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Joined: Jun 2009
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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.
Joined: May 2011
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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]
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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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
Joined: Mar 2011
Posts: 30
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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
Joined: May 2011
Posts: 287
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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]
Joined: Jan 2011
Posts: 571
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Posts: 571
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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