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#181619 05-11-2014 01:18 AM
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With 24 treatments down and 6 to go I'm beginning to understand what this is all about. I just don't feel myself. It follows a different arc to recovery after surgery which has been my forte in recent decades.
I'm going to put pen to paper tonight and figure out some strategies and philosophies and mantras to help me get through at least the next three weeks. It's like all of us. We have big surgery, start to recover from that, then wham, chemo, radiation or both.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #181625 05-11-2014 06:10 AM
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Right about now is when the struggle really begins for most patients. The last week is the hardest one to get thru. Even though rads continue to work even after the patient finishes in my opinion the final few days of rads were harder. Thats when I attempted to quit my treatments so I could just stay home in bed until I felt better. Its didnt work out as my son and nurse insisted I finish every single one. Just keep telling yourself "this too shall pass" and all those other encouraging sayings.

If you can get hydrated in the chemo lab, that would really help you alot. I always felt so much better whenever I got hydrated with a couple bags of saline. Here in the US, it takes a doctors prescription to get hydrated. Hydration is not offered, you have to ask for it.

As far as calories go, Im sure its getting pretty difficult to hit the magic numbers of 2500 calories and 48 - 60 oz of water every single day. I know if you push yourself and have a day where you take in about 3000 or even 3500 calories and 60 oz of water, it will help you to feel better too. I know its really hard to do but by pushing yourself to take in more it really will help.

Hang in there!!!



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
Alpaca #181636 05-11-2014 01:47 PM
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thank you Christine. You really keep me going!!!


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #181639 05-11-2014 04:48 PM
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You're welcome!

I know its not easy and often OC patients can feel hopeless. Towards the end of rads is the part where it really starts getting hard. Hang in there, I have faith in you that you will get thru this.

We are here to lean on when you need us.


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
Alpaca #181646 05-12-2014 06:50 AM
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You will get through it - planning ahead is a must near the end but you are doing so well. Blessings to you.. And many hugs. Remember think of what would make you feel better as you go through this and try to employ some of those tactics. smile

Last edited by Cheryld; 05-12-2014 06:50 AM.

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
Alpaca #181659 05-12-2014 09:24 PM
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I agree with Christine with respect to the IV hydration, especially at this point.

Also, be sure to stay on top of your pain levels so as not to let them get out of control. I had a palliative care team taking care of me. They help to manage a cancer patient's pain, not just end of life issues.

Best wishes. I know how hard it is and I am so sorry that you are there right now. Just remember, this will save your life, even though it feels like it may be killing you at the moment.

You will be in my thoughts. If you've made it this far without a PEG, then I applaud you. I think I had one place during the third week.

In good health,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Alpaca #181662 05-12-2014 10:21 PM
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Thanks, people. Remember that I am not having chemo so my issues are not as bad as some people's. Unpleasant all the same but having had chemo by itself 18 years ago, I can imagine how it must add to the mix of nasty side effects.

Only four more treatments to go! Don't feel quite so bad tonight - maybe because staff were quite encouraging today. Had my weekly visit to the radiation oncologist who said that it might not get much worse after this week. Ray of hope. Keeping on top of the nausea.

I'll consider the hydration if I'm in dire straits but right now it's up to me to keep drinking.

Love to all
maureen



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #181673 05-13-2014 08:29 AM
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Hugs girl...


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
Alpaca #181684 05-14-2014 12:03 AM
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Three days to go and I've picked up a bit. Not feeling so deeply unpleasant. My skin's really red but they say it's in good condition considering the number of treatments I've had. I've got thrush but can't feel it the way I normally do. Whether it's because of the numbness in some of the area or the Oxycontin I take am and pm, I don't know.

The slight improvement could be because I've increased the anti-nausea meds or because the staff have been very encouraging. Maybe because I have another of my sons working from home at my place this week. I guess I feel better when the conditions around me are more congenial.

Dietician has suggested that I try to eat something with texture like a weetbix (cereal biscuit that can be softened with milk). I can't stand the taste and feel of oatmeal right now.



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #181702 05-14-2014 11:46 AM
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Try Bran Buds in Yogurt. This will help with the texture you need plus the thrush. Even though you can't feel it right now, get the thrush under control - it is painful and nasty once you do feel it! The medication for it doesn't taste badly, and is fairly inexpensive and effective. Hugs. You WILL get through this, and the sun WILL shine again!

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Alpaca #181710 05-14-2014 10:33 PM
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Thanks Donna. I'll look for the Bran Buds to see if we have them or something like them in New Zealand. The more things I can eat the better. Fortunately I was able to eat a weetbix today: covered it in hot water, then milk and brown sugar. Don't know if I needed the sugar because the wheaty taste was not too bad at all. As the dietician said the texture was just right and my poor old mouth could process it very well.

TWO days to go with a weekend in between.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #181719 05-15-2014 07:59 AM
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Soft and mushy... still my friend. hugs... you are almost there. This was when I found it the hardest. This weekend before the last two days...


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
Alpaca #181765 05-16-2014 01:04 PM
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Ahhhh ....only one day to go. It's the weekend now and Monday is my last day. I seem to have just about got through the dreaded last week although I'll see what the side effects throw at me over the next few days. My face is red, rough and dry. There's a sharp pain in jaw and ear .... but only from time to time and it seems to fade if I move around. I wonder if it's some sort of fluid build up.

I don't identify my tiredness as fatigue because it doesn't feel like that. Once I'm up and about I can stride along and hurry through tasks etc but I feel a lack of initiative. I also sleep for a long time at night and don't dare lie on my bed in the daytime or I'll fall into a half sleep and wake up feeling ghastly.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #181766 05-16-2014 01:22 PM
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Finally...the finish line in sight!


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
Alpaca #181779 05-17-2014 03:55 AM
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Congrats on your upcoming finish. Mine was two days after Christmas last year; had a treatment on Christmas Eve and another the day after Christmas, so couldn't travel for the holiday. But, friends invited me to spend the day with them, great food, but I couldn't eat any of it, had to do my bottles of Ensure instead.

Now that I'm several months post treatment I've been through the worst of it. With any luck at all yours won't be too bad.

Hang in there, it gets better, it will just take awhile

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

Alpaca #181786 05-17-2014 12:16 PM
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Hi there, Alpaca,

Don't have anything useful to add, but came here anyway to help you shout "Wooooooo Hoooo!"

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!
Alpaca #181793 05-17-2014 07:01 PM
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Thanks, people. One more day of the uncomfortable tongue bite and tight, tight mask. I'll sort of miss the staff though. They took good care of me.

Side effects are bad now though. An ulcer has broken out in the skin of my cheek. No bothering me physically but worries me a little. Nausea is hard to get rid of and the thought of putting food in my mouth is anathema to me. I just make up a milkshake with Fortisip 4 times a day and have one weetbix with milk.

My constant companion is my laptop. When things get a bit slow I look things up on Wikipedia or watch episodes of Coronation Street. I did slip outside to dig up some new edgings for my garden, something I can manage for about 10 minutes. Also tried to take a close-up of a newly hatched Monarch butterfly but it took fright at the sight of me and flew uncertainly into the bushes.



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #181794 05-17-2014 09:17 PM
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You're doing well. The ulcer on the cheek is normal rads is brutal - hugs..l one more day... YAY!!!


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
Alpaca #181803 05-18-2014 05:43 AM
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Good luck tomorrow, and congratulations


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






Alpaca #181813 05-18-2014 06:30 PM
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Well I think it's morning right now (at least) where you are, Alpaca, so maybe you're even finished. Wow! Your courage is brilliant. I send all good vibes.


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
Alpaca #181819 05-19-2014 02:26 AM
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If you do need IV hydration, see if they can do it in the infusion unit rather then the ER as Christine stated. Its much faster and the staff is really good about IV placement. Being dehydrated will make you feel like crap, interrupt homeostasis and worsen constipation. Yogurt, with acidolphilis is a good preventive but if you have an active case of thrush you will need Diflucan for that


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Alpaca #181822 05-19-2014 06:21 AM
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By the time you read this, you will have finished all the rads. Congratulations, Alpaca. You can now focus on getting better.


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.
Alpaca #181825 05-19-2014 07:50 AM
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Yes - wooooo hoooo go girl!!!


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
Alpaca #181836 05-19-2014 03:03 PM
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Yes, finished yesterday, wrote a post, then lost it. Never mind - I was jubilant about finishing in spite of feeling a bit sore, washed out and blah.

Side effects? I've lost one kg since treatment started, lost most sense of taste, have a sensitive, swollen mouth, little energy and rough, dry red skin with some broken down patches. I can see only one ulcer but the nurse said the very red skin in the scar near my ear was about to break down so I have a dressing which looks like a ruff around my neck.

I'm sure I've left out some effects. Last night I had to pace the floor for a while because of the pain in my ear. It dispelled quite quickly and I went back to sleep until 8 am. Late for me! Most of the time Oxycontin keeps pain at bay.

I'm giving these details because I always want to know how the side effects work out in others so hope my accounts might add to the mix.



1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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