| | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Christine,
I'm so sorry to hear that this is back again. Keep up your great spirits and please do enjoy these next few weeks. My mom is now recuperating from her fourth bout of this "stuff" and I'm praying that this will be the last time either of you has to go through this. May you both get healthy and strong after this!!! Hang in there, girl!
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Christine,
You've been through so much and now to have to deal with this a 3rd time is beyond words. Thanks for all the info and support you offer this forum. Your upbeat attitude, caring answers and courage are awe-inspiring and so needed. There isn't much I can add to everyone's comments except to say thanks and tell you how very much you are appreciated. Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
So far my doc is planning on the big surgery towards the end of August. I still must have a consultation with the plastic surgeon. My doc also wants me to have a blood test to type match my blood in case I need it for surgery. The pre admission testing guys always love me too, with trismus they never want me to do the operations. Even without teeth I still cant open very wide. At least not right now, doc thinks that will improve after this surgery.
I still dont feel sick. I get tired more easily and my mouth hurts in the open spots sometimes. Other than that I feel fine physically. Mentally Im starting to struggle with the idea of a long road to recovery. Im not the kind to sit around and do nothing, being told 6 mo -1yr recovery makes me nervous. Im not much of a tv person, I would rather work outside around the house. Even when reading books, I have a hard time relaxing and keep thinking about what I need to do.
I wish I had a fast forward button to go to bed one night and wake up and its 2010.
ChristineSCC 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  | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | You're gonna be fine. Don't think too far ahead and you'll be ok. Take one day at a time because that's all any of us really have anyway. You are a tough lady and that will serve you well-that and all the prayers people will be sending your way. Many love you and care about you!!!!
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Christine, What you are dealing with is normal and you are handling it beautifully. That is a long time for healing so I understand your struggling. I wish you could sleep through it too!! Wouldn't that be nice? As always, you have my support and I think of you all the time. Maybe when your starting to feel a little stronger after the surgery I will come and take you for a drive or to a movie....we'll get you out of the house:) The longest I've had to recover is about a month and I couldn't stand that and I'm a T.V person. I will put my thinking cap on for some good ideas. What about knitting, do you do that? As you know.....please don't hesitate to let me know if you need ANYTHING. Love, Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | With all the crap you've had to put up with and they are just getting around to find out your blood type???
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Tomorrow is my CT scan. Im a bit nervous about it which isnt like me. This will tell my doc how much of my jaw he needs to remove. The top is where the PET scan indicated cancer, but the biopsy also showed it in the bottom. Today was a sad day, but also good at the same time. I feel very fortunate to have gotten to meet several OCF members in person. Last year I met Suemarie and her husband Neil at Susan Lauria's walk in honor of her brother David. Today Sue came to visit. Her mother is taking my beloved dogs either for good or until I am recoverd enough to care for them again. To me, that is a true friend, helping someone when they are down. It was very nice talking with Sue today, I cant say thank you enough to her. Now if only somebody would buy my house
ChristineSCC 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 | | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Christine
I just want to let you know that I will be thinking of you tomorrow and hoping for the best possible outcome from your scan.
I'm very sorry that you are unable to keep your dogs during your treatment but once you have recovered from this beast you will be able to be reunited with them again. Sue and her family must be very caring people, so your dogs are in good hands.
Also, during my jaw operation I lost alot of blood and was given 1 unit of blood and then the next couple of days following the surgery I was given another 2 units of blood.
Stay strong
Karen ((Hugs))
Last edited by Karen Rose; 07-26-2009 07:22 PM.
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Good luck with your scan! Scans are about the easiest things in cancer treatment to endure.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Christine,
Good luck tomorrow. I'll be thinking of you.
We all knew that Sue and Neil were special people when we met them last year. Just goes to show that we were right.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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