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#177883 03-02-2014 04:22 PM
Joined: Aug 2013
Posts: 33
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Aug 2013
Posts: 33
So I am starting radiation and chemo this week and I am so scared. I HATE that mask. I freak out when they strap me in it. I am super scared of what is to come. I am meeting with a doctor tomorrow to talk about a feeding tube. I have no idea what to think or how to prepare for this. I cry all the time. I just want this to work so my kids don't have to be scared anymore frown .


Age 36
Mommy of 4 smile
Diagnosed 8/5-tongue cancer
T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive
Path report all clear margins!
11/5/13- enlarged taste bud and mild Dysplasia
Surgery planned for 11/12
11/12 cancer cells removed
Staged increased to stage 3. T3N1
Chemo and rads started 3/4/14
33 rads and 6 chemo
Peg tube 3/7/14
37 radiation and 8 chemo treatments
Completed treatment 4/25/14
recurrence 12/1/15
surgery for Hemiglossectomy 12/11/15
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
The unknown is always so scary. You can do this, we will help you. No, its not going to be easy. Prepare for the worst and hope for the best.

Good luck!!!


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
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Theresa - yes, it's scary. But also yes, you can get through it. Ask your doctor about a prescription for one of the benzodiazapines - Ativan, Xanax, etc. If you need it you should have it to help you through rads, at least initially.

You can also bring music or an audio book into the room with you. I did it with my iPod and small speakers and it was the thing that got me through it.

The PEG tube is something I didn't have, but grew to wish I did. Get as much counseling from your docs and nurses on whether they think you need it. I found that the radiation produced so many sores in my mouth that swallowing even water was extremely painful. But as with anything, we're all different and your experience could be much better.

Mainly, I know you can get through this. We're here to help in any way we can, you're a member of our family. Ask all the questions you want and PM anyone, we'll be there for you.

Courage!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Theresa,

This response is in reference to ongoing (live) RT experience ONLY. No CT.

First of all, nothing to worry. Not giving you sugar coated pills, but the reality is one has to go through prescribed treatment options.

Making your stress less,

we have a friend here "fish", He completed almost 20/30 treatments and is doing extremely well. He experienced mouth sores for a week but he is fully functional, his energy levels are great, working 8 hours from office and eating everything despite loss of taste. Driving to and from (work and Rad Center) by himself. I spoke to him three times in three weeks over video chat. Yesterday was an hour chat. No one can tell he is in the middle of rads. You can read fish's experience here.

Like ChristineB has said thousand times, maintain calories with protein, enough hydration and pain management to get though this.

NOW,

Making your stress lesser,

I am the one lined up for rads starting 3/10. I'll open up new thread for readers once rads starts net week. Nothing happens for the first two weeks. Even Fish had nothing for first two weeks. FYI, fish is 43 and I am 37. You are the youngest, so I assume You and I will have almost same experience what fish has experienced. Common thing is, none has PEG tube. Just stay positive, eat, drink, watch netflix and do little exercise. BOOM>>>> You are all set.

Good Luck....

Last edited by neversmoke; 03-02-2014 08:56 PM.

Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear

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