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Kerri #153668 08-25-2012 08:49 PM
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Hi I know Paul from another blog and Facebook - I'm sure he'll be along to explain but he had complications with chemo that almost killed him because of this his treatments were delayed - I know I'm oversimplifying things abd I'm sure he'll elaborate - but gets to hoping they got it ALL this time!


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
Kerri #153741 08-27-2012 04:32 PM
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Hi Kerri,

Induction chemo messed me up from completing treatment. After the 5 days of TPF I was hospitalized for 6 months, could not walk. That did kill the cancer, but it came back, as just chemo does not cure tonsil cancer, so I could only do radistion, no chemo due to my body no being able to take it. Then had a rcuurence and had a RND. Then recurrence again, Neck dissection, which had positiv margins, and cancer came back, so I had Anothet neck dissection, radistion during surgery, and a pectoral flap. I have no real support team. I support myself, bsdically. I go everywhere along, and lucky to get a ride home after surgery.


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






Kerri #153751 08-27-2012 06:37 PM
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"OCF Canuck"
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If you were here I'd offer you a ride!! frown sorry you have to go it alone.


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
Kerri #153754 08-27-2012 07:12 PM
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Paul, I'm so very sorry that you've had to travel that sh***y road, not only that, but alone.

I cannot begin to imagine what you have had to experience. You definitely deserve a break (more than a break)!

Thank you for sharing your story. I will be thinking of you and hoping for smooth sailing from this point forward.

xoxo,
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!
Kerri #153869 08-29-2012 07:12 PM
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Posts: 596
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BTW, dear friends...

My tumour is HPV-, so they are going to more closely compare the slides side-by-side to try to determine if this is a recurrence or a new primary...ugh! I'm not sure which will be better, prognostically.


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!
Kerri #153872 08-29-2012 09:14 PM
Joined: Sep 2006
Posts: 1,357
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"OCF Canuck"
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If a new primary, they will feel they can implement all of their arsenal of treatments instead of feeling restricted by what they did before. Hugs to you. I know how tough this is, but you can and will get through it.

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)
Kerri #153873 08-29-2012 10:38 PM
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Posts: 596
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Thank you, Donna. It seems as though you had a very tough road for a while, but you've been doing great ever since. We all need hope! Xoxo


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!
Kerri #154285 09-08-2012 10:23 PM
Joined: Aug 2011
Posts: 596
Kerri Offline OP
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Hi, All.

I just wanted to give you an update.

I saw my SO on Friday. It wasn't the best news, but it's kind of what I what I expected.

I told you all that my tonsillar tumour is HPV-. My SO is still convinced that this is a new primary tumour vs. a recurrence.

I asked him what this meant prognostically and he couldn't give me an answer because I don't fit into any of the demographics. He said...this is your second carcinoma, separated by significant amount of time, and you don't have any risk factors. He said that he doesn't like that this has happened at all. Further, he said that he thinks I have a good chance of beating this because I am young and that they are going to be very aggressive in my treatment because I can handle it. He said that I am going be basically watched like a hawk. *Sigh*

I know this isn't the most clear, flowing post I have written. I just wanted to sputter out the basics.

Treatment begins Wednesday, with chemo and rads. I will have chemo every Wednesday, and radiation daily. I feel exhausted and the wheels haven't even hit the road yet. I have a cold, too. F'n fabulous as I have to put that gigantic bite block into my tiny mouth and breathe through my nose. Sorry, just venting...rambling.

I feel like this has been the longest month of my life...waiting for treatment to begin. The first time I had OC, I was diagnosed and surgery was 2 weeks later and the cancer was gone. This time around, just knowing that it's been in my body dividing, thriving has made me nuts! Just get it out, kill it so it doesn't kill me!

I'm trying to remain grateful for the wonderful things I have in my life and all of the help I have...the amazing things that people are doing for my family. At this moment, I feel guilty because I am so angry and bitter and sad for myself. Cognitively, I know that guilt is a useless emotion, but I have just mastered it lately. I just want to scream. I feel like there needs to be a line of people waiting to shake me back and forth and slap me across the face (like in "Airplane").

Rant over and out.

Later my friends...


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!
Kerri #154287 09-09-2012 03:33 AM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Oh Kerri - I'm so sorry you are having to go through so much. No need to feel guilty that you are angry and bitter. Let it out. Be angry!! Vent all you need to! And use that anger to give you the energy to fight like H E Double hockey sticks!!! You are young. You have family. You have friends to support you and every reason take on the Cancer beast! You can do it! We are in this fight with you. Come back here often and let us know what's happening.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Kerri #154291 09-09-2012 05:54 AM
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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Hugs girl... I totally get it... I was the same way from the minute I was dx'd - I was - get it the hell out now. You are actually part of a small demorgraphic... Pandora here (my Canadian compatriot) has also had a second primary 2 years out and she's still here and doing well... There was someone else as well way back - they went for a different try of treatment - but as far as i know theyre still around. Good thing is you don't need your tonsil - so hopefully they'll throw the book at you medically and scare that crap away! smile good luck Wednesday!


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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