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#170450 09-04-2013 06:45 PM
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MargieL Offline OP
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why am I still so depresses and angry after almost seven years I tell myself to get over it, but the pain in my neck and mouth is still so bad, that the meds I am on don't work as they used too, maybe I should ask doc a different antidepressant or meds, my hubby deals out my meds because he thinks I was taking too much I hate going out as the as I cannot have a drink without it dribbling out my mouth and the only food I can get down is ice cream and I still even choke on that, I know I should be over this by now but I am not my best friend now is valium but hubby only lets me have it if I am almost a screaming heap. and now I have also been diagnosed with rheumatoid arthritis some days I cannot get out of bed because the pain is so bad I have not posted here for some time ass we have moved to another town, I thought it might help, but no...hubby and I walk almost every day but there are days when I can hardly put one foot in front of the other. thanks for letting me vent here, and may God bless you all

Last edited by MargieL; 09-04-2013 06:48 PM. Reason: miss spelling

SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
MargieL #170454 09-04-2013 09:54 PM
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Margie, you are not alone with this! Depression in oral cancer patients is very common.

Its ok to vent, we understand exactly where you are coming from.

(((HUGS)))


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
MargieL #170456 09-04-2013 11:36 PM
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Great choice of a place to vent!!!!! As Christine wrote, "you are not alone in this".


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
MargieL #170460 09-05-2013 03:47 AM
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Margie, I'm so sorry you are going through this, and I'm not surprised you're depressed. You deserve a medal for surviving. And it must be awful if people tell you to "look on the bright side" or "see how far you've come" etc when you're feeling like sh... most of the time. At 7 years post treatment, you can at least tell yourself you are a cancer survivor, and that is fantastic, but depression is no respecter of circumstance or reason. I wish you the very best and I'll be thinking of you. Linda


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
MargieL #170477 09-05-2013 08:05 AM
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Margie, my heart goes out to you. I can only imagine the stress of long-term recovery coupled with depression, a move and worries about meds. And yet you manage a daily walk, find your way here and even share a God bless -- Wow. When you're ready, I hope you'll have a chance to reach out to support groups, new health care teams, maybe even new friends in your new home. In the meantime we are here for you!

Love & Hugs,

Mama


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
MargieL #170536 09-05-2013 09:16 PM
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Posts: 596
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Hi, Margie.

I am so sorry that you are still suffering so much. It often takes a person who knows what you have been enduring to feel comfortable letting it all out...we understand, unlike even your closest friend or spouse. Some things in life are inconceivable until one follows the very same path.

I just made a post talking about my depression/anxiety, as well.

Did you have these issues at baseline? If so, you can certainly expect it to get worse (sometimes exponentially) with treatment and years thereafter.

Fortunately, I have been managed well over the years with a medication regimen that has worked for me. They are not "happy pills" as some uneducated people say. I liken it to being a Type I diabetic, where your pancreas doesn't make enough insulin. No one blames the diabetic for his/her disease...something of which he/she had no control over getting. But, when someone's brain doesn't make enough serotonin or norepinephrine, we are sometimes viewed as "weak", "fragile", "psycho"...like we have control over it and it's a moral problem/choice to be happy or sad.

When you add multiple medical problems, especially ones that add to chronic pain (cancer and RA), the depression/anxiety often gets worse. As you know, this is a vicious cycle. The only thing I might suggest to you that has helped me tremendously is to seek a consult with a palliative care specialist/pain specialist. It has enabled me to function much better and return to work. I'm still in pain, but it is manageable. That is the key...to make it manageable. Otherwise, your depression likely will not get better.

You have more than your fair share of reasons to have chronic pain. I hope you are able to get the help you need. Perhaps talking things over with your doctors about your current treatment plan and discuss some possible changes that may make a difference.

I applaud you for getting out and walking every day. That takes a lot of energy (mental and physical) to overcome the inertia that makes you want to lay in bed all day. I know that all too well. If left to my own devices, I would currently sleep my life away, but I can't because of my responsibilities.

May I also suggest aquatic therapy. It is great for patients with RA. Since you are in AU, I'm not sure how the healthcare system works there, but I'm a PT and lots of my mentors are Aussies! It's worth a try, I say!

Best wishes to you finding your niche and getting on the path to feeling much better with a manageable life.

xo,
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!
MargieL #170550 09-06-2013 03:51 AM
Joined: Nov 2006
Posts: 2,671
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Hi Margie - Sounds like you have a great husband to help you through the rough times and keep you moving. Depression is really a bummer and it takes very small steps to realize any improvement. You've had so much to deal with, plus moving to another town is a huge change in itself. Any change in life, even if it is a good one is very stressful for anyone and can contribute to depression so it helps to have some compassion for yourself and know that things will get better even if it takes a little while longer than you think it should. I would like to echo Kerri's suggestion about trying aquatic therapy. It is amazing what just swimming laps did for me to relieve my arthritis! Come back here often and let us know how you are doing.


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.)



MargieL #170565 09-06-2013 06:20 AM
Joined: Aug 2011
Posts: 596
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Margie,
After reading Anne Marie's post, I forgot about possibly seeing a psychologist. My doctor recommended seeing someone that practices DBT (dialectical behavioral therapy). I'm sure That you can look it up. I'm still searching for someone outside Boston. Good luck!


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 #170570 09-06-2013 06:59 AM
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Posts: 80
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Posts: 80
Hi Kerri - I see that MacLean's Hospital (in Belmont) has an DBT program. Perhaps they can recommend a Doctor that provides out-patients services?

Best,
Nancy

Last edited by Nancy14; 09-06-2013 07:00 AM.

Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
MargieL #170574 09-06-2013 08:35 AM
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Thanks again, Nancy! You've been very resourceful, lol! It's very much appreciated smile.


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!
MargieL #171036 09-13-2013 09:03 PM
Joined: Jun 2008
Posts: 51
MargieL Offline OP
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Thank you all for your good wishes and sound advice Kerrie thanks


SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
MargieL #171064 09-14-2013 12:39 PM
Joined: Aug 2011
Posts: 596
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Best wishes to you, Margie! Please come back to vent any time you want...as many times as you need! Don't worry about what others think. We are all here for one another.

You deserve all good things!

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!
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