| | Joined: Mar 2014 Posts: 25 Likes: 1 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2014 Posts: 25 Likes: 1 | I have been on the forum getting information over the last few weeks and am now finally getting around to introducing myself. My husband was diagnosed a few months ago and is past his surgery and just starting treatment. This is a terrifying ride but I am hopeful we will get through it, especially with help from friends, family, and others who have been throught it. I'm glad to have this place to come to to see how others are coping with this and to get advice. I am grateful for all the posts I've read so far and for all that I will learn from being part of this group. Thank you all for your help and wisdom in advance.
Randi
Spouse/caregiver to my husband:
Age 48 @ diagnosis
HPV+ SCC Stage IV diagnosed 1/14
Primary site unknown
Met to neck lymph node; 2" tumor resected 2/13/14
Completed 7 Cisplatin weekly sessions and 35 daily IMRT sessions 5/6/14
PET scan clear 11/14
CT clear 10/15
CT clear 10/16
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Welcome. Read up on what to expect if you haven't already. Hopefully he will do okay. It's not fun but you will get through it. 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
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | That was me in 2011. Running a half marathon this weekend. It's tough but doable. You're in the right place for good info and support!
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF, Randi! Im sorry you have the need to use our group, but Im happy you have found us. You have found the best place for info and support for everything to do with OC.
Please feel free to ask questions. We will help you as much as possible.
Best wishes!
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Welcome, Randi!
It would be a good idea if you could convince your husband to join, or to at least read the intro threads. But in any event, we are all glad to have you (and him, should he care to join also.)
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hello Randi - welcome to the family. It's normal for patients to get lots of support from family members and friends. What is often forgotten is that caregivers need support too. That's where this family comes in, a lot of our members are caregivers, so we know what your needs are too.
If you haven't already, get yourself a spiral notebook and dedicate a page to questions you want to ask each of your doctors (if you have more than one). What you read here on the forum will also generate questions you want to get answered. And lastly, don't forget the nurses, they often give the best answers of all to questions as they are often times more understandable than the doctors.
Hang in there, you have a wild ride coming up while husband goes through treatment. Sometimes it will be tough, sometimes easier, but we will be here for you every step of the way.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Mar 2014 Posts: 25 Likes: 1 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2014 Posts: 25 Likes: 1 | I'm so grateful to all of you for your warm welcome and look forward to staying involved in this group!
Randi
Spouse/caregiver to my husband:
Age 48 @ diagnosis
HPV+ SCC Stage IV diagnosed 1/14
Primary site unknown
Met to neck lymph node; 2" tumor resected 2/13/14
Completed 7 Cisplatin weekly sessions and 35 daily IMRT sessions 5/6/14
PET scan clear 11/14
CT clear 10/15
CT clear 10/16
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