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#159725 - 01/05/13 03:17 PM Oh, how I've missed my friends!
Kerri Offline
Platinum Member (300+ posts)

Registered: 08/08/11
Posts: 495
Loc: MA
Hello dear friends,
I apologize for being offline for so long. I finished my treatment on Halloween, but since then, I have had about 4-5 hospitalizations, the most serious one being for neutropenia. Also, for g-tube falling out, and being malpositioned. Pain management, etc. Every time I ended up in the hospital, I felt as though there was another setback and I became more depressed and anxious. I felt like this was the time that I should be getting better, not worse.

So, finally, after multiple problems with PEGs (4 of them), they decided to pull the last one last week because my swallowing is good...the best news that has come so far.

I have my first post-treatment scan coming up on 1/18 and I am terrified, as many people are! I just hope it's gone. I have been waking up with panic attacks at night. I am already on antidepressants and anxiety meds during the day and there are times when I have to wake up to take something at night for breakthrough. I've tried meditation app on my phone that is really good and helps temporarily, and sometimes I do it multiple times in a row, trying to desperately glean something from it. I've even dipped my toe back into prayer, where I consider myself agnostic. I feel like I can't go on like this. When will it stop.

I know no one deserves this cancer at all. Many of us have had no risk factors and still mysteriously gotten the disease, yet I have gotten it twice, two different types, without risk factors. I don't fit into any demographic, so the doctors can't tell me my chances of survival. I ask what my prognosis is and I get the "answer/non-answer" that we've hit you with every treatment we've got. I know the doctors aren't gods and cannot predict the future. All I do know is that I have the best team I can ask for.

I realize this has turned into a huge vent...hysterical in some points...which is partly why I haven't been online. I'm looking for answers that can't be answered.

BTW, my scan is an MRI with contrast. The team feels as though that will give them the best picture of what is happening.

Thanks for listening and always being there for me.

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/SND 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.
3 clear MRIs w/ & w/o contrast since Jan '13 NED!
Part of genetic study for rare cancers @ MGH.
Just turned 40 and grateful! Hoping for 40 more!

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#159728 - 01/05/13 03:56 PM Re: Oh, how I've missed my friends! [Re: Kerri]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Kerri

No apologies necessary. It does seem our future calendars keep synchronizing: my MRI with contrast is Jan 13th and my RO will give his interpretation of it to me on the 18th (when you get the same scan). We will cross this finish line together triumphantly. Believe it !
Congratulations on getting rid of the PEG. As you now know from personal experience, the over rosy picture painted by the pegophiles does not reflect the reality and hassles of the PEG that occur to a substantial minority of us. Sort of adds insult to injury when no one seems to understand about the tube just falling out, etc.((okay, I'm on a PEG rant recently after having to burn off more granulation tissue with silver nitrate sticks which is painful). It really is a major blessing and good sign that you are free of it. You are ahead of me already!
I really understand and get the panic attacks, the unremitting anxiety, the frustrating lack of definite prognosis that are tormenting you. For what it's worth, my caregiver wife is going through almost all of that also as she worries. worries, worries when I cough up a little blood or get really tired or wake up choking in the middle of the night. It's worse for you though since you are so young and have had to go back into the hospital so many times already. Of course you wonder if these feelings will ever end and question how you can go on like this.
All I can say is hang in there. Keep meditating, praying, taking the medications. When I was diagnosed with this third round of cancer, my son bought me a journal whose cover read:
KEEP CALM & CARRY ON. That was a slogan the British government had made posters in advance to be distributed only if the worst catastrophe happened: the Nazi's invaded and occupied England. It was never officially released but has become very popular lately. I repeat it to myself as a sort of mantra right now. There is no denying that our recurrences were catastrophic but we are survivors. We know you can do this. See you at the finish line
Charm


Edited by Charm2017 (01/05/13 03:58 PM)
Edit Reason: typos
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#159730 - 01/05/13 04:35 PM Re: Oh, how I've missed my friends! [Re: Kerri]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2367
Loc: NYC
Sorry to hear of your continued troubles. There are many other risk factors other than Smoking, Alcohol, HPV for SCHNC, although these are major ones, we often don't think about any others. Even with the best diagnosis, treatment, it's difficult for doctors to give a definite answer for chances of survival since each of us are different, and so is cancer, treatment, and include other factors, and maybe even our genes, family history, diet, which is being looked into more. Probably the biggest prognostic factor for survival is tumor size, locoregional lymph node involvement, especially having more than one node involved, so control of these is key to survival since most oral, pharyngeal failures occur locoregiionslly. It's also possible that the tonsil was the primary to begin with, and missed? Anyway, the good thing is your cancer was found early initially, and and 2nd was dealt with accordingly, and did the best you could do. Good luck with the MRI
_________________________
10/09 T1N2bM0 Tonsil 48
11/09 Triple Scope Salivary stone removed
11/09 TPF IC Tx stop in hospital 187 days
07/10 NED
09/10 Met
09/10 Eye Surgery
02/11 35 IMRT 70Gy
06/11 30 HBOT
07/11 NED
09/11 Met
10/11 RND
02/12 NED
04/12 Met
05/12 Met
06/12 SND LVI PNI
07/12 Met
08/12 RND HD-IORT 12Gy Pec flap
10/12 25 IMRT 45Gy Taxo Erbitux
02/13 NED
08/13 Met
10/13 SND
10/13 Temp Balloon Occlusion Angiography
10/13 RND Carotid removed HD-IORT 10Gy PNI LVI
12/13 25 Proton Therapy 50Gy 6 Carbo
05/14 NED
07/14 MRI
07/14 HBOT





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#159731 - 01/05/13 04:56 PM Re: Oh, how I've missed my friends! [Re: Kerri]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Kerri,

Vent away darlin', you've earned it for crying out loud. I'm just happy to read this to be honest as I've missed our chats my friend.

This is scary stuff and if you weren't afraid and anxious you wouldn't be human. The best thing I've found for me is to talk about it, get your fears out in the open and into the light where they are often less scary or more easily dealt with. Personally I've always had an irrational fear of golf pants and polyester but have found through therapy that while those things are terrifying, fear is only in my mind, and how I deal with my fear is what is important. Those realizations helped me stop beating up really old guys on the golf course and setting their pants on fire...I've been one of my therapists greatest success stories.

smile

Sorry I wouldn't be me if I didn't try to make you laugh.

Love you lady!

Eric

P.S. still working on Dan's book review, I've been buried with a new project but I'll get there!


Edited by EricS (01/05/13 04:58 PM)
Edit Reason: always spelling
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#159732 - 01/05/13 06:05 PM Re: Oh, how I've missed my friends! [Re: Kerri]
Kerri Offline
Platinum Member (300+ posts)

Registered: 08/08/11
Posts: 495
Loc: MA
Oh, dear friends!

Charm: You are the voice of reason and I can always relate to you. You make be feel better. Your experience with this disease and your plethora of valid scientific information about this disease makes me happy...science and a well-designed study is rocks.

Paul: Thank you for your honest and down-to-earth view of this cancer. There ARE so many factors that play into WHY we get it. The problem is that so many of us want to know the exact cause. Not having answers is frustrating for both patients and the medical community, as well. Thank you for the well-wishes on the MRI. I know the cancer was caught early, but my surgeon erred on the side of caution and "upstaged" me so as to make sure that I got a very aggressive treatment plan. Let's hope the treatment did it's job.

Eric: You always make me LOL or put a smile on my face. I can always count on you for that, so thank you. I'm going to be thinking of golf pants all day!

BTW, I have been having hoarseness for a few weeks now. My doctors scoped me after having it for 8 days. I have to say that it's better and some days are better than others, I think with how much I use my humidifier. They said they could see 2 small areas of leukoplakia on my vocal cords. They said not to worry and they will keep a hawks's eye on it. Looking it up, I know that I have many risk factors for it. They said "don't worry about it, but I know you will". Haha...they know me!

love to you all!
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/SND 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.
3 clear MRIs w/ & w/o contrast since Jan '13 NED!
Part of genetic study for rare cancers @ MGH.
Just turned 40 and grateful! Hoping for 40 more!

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#159733 - 01/05/13 06:51 PM Re: Oh, how I've missed my friends! [Re: Kerri]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 646
Loc: New Zealand
Hi Kerri,I so understand. As a caregiver I worry at every little thing. We are coming up to the time post surgery (in months ) that Kris's reoccurrence occurred post radiation. Frankly I am terrified. Are we about to be hit again?
I'm sure this is normal behaviour for us all. You have done so well , despite many setbacks. Like Charm I'm sure your MRI will be all good.
Life just has to get better. Thinking of you,
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 2014 2 years post surgery .NED

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#159735 - 01/05/13 08:12 PM Re: Oh, how I've missed my friends! [Re: Kerri]
Kerri Offline
Platinum Member (300+ posts)

Registered: 08/08/11
Posts: 495
Loc: MA
Thank you, Tammy. You are very sweet and I'm sorry that you are a worry wart like me. It tend to get a little crazy, but I had anxiety problems at baseline. Throw in some life crisis and I'm off and running.

I hope that all goes well for all of us. You and Kris will be in my thoughts, meditations, and prayers.

We are not alone.

Love,
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/SND 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.
3 clear MRIs w/ & w/o contrast since Jan '13 NED!
Part of genetic study for rare cancers @ MGH.
Just turned 40 and grateful! Hoping for 40 more!

Top
#159738 - 01/05/13 09:22 PM Re: Oh, how I've missed my friends! [Re: Kerri]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8174
Loc: PA
So glad to see you are healing and out of the hospital! You sure had a long rough road!!! Best wishes with your upcoming scan. After what you went thru and your vigilant doctors Im sure it will turn out to be good news.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#159744 - 01/06/13 04:22 AM Re: Oh, how I've missed my friends! [Re: Charm2017]
itsoktoday Offline
Supporting Member (50+ posts)

Registered: 04/30/12
Posts: 60
Loc: California
Hi, I just wanted to jump in. I had a reoccurance in Nov 11. Spent most of December in the hospital for pnemonias. I have an MRI on 1/11 to see why there is so much pain from the neck Dx. My CT scan is set for Feb 12. Hope all goes well for you guys.
Robin
_________________________
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.

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#159746 - 01/06/13 06:57 AM Re: Oh, how I've missed my friends! [Re: Kerri]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 874
Loc: Alabama
Kerry:

So glad to hear your update, but sorry you had so much trouble, especialy with the PEG tube. Glad you're rid it it now - that in itself is a huge accomplishment. I keep up with your posts and have prayed for you and will continue. As far as being scared for your upcoming scan on the 18th (PRAYERS), I'm one of the biggest wimps on the Forum when I have a scan, MRI, or other testing. You should read my whining! Let us know how all goes and hopefully 2013 will be better for all of us.

Hugs from julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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