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Joined: Feb 2013
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Hello Angels again! I posted once post surgery to find foods I could swallow and received answers that helped! Now, I am concerned about radiation as my next step? My path report was: HPV+, primary base of tongue 1x.5cm clear margins, 6 nodes removed same side and one cancerous 3+cm clear margins. The UCLA head&neck surgeon stated I need radiation due to the size of the one node? I have NOT met with the radiation oncologist YET. What do I need to know as far as options when dealing with radiation? How much agony will I endure? I just had my 1st good meal yesterday; am I going back to not eating? Thanks for all your support?


Mark Cohen
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Mark, congrats on a successful surgery! Best wishes with your recovery!

The better your nutrition and hydration, the easier it will be for you to get thru rads. I cant stress the importance of nutrition and hydration enough, it can mean being hospitalized for malnutrition and dehydration (like I was). Not everyone struggles! Some sail right thru it fairly easily. As patients, we always get apprehensive about the unknown its only natural to fear the unknown.

Anyone who offers to help, write down their name and number and tell them when the time comes you will let them know what they can do to help.

Go to the dentist for a full check up including having flouride trays made.

Get a full blood count including thyroid.

Work hard at your recovery. Push yourself to eat everything you can and then take a few more bites. Its very important to try to build yourself up before starting rads. High protein whey powder mixes easily into most drinks and will help you heal faster.

Stay busy so you dont worry.

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
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Hi, Mark
if you are not stubborn (like my husband) and actually take the pain meds will help a lot, but it's not going to be pleasant. If you do not also have to have chemo on top of the radiation it will be easier.
The lost of taste and weird taste bothered my husband more than the pain. The radiation will not impact your eating immediately, so eat lots of good, healthy food now! The OCF board has a LOT of collective knowledge on helping get through RT!
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Hi mark I am twenty treatments in of thirty five, similar cancer as yours, I am still able to eat some foods at this point, really makes you feel off if you don't get the 2500 calories they suggest, the couple times I was low I felt it. I have not taken anything but ibuprofen for the sore throat and mouth, I rinse lots with biotene have found that iced cappuccinos are great and that linguini with Alfredo sauce goes down well and still has some taste, make sure you eat everything you like now as it didn't taste the same after the second week for me, everyone is different with treatment hopefully yours goes well....ken


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
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Welcome. Each patient is different in the amount, areas of radiation received due to the TNM staging, location, size of tumor, other involvement, lymph drainage, bilaterally, if having chemo concurrently, prior surgeries, and so on. As such, each are different in the extent of acute, and late stage toxicities, but there are many common ailments, and some uncommon ones, occurring for your particular type cancer, including BOT, most which start occurring 10-14 days after starting radiation, OCF has addressed most all, so in the side bar you will find the areas for the topics addressed, which can best explain them, in addition too, posting any questions here. Good luck with the RO visit.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hi there.. .the average for radiation and chemo is either 6 small doses of chemo, or three large during the time of your radiation.

Radiation generally runs from 33-35 treatments delivered daily over 6-7 weeks with weekends off.

Usually the first 3-4 weeks are okay, after that food tastes like crap, everything burns or hurts going down, you end up with mouth sores, and swallowing becomes a problem.

This continues for an average of 2-3 weeks post treatment as radiation is cumulative and the worst of it is at the end.

Pain management is very important.

Also it is unusual that they only took 6 nodes - the standard is 30 and up, and normally with HPV related cancers they do radiation and chemo first because it responds well to to this treatment, often - unless the tumor is in the tonsil, they don't even do surgery so this leads to my next question.

Are you being seen at a ccc?

best of luck getting through it and eat up now.

Pain wise... some have a brutal time, some have an okay time. The rest fall into the middle with doable but bad.

Nutrition has a direct bearing on how you do. Eat healthfully, as long as you can. Make sure you get enough hydration and nutrition. This is how you heal and prevent serious stress on an already stressed out body. Nutrition boosts your immune system, and heals remember that when your loved one is arguing with you to eat or drink your dinner!!!

hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Mark, all of the above is very good advice. To that I would just like to add that you should use a non fragrant skin cream like Lubriderm from Day 1 to get on top of the radiation burns. We heeded Christine B and Cheryl 's advice and brought the cream with us to the Rx sessions and John would apply it as soon as he came out of radiation. We also did the saline soak diligently, four times a day. The skin will break down from the radiation and you don't want to have to deal with weeping sores. The body is on a delicate balance while it is undergoing treatment for cancer. Do whatever you can to avoid tipping the balance.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Do NOT apply before rads.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Mark, I took the liberty of sending you a PM which should be in your inbox. Congrats on the successful surgery!


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

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