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Joined: Mar 2014
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Hi all,

Some of you saw that I posted my first fee treatment items in introductions -- I didn't have a lot of strength to reorganize my thoughts but wanted to get down some impressions and questions somewhere. Moving forward, I will try and do this from this branch.

So where to begin? Best, I guess, to catch everything up.

I started treatment on 3/27 with a rad to the head followed by the big dose Cisplatin later that day. Because I worried about the potential for hearing loss, we ended the day with several comprehensive baseline hearing tests. In general, I felt pretty OK about the treatment. Took on over 100 ounces of water and felt I was being ver proactive about doing my part. As they told me Day 1 wouldn't be too bad, I optimistically woke up, drive to work and sat down to out In a good 6 hours before Rad 2. Bad idea for me.

Even with the anti-nausea pills, the day after wiped me out and I was soon in near tears, alternating between waves of nausea and fitful sleep. Managed to get it together enough to get in my car and get home, took a nap and had my wife drive me to the rad.

OK, so much for that. So let's take it easy, I think. Saturday, the day it's supposed to hit pretty hard, goes OK. I can't eat anything, but I manage to keep down a lot of liquid and am feeling pretty good about myself. Weak as kittens, but on my feet (sort of -- I still sleep 2 hours at a time for every hour I'm awake).

I arise Sunday optimistic that I'm going to hold this thing together. Sunday I make the conscious effort to take on food and continue the 60 so liquid regimen. We make a smoothie and over the course of the day I manage to get it down. By 1500 it's a huge mistake. Incan't digest it, move it, drink anything, etc. the nausea and vomiting start up and I'm starting to freak out. So...we call down to the oncology department and they get me into the ER for a couple of bags of fluid, some more anti nausea medicine.

Not feeling particularly proud of that performance, but they did tell me it wasn't off the course for the first chemo. The event has soured my mood a bit, as I thought I could simply rise above any difficulty, but it also reminds me that I have to pay attention and do the right thing, even when it makes me feel weak.

My lovely wife sat with me through the entire time despite me being so exhausted as to be semi-lucid. She's the real strength!

Staying home today, hoping to recover. I am already down so many days at work, I 'm not sure how I'll get back to it when this is over. Tough to believe this is only the beginning, but I'm more determined ever to hang tough - I didn't put myself through chemo hell to quit now.

Thank you for your kind words and advice! The nausea is really a killer at every angle for me, but I know we all know it will be. Mostly, thank you for your lent strength. I know so many of you have done this, and made it, it helps me to know hat I will too.

Here's hoping today goes better than yesterday!

The Hellion



SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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Hi Hellion, as the gastroenterologist explained to me, the nausea that one feels during chemo treatment has nothing to do with food or liquid intake, it is the central nervous system reacting to the chemo medication. (John cannot swallow at all and I was worried that he wouldn't be able to throw up if he should be hit by nausea during his drug trial.) Taking the anti-nausea meds when you feel the nausea coming on is better than waiting until you are actually throwing up. Get ahead of the nausea.


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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Sorry to hear the road got a bit bumpy. Some of us are more prone to nausea than others. We used to have a comment about "polishing the teeth from the insdie" regarding the violent hurling some of us did.

I believe I went through at least 10 different meds before finding one that worked. Many of the ones used today were just being used back in 2003. Don't be shy in trying any until you find one that works.

Make sure, especially with Cisplatin, you notify the doctor regarding any changes like hearing, vision, urinating, etc., as dehydration from vomitting will exacerbate things quickly. I am glad they got you into the ER and put some fluids in you.

Best wishes for a good day today...and every day!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Aug 2013
Posts: 33
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I am sorry you are not feeling well. The last chemo I had knocked me on my butt too. But that was my fourth one. There are many different medicines they can give you to help the nausea. Don't be shy with your doctors. Tell them everything you are experiencing and they will help. Feel better soon!!


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
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My first week of chemo infusion, Taxotere, Cisplatin, and 5-FU, in 2009 turned out to be disastrous, near deadly, and put me in the hospital/hospice for 6 months, paralyzed and blinded me, and postponed my curative treatment for over a year, which wasn't planned on happening anyway, but I'm still here, and had numerous treatments thereafter, which was nothing compared to what I initally went through, and why they threw the kitchen sink at me since. Hopefully you went through your worst, and only thing after hitting the bottom it up! You can do it!


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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It's common for most of us to decide early on that we will be the super strong, succeed at any cost, triumph over this by shear force of will kind of patient. And that works great until the really bad side effects start happening. And that's when the experienced road warriors advice starts to have meaning.

I have read time after time, that when it gets the roughest is when we start thinking in shorter time periods. All I have to do today is get through TODAY. I'll worry about tomorrow ... later. Sometimes it gets down to I just need to get through the next hour.

If it reaches that level, don't feel bad, don't think of yourself as a weakling or a wuss, you're just going through your initiation into the road warriors.

Hang in there, you'll get through this too.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Posts: 319
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Posts: 319
Well and truly said, Tony! Thank you for all of us!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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Im so sorry you have been struggling!!! Most of us have been down that road and its not easy at all. I have a tip that may help but I need to advise you its a bit gross.

For those who have a feeding tube and are dealing with throwing up, there is a trick I learned by accident. This works especially well when patients have super sore throats and can barely swallow a sip of water. Its unimaginable to think about puking when your throat feels like its full of razor blades. Go into the bathroom and lean over the sink and open your feeding tube. This can very quickly remove whatever you were going to throw up without it having to go thru your throat. Just remember whatever you lose needs to be put back in. This can easily become a vicious cycle leading to dehydration. If this is something you are going thru, ask your doc to write a prescription for hydration at least 3 times a week in the chemo lab. By taking a little extra time to get a couple bags of fluids can do wonders and help the patient to feel so much better almost instantly.

Hellion, I hope by now you are feeling a little more like yourself. We are in your corner thru this whole battle.

Best wishes!!!


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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Posts: 1,291
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ditto!


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Mar 2014
Posts: 110
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Thank you all for the support. I am feeling, in general, a bit better overall, but I was pretty worried there for a few days. To say I felt shaken is a bit of an understatement. The overall feeling was kind of rough between the pain of the tumor in my ear, the nausea, the constipation, and the overall sense of exhaustion, I felt like I was on a pretty ragged edge.

I was hoping I would sail through this with aplomb -- I guess I found out that I am not, despite what I may have believed, a superhero. Alas, now I must deal with it like a mortal -- one day at a time and one issue at a time. I'll tell you who is a superhero, though: my wife. She's been next to me the whole unpleasant time. Guys, I am so ****ing lucky to have her in my corner.

I can't say I feel great, but I feel a lot better. Only two more f the Cisplatin to go, so that's good. Thanks for reminding me that I'm not a total loser for struggling so hard. It can definitely feel like you are when you're laid out shivering, nauseated and in the ER getting fluids while the nurses and doctors gather round to tell you not to let yourself get dehydrated. For those of us that have always gone our own way, always handled our problems by ourselves, this whole thing feels very debilitating. It's good to know I'm not the only one that got his face kicked in by the treatment.

Still pulling myself together, but hoping to return to work tomorrow.

Thanks for the support!! I'll add more after another nap -- naps comprise a lot of my days right now smile

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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