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#135901 06-28-2011 08:38 AM
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Well, I'm back....because it's back. I had a swollen submandibular lymph node on my surgical side. CT showed two large nodes. Needle biopsy last Friday is positive. I'm awaiting a date for my Radical Neck Dissection. My mother is furious that I want to just give up and let it run it's course. Basically, I forced her to get chemo/radiation a couple months ago for her inoperable lung cancer, so she is insisting that I get treatment too.

I'm so pissed at my sister for committing suicide last October...cuz I certainly can't make my parents go through that again.

I hate my life.

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This sucks - big time - and I am so sorry!
If you have to be pissed, be pissed at the cancer and dig in deep and give it all you've got! (just like you thought was best for your Mom)

You have an awful lot on your plate - your mother, your father, your sister's death, your own struggles - that's too heavy a load for any one person to carry. If you haven't seen a counselor, please consider doing so. Your spirit needs some TLC, a chance to vent and the opportunity to mourn.

Be brave Kelli - you can make it through this!


Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
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Hey there... please dont give up... did they do radiation or chemo on you... the neck dissection isn`t that bad. But it should be followed with rads and chemo, if you havent already had it... I know that just makes things worse, but please... you have a lot to offer. hugs...


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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I wish I could give you a big hug. That is such a lot to deal with all at once. Please keep coming back here for support and to vent your feelings if you need to. I'm recovering from a neck dissection right now. Radical on one side and selective on the other. At three and a half weeks out, I'm feeling pretty good. Cheryl is right, it isn't that bad a surgery. Be good to yourself and don't give up.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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@ Kelli: The survivors who have weighed in are giving you great advice and, if anyone can give you advice and help you through it, it's them.

You just took a big hit. It's hard to think about fighting when you've been through it already. It sucks without a doubt. It sucks more than anything except for maybe hearing, "there's nothing more we can do for you."

Remember back to when you forced your mom to get treatment for her lung cancer. I'm sure you can remember the reasons why you wanted her to have treatment. She made it through. She took the hit of the DX, it knocked her down, you helped her get back up and she got into fight-mode. Now, she's returning the favor. It's hard to want to fight right now. Soon, you're survivor instincts will kick in and you'll want to fight. Besides, you don't want to just let it run it's course. Ask any of the old-timers here (Charm and ChristineB, in particular) and they'll tell you it will be a horrific thing to go through. And, if you change your mind later and want to go for treatment, it may be too late.

I'm sorry your sister chose to end her life. It is a cruel burden to bear for everyone who is left behind. My heart hurts for you that you are going through so many tragic situations. Not knowing more, the best I can say is suicide is a permanent solution to a temporary problem. It is sad when things seem so dark that a person can't see any other alternatives. But, since you are leaning towards going back into the ring to fight your recurrence for your parents' sake, your sister's death isn't for naught. It is a fitting tribute to your sister for you to choose life.

Give it hell, Kelli! You can do it. You did it before. Why let all the effort you put into fighting it last time be wasted on giving in to it this time? There's lots of good to be had on this side of the grass. Don't let cancer take that away from you without a fight.

Sending a hug and lots of positive thoughts. This is a fight you can win!

Sandy

Last edited by Sandy177; 06-28-2011 11:05 PM. Reason: punctuation mishap

Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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My Radical Neck Dissection is scheduled for July 20. My sister's birthday :{

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Hi Kelli,

Whoa. How did that happen? Of all days! Well, it's a birthday which is good. A person could ponder the significance of this coincidence for a long, long time. My thoughts immediately went to the positives. But, really, WOW!

Keep moving forward Kelli. We're with you.

Love,
Sandy
xoxox



Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Oh hell ya, that's a postive sign for sure! Her birthday your day to start the fight with her watching over you. Sorry for your loss and God Bless you and your mom!
Good Luck, Ron's is tomorrow his 2nd time around for Oral Cancer his 3rd time with Cancer itself. He's a friggin cat my oldest daughter says. Meeeeooowww! smile


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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She'll be with you Kelli walking you through it- our loved ones do stick around to help us with the hard times.... My mom was with me all the way I could feel her and still do... By stepdad too... Good luck on your surgery... Please try to think positively that's half the battle - really.. Hugs and prayers to you.


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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I'm with Cheryl on this - I've had too many signs in my own life not to believe that our passed on loved ones do stick around to give us comfort and strength when we most need it. You are a fighter, Kelli - so keep up the fight!! You can do it! And keep checking back with us - you have tremendous support here from people who really care about you and your family.


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.)



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Hi Kelli:
I wholeheartedly agree with the others - your sister's Birthday and your day of surgery isn't coincidental! She's going to be right there with you during and after surgery to hold, comfort, and make you better. Just wait, you'll see (and feel)! Bless you,
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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Nicki:
I am so sorry to read about your Dad's recurrence. I pray that whatever procedure they do, helps him, and who knows, there is no telling how much longer he will survive. Our prayers are answered every day, and my prayers are with you, your Dad, and family.
julieann

Last edited by ChristineB; 07-03-2011 03:58 PM.

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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Hi Kelli,

Sending lots of positive thoughts your way for your scheduled surgery 7/20.

Folks who have walked the path you are starting out on are here for you and have a wealth of information about treatment and recovery. They will also have lots of information about making the transition from patient to survivor. Please take comfort in the knowledge that you can come to OCF for an ear or a shoulder. And, there will always be someone here who cares and understands.

Hang tough and keep moving forward.

Sending a hug,

Sandy
xoxox


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Hi Kelli,

All the best for your surgery, it will not last more than 4 hours and you will be out of hospital in 3-4 days. Look forward to hear from you once you are back.

And like Sandy said, there is always someone in OCF to give you an ear or a shoulder. Offshore as well now! Smile please.

God bless you,
Eshwar


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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Hey Kelli how are you doing? Thinking about you! Sending prayers and hugs your way!


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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Kelli,
I had a lymph node appear within a month after my tongue lesion was excised. You're not that far removed from the surgery. I hope that you are having radiation and perhaps chemo following, for then you will have a good chance at cure.

It is normal to feel anger at a loved one when they die, even if the death was not self inflicted. You've had some recent bad events in your life, don't be hard on yourself. If your doctors have not mentioned radiation and chemo, I hope you ask them. You deserve the best shot at a full recovery.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Today I am 16 days post ND. I feel like I'm doing okay. If it wasn't for the excruciating muscle spasms on my clavicle (where the sternocleidomastoid muscle originates, or should I say originated?) I would say I feel good. I've been using the narcotic prescribed for post-op when I start spasming, which seems to help. I wish I could figure out how to prevent them. I haven't been able to figure out what is triggering them. I massage the area almost constantly, which only helps minimally.

I have an appointment with my RO Monday (8/8) to set up my treatment planning, and make a mask. My MO is planning weekly Cisplatin to augment the radiation. I had an appointment with my dentist for cleaning and fluoride treatment, and molds taken for fluoride trays. I have an appointment for 3 small fillings on 8/16. My radiation treatments are tentatively scheduled to start 8/15....does anyone know if this will be okay?

My mom has her repeat PET scan on 8/9 for her post treatment for lung cancer. I'm worried she may be having a recurrence, as she has recent onset tiredness, shortness of breath and wheezes.

My knee arthroscopy didn't help much....maybe a little less pain, but walking any distance is agony. My knee is horrible....looks more like a 72 year old knee than a 52 year old knee. It's bone on bone, so it looks like I will need a total knee replacement, probably sooner than later.

My pathology report stated 28 nodes total, three positive, one node with extra-capsular extension. They sent a biopsy to University of MIchigan for HPV, but I haven't gotten the report on that. I will probably call my surgeon next week to see if it's back by now. I would like a copy of the path report for my own file, since I have copies of all my previous ones.

I spent about 9 hours yesterday reading the treatment forum (didn't get to bed until 5:30 this morning!) I'm learning so much. I just wish that I had started reading sooner, because everything seems to be moving so quickly now. Unfortunately, I've been in such a shock and depression induced lethargy for the last 8 months, that I don't seem to be able to get anything done.

Thanks everyone, for your prayers and well wishes. They're appreciated so much.
Kelli Jo

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Kelli

Congratulations. You have taken the first steps on beating this cancer. Dental work is usually done before radiation, but fillings done after only one day of radiation sound okay to me. Heck, I had two root canals done AFTER 8 weeks of radiation with no problems. Extractions are a different story however.
Ask your doctor for a prescription for physical therapy for your shoulders and neck. I started within two weeks of my ND and it really helped. Those muscle spasms are a bitch but they should subside with therapy (another reason to get PT).
You have been dealt a hard hand here, and there is no shame in feeling depressed about it. I don't know how patients get through this TX without a caregiver. I brag a lot here about my indomitable spirit, but without the love and support of my wife, I'd have been overwhelmed. Give your self major credit for fighting for your life. As the other posters have noted, your advice to your mom is equally applicable to yourself.
You sound like a wonderful daughter,
Keep the Faith
Charm


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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Kelli, I do not think the fillings should be any problems.

As Charm mentioned, tooth extraction will be a life-long issue. My dad's teeth are in bad shape now but any dental treatment has to be delayed due to his re-radiation plan.

You have been a fighter so do not give up.

Eshwar



Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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Hi Kelli Jo!

It's good to see you here and posting! The OCF forum is an amazing place--so much information and great advice. It truly is a godsend.

I'm sorry to hear of the pain from the muscle spasms. I hope you can get some relief so that your recovery is much less painful.

You have had more personal tragedies than anyone should ever have to bear. Being depressed and shocked would be completely expected. Perhaps it will help for you to make time for things that are completely removed from any medical stuff. Please try to immerse yourself in something that brings you joy. My ex goes to the beach and collects sea glass. I am confident that soon, sea glass will only be found in private collections--my ex's collection having become the largest on the planet. It is his escape from the stress of being and then not being and then recovering from being a cancer patient. He is still not back to normal. Maybe when he gets his MRI and an all clear, he'll be back to his old self.

Anyway, I hope you are able to find some beautiful and/or fun things to focus on and to ease your mind a bit. It's hard when you have so many things to think about. So, I'll send you a hug and wishes for peace and comfort and I'll say prayers that your mother is feeling better.

Keep strong!

Love,
Sandy
xoxox


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Please don't give up. You can do this. I know you can. God is with us every moment, every second, through every single step. Just give it all up to him. That's what I try and do. I just try and let it go, hand it over to him so I don't have to worry about it. I literally tell myself "I don't have any idea what to do with this Father. Here... you deal with it" It helps me. God bless you. With all my love and hope and faith for you.


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]


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