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#190360 07-25-2015 12:26 AM
Joined: Jun 2015
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MandaRe Offline OP
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Hello everyone....
So I am halfway through my second cycle of Induction Chemo. After the third cycle I am supposed to start chemo-radiation. I'm going in next week for the planning session and will be able to ask some of these questions then but...thought I'd ask you first...the warriors who have been through it.

I am a teacher. And much of my speech has returned!!! As well as my ability to eat and swallow!!!

I've been off work since the beginning of June when I received my diagnosis. I took that time off because the tumor covered 90% of my oral tongue (all below the surface)and my speech had rapidly deteriorated.

Were any of you able to work during chemo-radiation? I've been told they are hoping to continue the aggressive line of treatment they started during Induction Chemo and give high dose Cisplatin as the chemo during Radiation. Am I able to work around students and undergo radiation therapy?

I can take a leave and have been leaning that way all along, but I we are entitled to a retro pay out on Oct. 1st---if I am on leave when that is disbursed I have to wait until Oct 2016. I am trying to keep my family in as good financial standing as possible and obviously that money will help. Obviously if it's too difficult or not advisable then we'll make do as we have been so very lucky to be surrounded my amazing support in our community with dinners and keeping our boys busy and entertained in as close to normal teenage life as possible.

Thoughts?


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16
Joined: Jun 2007
Posts: 10,507
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Most patients going thru rads for OC arent able to work during their treatments and first month or 2 of their recovery. But then again... everyone is different and will respond to treatments and chemo in their own unique way. One commonality Ive seen is the better the patient is with their caloric intake and hydration, the better they fare thru rads.

I was unable to work from about week 2 of rads. Most members can make it until about the 5th week before it becomes too much for them. Another thing to think about is your immune system will be working very hard and you can easily pick up things that you previously were able to fight off. A minor cold could become something serious while your white counts are low. Working around children you would be exposing yourself to all kinds of extra germs.

In the end, you will have to do whatever is best for your family. If you havent already contacted the American Cancer Society about a volunteer driver and one of their reimbursement programs, try to do it soon. They give cancer patients either a voucher for up to $300 to cover their transportation expenses while being treated or a credit of $300 for their pharmacy to cover co-pays. Also, most members took some powerful pain meds making driving out of the question. I stopped driving about the 2nd week of rads and let my son take me to treatments.

You are very lucky to have so much support from your community. This will go a long way in helping you get thru this.


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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Christine pretty much summed it up. My thought is that income can always be made, but maybe not your health, so I err on the side of caution these days. I haven't worked since my initial treatment began in 2009 when I thought my small cancer was more or less like a sore throat to deal with, since I thought I was stronger, and underestimated its effect, and more so treatment. Just one misstep, and maybe not even your own, can put you on a slippery slope you may never be able to get out from under, and that's basically what I've been trying to do for the past 5.8 years with 7 recurrences due to my initial treatment stoppage.

Radiation Mucocitis, which is worsened with chemoradiation, is one of the major factors for radiation treatment interruption, stoppage, and hospitalization. Magic-mouthwash doesn't do anything for mucocitis per say, but basic oral care with soft tooth brushing, frequent rinsing with baking soda/salt water, flossing, fluoride treatment, a mouth guard for radiation scatter, and prescriptions like NeuralSal, Gelclair, Doxepin, and Caphosol do, along with pain management, nutritional support/peg, and decontamination of the mouth.

Avoiding foods that are sharp textured, hot, spicy, and acidic will help avoid cut and sores in the mouth that can worsen it, which can also be a route for infection.

Some find, and so do some studies, that manuka honey helps with mucocitis, as well as glutamine powder rinse, which repairs damaged tissue, and adding virgin coconut oil to the salt/baking soda rinse.

The radiation center can spray your mouth out daily after radiation with saline solution, which makes a difference with mucocitis, and thrush, which you'll most likely have also. Extra hydration may be able to be obtained there or in the chemo center, to help prevent dehydration.

Good luck, and seems like you're doing well, so far!


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






Joined: Jun 2015
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MandaRe Offline OP
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Hi Paul and Christine,
I hadn't even thought of the fact that I would be around my favorite little germs carriers because it's what I've been doing for so long it doesn't matter....but this isn't the usual me with the strong teacher immune system ;-/
I don't have to do this for the money----it would help loosen belts but we're ok----it's more a matter of me really loving what I do and wondering if that somehow would help get me through the next stage as well as let me work! I'll discuss with my doctors but thanks so much for pointing out what should have been obvious to me! And as always....thanks for the useful information for helping deal with side effects to come!


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16
Joined: Jul 2015
Posts: 15
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Posts: 15
Hi MandaRe,
I'm also a teacher on Staten Island and will be taking a medical sabbatical for 6 months while I'm recovering from surgery and go through chemo/RT. I did not know that my retro will be held back if I'm not at work. How can that be legal when it's money we already earned?

I do recommend taking the time off during treatment. When I went through RT the first time I was very tired and wanted to sleep all the time. Looking back it seems like a blur. I can't imagine how you will feel doing it with chemo. Most importantly, our little ones carry so many germs. Last year I went back to work and one of my students came down with Fifth disease. Good thing I was not going through treatment and must already had immunity toward it. You never know what they may be carrying. One of my students was sick for weeks. One day I was helping her and she coughed right in my face. A week later I had my first cold for the school year. Infection was oozing out of my eyes. Sorry for being so descriptive.

It is great that your speech is back! Especially with the tumor covering 90% of your tongue. Did you have surgery to remove or just chemo?


Tongue Cancer 2004- biopsy irritated skin, 2014 biopsy precancerous, February,2014 partial glossectomy- diagnosed with microscopic cancer- April 2014- partial glossectomy- microscopic cancer /cancer in nerve, June 2014- external radiation July, 2014, brachytherapy, July 2015 biopsy- cancer (about 2 cm)/also in nerve moved more toward front of tongue, August 2015 Hemiglossectomy reconstructed with arm flap 2/3 tongue removed
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Hi MandaRe,
I have been thinking of you and wondering how you are progressing?
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jun 2015
Posts: 25
MandaRe Offline OP
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Hi KeepFaith27,

Sorry for the late reply...I actually took time away from the forum while undergoing RT and Brachytherapy. I ended up not going back to work until all of my treatment was over---good thing too because even with not working, I still ended up in the hospital with neutropenic fever for 6 days in mid October. And then brachytherapy was pretty brutal and messed with my head after I coded while in the hospital. I wasn't prepared for how tough the brachytherapy or tracheostomy was going to be. After coding I was afraid to be alone for several weeks and hated all of the cancer commercials on TV. Happy to say in a much better place now.
I went back to work at the end of January and caught a terrible cold/cough within 4 days of being back LOL My teacher immunity is shot.


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16
Joined: Jun 2015
Posts: 25
MandaRe Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jun 2015
Posts: 25
Hi Tammy,
I'm good! Just found out I'm in remission smile
Had to take some time away from the forum and do this treatment thing my way for awhile. Will have my PEG and medport removed March 15th---looking forward to that!
How are you and your husband?


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16

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