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#21831 12-27-2006 06:18 AM
Joined: Nov 2006
Posts: 39
LauraT. Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Nov 2006
Posts: 39
Hi guys, Im Laura, I introduced myself back in November. After surgery and agreeing to remove one of my molars, Im starting radiation therapy today. Ive been actively reading all of your posts, I don't post often since I feel I don't have much to offer as far as advice or experience , yet.

It's been a whirlwind of medications, doctors, hospital visits between my appointments with oral surgeons, ent, radiologist, tests , etc plus my daughter's hospitalization, and 6 weeks of iv meds at home. She is finally back to her normal self and hopefully will be feeling good for a long period before having to do another round of ivs. My daughter is 7 btw, and has gone through what some of you have since her diagnosis at 9 months old with cystic fibrosis. She has a mickey-button (g-tube), nissan fundiplication, and port-a-cath. She has gone through 5 surgeries,3 bronchoscopies and numerous tests, tune-ups ,etc. If my beautiful baby can go through everything she does. I will get through radiation tx too.

Im really scared. More that I won't be able to care for her, or be a good mommy to her during all of this. Hopefully I will. I also have a small bump where they removed my molar from a few weeks ago, slightly worried about it as well. I guess after diagnosis of cancer in your mouth you inspect it like never before...lol. People/family probably think Im driving myself nuts and worrying for nothing. Not sure they understand what Im going through.

I hope you all had a wonderful Christmas/ Holiday. I spoiled my kids rotten. It was a lot of fun! The radiologist told me I probably wouldn't feel any affects for a few weeks , so hopefully I'll be able to enjoy a nice dinner/ movie out with my family for New Year's.

Anyhow, if anyone has any suggestions or advice for side affects for tx, please throw them at me!


Laura T T2NOMO Small Salivary Gland Cancer
#21832 12-27-2006 07:01 AM
Joined: Jul 2006
Posts: 109
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Joined: Jul 2006
Posts: 109
Laura, Welcome laugh the doctors are right, you probably wont have anything to worry about the first 2 weeks, so enjoy New Years with your family! The most important thing i can suggest, is getting the "Tube" ASAP. I wish i would have listened and not been so hard headed! If you insist on getting it no later than your 2nd week, life will be so much easier on you. I started losing my taste after the 2nd week, and so that made me start losing my appetite too, then pretty soon, you just dont care about eating, but the bad thing with that is, i went in and out of the hospital 4 times and it makes it sooooo much harder to heal, and longer to heal. So with you being the main caretaker of your daughter, you need to stay strong by eating and drinking(even if you dont use your mouth to eat) the tube takes care of the nutrition your body needs. Let us know how you are doing, and know we are all here for you! laugh

#21833 12-27-2006 08:32 AM
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Hi Laura,
Whether or not you are using the peg, it is important to continuing swallowing the entire time to avoid problems in the future. The side effects shouldn't hit until about 9-15 days in. If at all possible continue to drink liquids the entire time, especially water. It helps flush the effects of radiation. I found I could only drink certain bottle waters, others burned. I liked them ice cold. Read Gail Macs posts on what Barry did. They should really help you deal with the side effects.

Take care and enjoy New Years.
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#21834 12-27-2006 12:17 PM
Joined: Jul 2005
Posts: 624
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

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Posts: 624
We tried all sorts of bottled waters and found that some did not taste good. Finally we found that Poland Spring and also, Trader Joe's water were the least distasteful. Interestingly, he liked the water room temperature, if it was too cold it caused him to cough.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#21835 12-27-2006 01:07 PM
Joined: Sep 2006
Posts: 8,311
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Laura,

I did not have the Peg and it was tough but I'm not sure I would get it if I had to do it over again. I have read many posts of people with the Peg that had a lot of problems both during and after Tx. Also my RO didn't want me to have the Peg.

As far as side effects, listen to everyone above. You have about 2 weeks before it can get rough. You will loose your taste in stages and you will start to feel sore in the throat area. As you get more rad your side effects will increase. It's extremely important, whether or not you get the tube, to drink your recommended water and consume your daily calories. Easier said than done as you will find out but it's the most important thing you can do for yourself.

Most of us had trouble keeping up and wound up in the ER a few times to get hydrated.

You will soon be on a liquid diet and you will want to swallow the least amount of nutrients to meet your caloric goal. I found Carnation Instant Breakfast VHC which has 560 calories in a 8 oz can. I could only tolerate room temp and without taste it didn't matter to me. You can order it from your pharmacy like Walgrens or CVS cheaper than getting it online. It's actually cheaper than Ensure or Boost Plus and you won't have to drink near as many cans which, as I said, will become very important.

We will be with you throughout your TX so as you experience any side effects don't hesitate to ask any questions.

As to whether or not you will be able to help your daughter will depend upon how you feel. It was all I could do to survive but I didn't have a child that depended on me so it may make a difference. It would be much better if you only had to worry about yourself so hopefully that is an option.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#21836 12-28-2006 06:33 AM
Joined: Jun 2005
Posts: 72
Supporting Member (50+ posts)
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Posts: 72
Laura -
I am sorry you have to be here - but the OCF site/board is the absolute best resource for information about any Oral Cancer.

The treatments are tough - but it is the few weeks AFTER the treatments that are the hardest. Everyone handles the treatments differently - some have few complications, other have many. My husband was in the latter group. Get the Peg tube -- if you don't use it, fine. But it will be there to help you stay hydrated. Another huge plus for the tube was the ability to take meds through it. Most of the meds are available in liquid form - make sure your pharmacist knows about your treatment and she will be a tremendous help. What meds don't come in liquid form can be crushed (be sure to ask first though!). Keeping the pain under control is crucial.

Read through the 'getting through it project' posts for some 'what I wish I had known' tips - you may find some good ideas there.

Your daughter sounds like a trooper. I would recommend that you make arrangements for help. If you feel good and don't need extra help, then that would be great. Your body is going to be going through hell and truthfull, it is going to probably knock you on your behind some days. this is where the confidence that your daughter is taken care of comes in. You can better concentrate on healing if you are not worried about her.

You have a tough road ahead of you - but you can do it!

Carol R.


Carol R - caregiver to hubby Ken. Stage 4, SCC, BOT. 6/05 dx, 9/25/05 last tx, 5/06 stroke. Four years cancer free! Still taking things 1 day at a time.

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