mouth in the crease of my right jaw. Ouch!! Now my throat is beginning to get sore. Any chance that I will not need a feeding tube, is that possible. They are threatening it to me, because I am kinda small to begin with. I am also petrified of the chemo. Had one treatment, was sick, but not too bad. My next is on 8/8. I'm just scared. I know I will get through it, but i'm projecting what's going to happen to me and freaking myself out. Thanks for listening and I hope someone can write me back. Thanks.

hipwr1
Posts: 8
Joined: Jun 2007

First, sorry to hear about your diagnosis and situation. You sound like you are approaching it very positively, and that is very, very important. I finished 33 rad. and 7 chemo(Erbitux) and Ethyol injections on June 29th. You WILL need a feeding tube!! If for no other reason, to take in clear fluids. The radiation severely dehydrates you, and that will put you in the hospital and interrupt you treatments. If nothing else, and if you have a port, get on a hydration program with your oncology dept. I would strongly recommend a feeding tube, it is the only thing that saved my life. I started my ordeal @ 204# and dropped 42# total, and that was using a feeding tube with Ensure and Jevity. I did not take anything by mouth for approx. 5 weeks, and prior to that was very limited, due to the same soreness that you are experiencing. I don't mean to paint a bad picture, but everything my radiologist and oncologist said was going to happen, happened. I thought I could be the exception, but I wasn't. In fact I ended up in the hospital 1 week after my last radiation treatment for 2 days with a septic infection and severe dehydration from the severity of the last 8 "boost burns" of radiation. I am only telling you this because I only had the neck dissection surgery and tonsils and tonsil beds removed and very little of the base of my tongue removed.
When your salivary glands leave you and your taste goes bye,bye - you will want the feeding tube, just for nourishment. It will also give you another avenue to stay healthy to fight all of the other side effects that are going to come your way. Good Luck and keep swinging!! The positive attitude is the most important. Don't get hung up on what happened yesterday - look towards tomorrow and the next day, and how you can attack them.

TereB
Posts: 288
Joined: May 2003

Hi boogie,

I am sorry you are going through this but you are not alone. Treatment may not be easy but remember you are going to make it. Some people get sores in their mouths, others don't. Check with your oncologist and see if there is something that can help you with that. It is hard to tell whether you will need a feeding tube or not, I guess each person is different. If you do, is to help with nutrition which is very important. It is normal to be scared, we all go through the same thing. You are already doing very well with your attitude, knowing you are going to get though the whole thing, that counts for a lot.

Just take it one day at a time, don't start worrying about next treatment yet. You will be surprised to find some inner strength that you didn't know you had. Check the survivors chat room here, people there are very nice and since many have gone though the same thing chemo, rad, feeding tube, etc. they can give you information based on their own experience.

I know this is hard and I will keep you in my prayers.
God Bless,
TereB

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Congratulations, boogie, on your survivorship! The diagnosis and surgery were the first steps in the process, but you are well on your way, and it sounds as though you have a great attitude, which is critical to long term success!

It sounds as though we are in a similar boat: I had half of my tongue replaced by tissue and nerves from my arm, and had 33 rads and chemo treatments (at the same time as rads) about every two weeks or so.

Please be advised first that while all cancer survivors share a number of experiences and emotions that others can simply not comprehend, which makes us a unique club, if you will, it is equally true that, like the proverbial snowflakes, no two cancer survivors have exactly the same experience.

So, what I tell you, what anyone tells you, may or may not be true for you. There are just so many variables involved, including the most important one: YOU.

For example, I did not experience sores inside my mouth, at least none that I can remember now as a problem. On the other hand, I had sputem practically gushing...I could set my alarm clock for every two hours at night for awhile there, as I was wakened by the need to gargle and clear it out.

I can tell you, regarding your situation, that my doctors, all of them, stressed hygiene and supplied oral hygiene products specifically designed for those of us with traumatic events in our head and neck area, and particularly to resolve dehydration issues.

I STILL use biotene toothpaste and mouthwash, which are designed to reduce bacteria and irritation resulting from dry mouth, for example. I also use a water pic-like product to get to those hard-to-reach places (and it helps with the roof of mouth and areas farther back in throat.

Re the rads, I would suggest that you obtain a product from your doctor that allows you to apply the product both before and after radiation, to alleviate burning.

I also received two injections daily of Amifostene (sp?) prior to rads to try to save saliva glands. Since I have saliva glands, I cannot tell you that this worked, but...I have 'em, and that is good enough for me :).

Chemo, as with the rest, treats each of us in a slightly different way, it seems. Some of that has to do with size, as you acknowledge, and with dosage, and type, and mixture. In my case, mine included a steroid, so the day after receiving what amounted to an all day session's worth, I was supercharged and ready to paint every house in the neighborhood :). The NEXT day, however, I experienced nausea that lasted a couple of days. Even so, it was not unbearable (okay, I hid in my room in a fetal position sucking my thumb...but still ...:) and the cycle helped a lot...I could foresee good days coming very quickly. Again, whose to say how you will be affected?

Re the feed (peg) tube, please do not be afraid of it. As another respondent points out, it is often necessary as a guarantor of nutrition for you. I still have mine a year later, and while I now eat through my mouth, the peg tube is a handy device to have and certainly saved me early on...I lost 75 pounds between diagnosis and the end of my treatments (I needed to lose some of that :)) and without the peg tube or an extended stay in the hospital, I would not have made it, simple as that. I could not swallow solids for some time after surgery and treatment, and the peg tube provided the means to have daily sustenance.

I can tell you, since mine came out in the night one night and had to be replaced, that the procedure for inserting one is not such a big deal as you have already gone through. While a replacement is easier than an initial insertion, I can tell you that my replacement took five minutes (even though it took the hospital five hours :)) and did not hurt at all.

I am running on. Please be assured that while you are on your way on a slightly different voyage than you expected prior to your diagnosis, this in no way should deter you from seeking and reaching your dreams.

To be honest, boogie, there are lots of clubs with much better entry requirements than ours, but probably none where you will find such devoted and helpful friends, nor so many who are so devoted and helpful.

If you get the urge for more immediate company, please do not hesitate to join in on the chat site associated with the site (on menu to left on your start page here). You will find some really great people who DO NOT spend all of their time in the chat room talking about cancer but, instead, talking about LIFE. It sounds as though you would benefit. And if I can be of any help, please do not hesitate to contact me directly through my web page here.

Take care and best wishes!

ScottL90803
Posts: 2
Joined: Jul 2007

Hi Boogie. I hope you read what hipwr1 wrote you. The feeding tube is a must. I had my left tonsil and lymph nodes taken out last August 3rd. had 35 radiation treatments and 3 chemo treatments. I lost 40 lbs and was hospitalized during my treatment for 3 days from malnutrition and dehydration. This will be the most difficult experience of your life and the most challenging days are still to come. The effects of radiation will be worse than the chemo, but in the end you will get throught it and lead an almost normal life. Reply to this message if you want more specifics about what to expect. Get the tube and hang tough. Scott

rogerbfi
Posts: 16
Joined: Dec 2003

Hi, I am so sorry you have to deal with this, I hope you have someone to help. My husband had 38 rads front, back, both sides for nasopharyngeal. At the same time he was getting chemo, cisplatin, and taxol. After rad was done he had a break then 5-FU in a fanny pack with pic line.He also had some kind of blast to the face that at the end of rad. that sort of left him unconcious for a few days. Feeding tube, yes! After having him in the ER 3 times one week for dehydration, they put one down his nose. Aquafor is a water soluble ointment that works great for the burns, and does not interfere with treatment, it is at any Wal-Mart etc. I met someone online who took this to her sister in Taiwan. For chemo vomiting Anzemet, "Dolasetron" was finally perscribed, and it does work. Mouth sores, Xylocaine viscous solution is wonderful. My husband is an extreme case, and still uses the Xylocaine for his mouth. He still gets mouth sores, and many other problems, however as I said his is an extreme case. During treatment he went from 265 lbs. to at one point 170 lbs. He is 4 years out but faces challenges each day from radiation fibrosis, dry mouth etc. As I said, his is an extreme case, but if you get even one piece of info that helps you benefit from his experience, I wish you good luck, and pray for your recovery. B Johnston

Henge_Warrior's picture
Henge_Warrior
Posts: 1
Joined: Jul 2007

Hi Boogie welcome to the club, you seem to be about the same way into treatment that i am, i have cancer of the base of the tongue / back of throat. At the momnet i have contacted Thrush which is making swallowing anything near impossible and am today having to feed myself through my PEG. It make you feel a little better and more able to cope with what you are going through if you read my journal which is found at the following website :- www.caringbridge.org/visit/andibrigham one thing i have found is that you must be positive in your outlook no matter how low you feel and you have to remember to laugh at least once a day!! hope that by reading what i'm going through you dont feel so alone.
Andi

hobobn
Posts: 1
Joined: Nov 2007

Found out I had base of tongue cancer Jan 06. Went into a program where I was in and out of Hospital ever other week for five week. When in the hospital I was on cemo 24/7 and had two rad treaments per day - so 50 treatments total of rad. Partway through got blood clots in both legs-almost bit the dust there - but came out ok.
Legs aint what they use to be but ok. Any way Lost tast buds and saliva glands (right side only)when they did neck disection. Went from 217lbs down to 165lbs. No feeding tube-didnt want it-forced the food down - lots of liquids - soup broth alot - mach & cheese any thing that was kinda wet. Well I have had several CT scans (another in 2 weeks)and every thing is ok at this time and back up to 197 lbs. Dry mouth is a problem - extra gum really helps with that - still get some type of slop in the back of the throat every morning and times throught out the day - but hey - I'am still here. As a matter of fact just got back from Deer Hunting this week got a spike buck and had a great time. Your friends are your best medicine after everything you have gone through - keep the faith and a positive attitude - you will survive - take care.
Bob N.

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Hello Boogie,
I was diagnosed with nasopharyngeal cancer in February and my treatment was a little similar to yours.
I had 3 cycles of chemo, Cisplatin every 21 days. The chemo didn't really get to me. I had a little nausea but that was it. I didn't lose my hair because of it. Not too tired and blood work ok.
I did 33 radiations along with the chemo.
The radiation was a bit harder (ended May 8). I lost my hair in the back but it is now growing. My mouth didn't get very sore but I religiously took care of it (always rinsing with salted water, brushing, Biotene mouth rinse, Magic Mouthwash, Gel Cam on dental trays every night). Near the end, my throat was sore and because of that I was maybe 3 weeks on liquid codeine.
The docs insisted that I get a feeding tube because I am a thin person (113 pounds) and so I did (before starting the treatments). I was not happy about that. In the end I never had to use it. Overall I ended up loosing about 10 pounds. The doctor told me that they would remove the tube when I gained back my weight. It took me 3 weeks to put my weight back on and that tube was out. It was good to have just in case.
For about a month I was on soups, all kinds of good vegetable/fish/egg soups and drinking homemade vegetable/fruit juices.
My neck did get burnt from the rads 3 days before I ended treatment but it is ok now. I applied Aloe Vera (99% pure) to the neck region twice a day and I believe that helped.
I am at the moment doing my last chemo treatment 3 sessions every 28 days (Cisplatin and 5FU). My ordeal will be over on August 17. I find this chemo a little bit tougher but nothing to worry about.
I hope this helps and if you require further information do not hesitate. I think that it is important to stay positive and to take good care of yourself and your body.
I have to tell you that when I was in radiation I used the time to visualize the healing of my body. I had nothing to loose.
Like you I was afraid but it is pretty much in the past now. So good luck and hang in there. Everything will be ok.

Paula

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Boogie, though I have not contributed to your discussion, I have monitored it. I did not contribute because I am even newer than you at this and did not know what to offer. By newere, I mean that I am about to begin 35 daily IMRT radiation treatments combined with once a week "low-dose" cisplatin chemo (whatever low-dose means, I'm still leary). My first surgery was a cyst removal back in May which turned out to be a malignant lymph node and apparently they got it all first try at that site. A second opinion Path report suspected the tonsil area as the primary site. Then on 7-25 the ENT took my left tonsil and adenoids. The tonsil was squamous cell carcinoma, the adenoids were normal, and a laryngoscopy and endoscopy both came back otherwise normal. A PET scan then showed the only cancer in my body to be at the excision site of the tonsil PRAISE THE LORD. Fortunately I did not have neck dissection or any surgery anywhere else. So, hopefully I am in good shape for the IMRT and chemo. They tell me that the IMRT has fewer side effects and that the "low-dose" once a week cisplatin is more easily tolerated. (Blowing smoke??) But, I too am scared and could use an update from you as a reinforcer. I have done the mask fitting and the bite-tray forming. I hated it because of claustraphobia and anxiety in general so I took an attivan which really helped. My rad Doc also insists on a feeding tube but I am eating and swallowing perfectly normally going in since I did not have radical surgery. Plus, I am about 25 pounds overweight going in. Don't want the PEG but I am scared of not having it when/if I need it the most.

So, please bring us up to date. How are you doing? Was your radiation the IMRT (focused) type? Do you know the dosage of your cisplatin? By what date do you think you will be through with therapy and venture on into the recovery mode? I hope you are doing well and I have added you to my prayer list. Hope to hear from you soon. I could really benefit from your experience and advice.............JK

boogie
Posts: 2
Joined: Aug 2007

Hi Everyone and thanks for taking the time to read and write me back. I wanted to update you all on my progress. Okay, so I ended chemo on 8/29 and radiation on 8/31. I never did end up getting the feeding tube. I was 120 to start and now weigh about 112. I am drinking this weight gain shake that I got from GNC. I do have sores in my mouth, but I guess I am lucky that I can swallow the shakes without any problems. I am concerned about my weight though, only because everything tastes really gross or has no taste at all. Does anyone know if that comes back. Like I said, I can do the shakes, but still.... I am just on the road to recovery now and can't wait until its over. Oh and thank god for my hubby and my dog!!! They helped me a lot through this whole thing!! Good luck everyone. You are in my prayers as well!! Maria

launicahog
Posts: 6
Joined: Aug 2007

boogie, great to read you came through with flying colors. My taste and ability to eat solids came back in stages over about 3-4 months. I'm 6.5 months out from last treatment and food is enjoyable to eat and actually tastes like what I remember. Still need to drink fluids during a meal but that is progressing as well. All in all I feel very fortunate.

You may want to have your oncologist setup an appointment with a nutritionist. They can evaluate your needs and make recommendations for you specifically. They can also arrange for liquid supplements approved and paid for by your insurance co.

And yes you are so right when it comes to your immediate support group. I credit my wife (ok and dog) for the unwavering support, love and companionship that made the ordeal much easier to deal with. Raise a glass... "To our life partners"....CLINK.

launicahog
Posts: 6
Joined: Aug 2007

jkinobay, you may want to further discuss the PEG tube with your radiation oncologist. For me it was a life saver, if for nothing else but hydration. The worse your throat may feel the less likely you will be to properly hydrate. The less hydrated you are the more severe the side effects of the radiation and chemo may be. The RAD oncologist is also interested in an uninterupted treatment. The PEG tube is another tool that will help get you through the treatments.

Intensity modulation radiation therapy (IMRT) and chemo treatment with Cisplatin is a good thing. IMRT treatments are much less debilitating, and the Cisplatin is a antineoplastic agent that targets cancer cells leaving the healthy cells intact (I do not profess to know anything about Cisplatin other than what I've read and have been told by my oncologists).

Survivor, tonsilar cancer with a couple lymph nodes, modified radical neck dissection, misc pieces and parts removed, PEG tube, chemo (Cisplatin) and radiation (IMRT).

Keep a positive outlook. You will surprise yourself on how you will get through this ordeal and bounce right back.

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

Hi - I've created a website based on our experience with making g-tube food with real food (www.lucysrealfood.com) Since my fiance couldn't tolerate any of the canned formulas and was loosing weight quickly, this is something we started doing because we had no choice. But it has turned out to be very positive for both of us. He loves eating real food and choosing what he wants to eat when. I'd love feedback from anyone who has a chance to look the website over. And I hope some of you find this information helpful. We just didn't want anyone else to find themselves in the position we were and thought it was a good idea to share our learnings. Best to everyone - Lucy

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