| Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | %&^*$@#_)(%#^&*()_)!!!
And that's all I have to say bout this...
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
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Charm, I'm so, so sorry you have to go through this battle yet again. It's just not fair but life unfortunately isn't fair at times. I fear a recurrance with John and how I would handle it. I know so much more now than I did 3 years ago about this horrible disease but that can sometimes be a scarey thing also.
As a caregiver the only thing that kept me sane and calm was to feel like I was actively doing something and in the fight with John not just standing on the sidelines. John has never been on this message board and probably never will. He is a "private" person and would get very upset with me for "sharing" our lives with strangers. You strangers are now part of my extended family and a lifeline for so many.
For most of us females we have to talk about things and share our fears and concerns. Let Bev talk when she needs to and cry when she needs to.
YOU WILL BEAT THIS!!! We are all standing here fighting along with you! All My Best Always! Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Charm,
I am so sorry that you have a recurrence. I second what Wanda said. In addition, Clark also does not come on these boards and so many things I have learned about this cancer, and the wonderful people I have met here are so special. There are many times I want to say something regarding a post or person from the boards but I have to be careful as Clark would find the info upsetting. The fact that you and Bev share so much of your experience with others is a gift to us all. I always look for your posts. I love your wit and wisdom, your sincerity and compassion.
I wish you did not have to endure this insult to your body and psyche. I pray for you and Bev and send you love and healing vibes. We will rally around you and fight with you. HUGS!
My best to you- Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | So sorry to hear Charm....you are in my thoughts!
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | It does seem that when both members of the "survivor couple" come on this forum, it is more the exception than the norm and usually it is either the caregiver or the survivor. In my own experience, my son only came on very briefly, saying it was too worrisome for him to hear about what others were going through. I didn't push it because he was already suffering depression and in therapy for that and I so wanted for him to be able to get through his surviving the best way possible for him. For me, the fact that he did not come on here was an advantage in that I could express myself honestly, I could cry and be frustrated, knowing others would understand and I didn't have to worry about how I was holding it together, hiding my fears from him. He did get lots of help through all the posts that I made copies of for him to read. Whatever works for each of us is what helps us all get through this journey. Charm - you know we are all with you and Bev in this latest fight. Sending hope and prayers and positive vibes your way.
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.)
| | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2011 Posts: 117 | My dear Charm,
Sorry it has taken me several days to compose a post. I seemed to be at a loss for words about your latest news. IT SUCKS...
I don't know anyone who is better prepared for another round in this battle. You will do it and we will all be behind you holding you (and Bev) up. You know the drill, you know what to watch out for, who to get meds from, how to keep hydrated, etc. And if you falter, you have Bev there to keep you on the straight and narrow.
If Bev would like to chat with my caregiver husband, by all means he would be honored to help out. Eric Statler will tell you that Ted knows all about the caregiver role.
In the meantime, you are both on my mind and in my prayers.
Ingrid
DX 12/6/10 of T3 SCC Tongue. Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear. Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | I have been reading this thread plus your previous one from last Friday and like many of us was shocked at your news. Your posts have always been read worthy given your knowledge, well researched posts, empathy and also your wonderful sense of humour. My very best wishes to you and Bev as you fight this dreadful disease again. We are all here to follow your journey with you and know that with your fighting spirit and your wonderful carer you will overcome this again. Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Charm,
You know that you are my Hero. I have a hard time adding to what others have said already. I can understand your worry for Bev. My Allison has been through the ringer time and time again and has never complained or freeked out (at least not in front of me).
Many a time I have sat and listened while some doctor gave me rotten news, all the time looking at that girl on the chair next to mine with her chin up, putting her hand on mine and letting me know in her unspoken way that she would be there for me whatever may come. How can we repay these wonderful women for all they do and all the pain and uncertainty they silently endure?
Anything, and I mean ANYTHING, just give me a call. If Bev wants to talk with Allison and compare notes or just rail against this dreaded disease, let me know and I'll have my girl call your girl.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | I am so sorry to hear this Charm.
Karen
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | NO!!!!!!!, sorry I have not been on in awhile. Do not have Internet acces except for phone and that is limited. I will definitely keep you in my prayers. I am just shocked at this news. I will try to get back here more often.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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