| | Joined: Mar 2013 Posts: 23 Member | OP  Member
Joined: Mar 2013 Posts: 23 | Hi Nancy,
Sending you positive thoughts and prayers for a clear bill of health next week! As my yoga teacher says, 'Take deep belly breaths" to calm your nerves and I just said to my husband today, "Let go and let God." I know, it's easier said than done.
All the best,
Pamela
Pamela (57) Caregiver to husband Jack (68)
2-21-13 DX BOT SCC T2, left LN's affected, Stage 4, HPV+
3-8-13 PEG, Port for Chemo, Biopsy BOT
3-22-13 Start Cisplatin 1X Wk X 5-6 Wks,
3-25-13 Start Rad 1X Daily, 6X Wk, X 7 weeks, (42 TX)
5-11-13 finished Rad after 39 TX and 6 Wks Cisplatin
| | | | | 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 |
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: 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 | Fingers and toes crossed for Option #1 !!!!
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: Mar 2013 Posts: 23 Member | | OP Member
Joined: Mar 2013 Posts: 23 | Thanks Everyone. Me too, with the fingers and toes! My husband broke down and cried in my arms this afternoon. I wept with him. Then I told him that whatever the outcome, we would get through this and face it together. Now we have our chins up and willing positive!
Pamela
Pamela (57) Caregiver to husband Jack (68)
2-21-13 DX BOT SCC T2, left LN's affected, Stage 4, HPV+
3-8-13 PEG, Port for Chemo, Biopsy BOT
3-22-13 Start Cisplatin 1X Wk X 5-6 Wks,
3-25-13 Start Rad 1X Daily, 6X Wk, X 7 weeks, (42 TX)
5-11-13 finished Rad after 39 TX and 6 Wks Cisplatin
| | | | | Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2013 Posts: 49 | What an awesome TEAM you both are!!
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Pamela, wishing you and your husband the best outcome. I will be sending positive thoughts your way. In the meantime, we still haven't heard from the hospital about the x-ray appointment. We do need a large dose of patience on this long and winding road.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Mar 2013 Posts: 23 Member | | OP Member
Joined: Mar 2013 Posts: 23 | Hi Gloria and all,
Well, Jack had the procedure on Friday. The good news is it worked! Surgeon was able to open enough for him to swallow. He is sipping water and ginger ale and feeling pretty good except for very sore throat due to the procedure. There isn't bad news, but it's something I am trying to put out of my mind. The surgeon said that it was easier for him to open than he thought it was going to be which raised a red flag for him that something else was going on. Yikes! He said there is a lot of scarring from the radiation and some scarring on the voice box which poses a risk of slamming shut, which would mean there would be nothing else to be done and Jack would be reliant on a feeding tube the rest of his life. My step son and I decided NOT to tell Jack that part of the news as we want him to "think positive" and it has so lifted his spirits! He continues to have horrible mucositis and continuing to spit, but he said he's swallowing fine. So.....surgeon said the next 3 weeks will probably be the deciding factor and he's to have another swallow test in 3 weeks time to see how it's progressing. He's on only liquids for a month and then we see surgeon for follow up end of August and to have PET CT Scan. So, I won't allow myself to be down and think negative thoughts. It's all positive and I'm visualizing Jack healing and staying "OPEN" and eating some solid food in the near future.
I will keep you posted.
Let me know what progress your husband is making, too Gloria.
Pamela
Pamela (57) Caregiver to husband Jack (68)
2-21-13 DX BOT SCC T2, left LN's affected, Stage 4, HPV+
3-8-13 PEG, Port for Chemo, Biopsy BOT
3-22-13 Start Cisplatin 1X Wk X 5-6 Wks,
3-25-13 Start Rad 1X Daily, 6X Wk, X 7 weeks, (42 TX)
5-11-13 finished Rad after 39 TX and 6 Wks Cisplatin
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Pamela, that's good news and let's hope Jack continues to swallow and that his esophagus stays open. John spoke to the general surgeon that he had to see about his gallstones and the doctor basically said surgeons don't like to mess around with the esophagus. Any surgery would require the skills of a thoracic surgeon and is a big deal. His advice to John was to continue working with the gastroenterologist and see what happens. The whole business worries me but I can only take it a day at a time.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 80 | Pamela - I am very glad that the procedure worked for Jack. Did they use the procedure that went both down the throat AND up the stomach or was he able to break through with a one-way dilation?
I had my last dilation a month ago and haven't used my PEG in 3 weeks, so I am hopeful to have it pulled out soon. With that said, I am also fearful of my throat closing again so need to discuss that with my SO/ENT (I see him later today). Fear of recurrance and other issues are running rampant lately so the appointment will be telling.
Best to you and Jack,
Nancy
Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
| | | | | 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 | We all hope for the best. Sounds good so far.
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.
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