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#195661 01-31-2018 03:09 PM
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Pgrady Offline OP
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I had a lump in the right side of my neck, long story short, CT scan showed necrotic lymph nodes. Biopsy showed HPV positive squamous cell. Had surgery on 1/8/18 at University of Maryland and the removed my tonsil, lymph nodes and part of my tongue. After pathology, the cancer was found in the tonsil. As I am now set for chemo & radiation combo, I was wondering if anyone has opted for the lower dose chemo(weekly for 6 weeks) vs. high dose(every 21 days 3 treatments total starting day 1) ?? Any input would be appreciated


P Ayerle
Pgrady #195662 01-31-2018 06:19 PM
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Welcome to OCF! You have found the best resource for info and support. We have been thru this ourselves and speak from first hand knowledge of what its really like going thru rads. We understand where you are coming from and can give you pointers to make rads as easy as possible. We're here to listen if you want to vent nd will try to answer your questions as much as possible. Take some time and read thru posts to learn more about your illness. The more you absorb, the better of an advocate you will be for yourself.

We do have quite a few members who have had the smaller weekly chemo instead of the 3 big bag method. Ive noticed the patients who do the weekly chemo find it much easier to tolerate. Many of the patients who have the big bag method will go thru a pretty rough time where nausea takes over and really makes them feel lousy. Of course not every patient will experience the exact same result but if given a choice I would opt for the weekly. I have watched hundreds of patients go thru rads with and without chemo and paid attention to those who have smaller weekly doses. I had the 3 big bag method and was so sick the second dose was cut in half. Even half was still too hard on me and my third dose of chemo was cancelled. Ive seen quite a few here who were too sick to get the 3rd dose. Those who have the smaller weekly dose of chemo dont have as severe ups and downs as the big bag patients do.

There are several chemos that are given to oral cancer (OC) patients. I had cisplatin which is usually the most prescribed kind. Theres also carboplatin and Erbitux (AKA Cetuximab). Pay special attention to any change in your hearing. Even a slight buzz in your ears needs to be reported. Cisplatin is known to cause permanent hearing loss so watch for any changes and no matter how insignificant you think it may be, report it to your nurses and doc prior to getting another dose of that chemo. Your doc can and should switch your chemo to something else if you notice any issues.

On chemo days its very important you drink extra water (even though they will give you fluids when you get chemo) to flush the poison out of your system. Chemo can really do a number on patients kidneys so watch for any issues and report it to yoru doc right away. While you are recovering and waiting for your next phase of treatments to begin do your best to eat all your favorite foods, desserts too. Im sure your mouth is still pretty sore from surgery so just do the best you can. During rads and recovery, your sense of taste and ability to swallow will both be temporarily compromised. You definitely do not want to go into rads having cravings. During rads and recovery, try to start monitoring your intake. You will need at least 2500 calories and 48-64 oz of water every single day during rads and at least thru the first year after finishing rads. Your body is burning up calories at an incredible rate trying to fight off the cancer and repair itself from the surgery so extra calories are needed. During this time, 3000 or even 3500 calories are not too much. If you can do more that will only help make everything easier for you.

When you tell friends and relatives about your cancer they will probably ask how they can help. Make a list of everyones name and contact info. Tell everyone who offers their assistance you will let them know what they can do when the time comes. Theres a so many small things that can help make this easier for you to get thru. Things like picking up prescriptions, walking your dog (if you have one), or just stopping in to feed whatever pets you have, driving you to your treatment, picking up and sorting your mail, grocery shopping, cooking a meal for you and/or your family, doing a load of wash, taking out the trash, and keeping friends and relatives updated are a few things that are a huge help when you arent feeling the best.

Stick with us and we will help get you thru your upcoming rads. I know its not easy. Hopefully you will be one of the lucky ones who sail right thru treatments with barely noticing any side effects. Feel free to ask questions and we'll do our best to answer. Best wishes with everything!!!






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
ChristineB #195668 02-01-2018 08:51 AM
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Pgrady Offline OP
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Christine, thank you very much for the information. I have discussed the side effects with the docs and I am set for the Cisplatin 3X. We discussed the weekly lower dose but my concern was long term effects not being as good with the weekly. Sounds like there is no study or compelling data to say weekly works as well for the HPV positive. It appears to be going in that direction, but this is not something I want to get wrong. All of your suggestions are very much appreciated and I'm finding the forum helpful.


P Ayerle
Pgrady #195674 02-02-2018 07:57 PM
Joined: Jun 2013
Posts: 346
Likes: 3
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I had the weekly with radiation. The radiation has caused me more problems, especially long-term, than the chemo ever did. For what that's worth. But everyone's needs and treatments will be different.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery

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