#93844 04-17-2009 12:33 PM | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Hi everyone,
It is with my most heartfelt thanks that I post today. You have all been the greatest support group anyone in this predicament could ask for. The info shared by everyone helped me through the most difficult time in my life. Richard sends his thanks to all of you.
After 7 weeks of healing, our lives are settling into the "new normal." Richard is eating and will get the Peg tube out next week. The mouth sores are finally gone and he is maintaining his weight. We are back to our 3 mile walks and a regular routine. He still needs to rest and take it easy, but I feel his recovery has been remarkable.
This week was his follow-up with the Head&Neck surgeon and the RO. They are both very pleased with his progress. He sees the H&N doc in 6 weeks for a check-up and the RO in July, when she will schedule a PET. There is still a small amount of residual tissue where the node was, but neither one of them seemed concerned. We're hoping it will continue to shrink and the body will take care of it.
Whatever happens in the future, we will deal with at the time. For now, we are very optimistic and grateful. We will take each day of life with prayer and gratitude. David, if you read this post, thanks again for your initial advice to gain as much weight as possible. Richard gained 10lbs and that is what he lost. I do believe that's one of the reasons he tolerated the treatment so well. He continued to eat and drink through-out this ordeal, even though it was almost unbearable at times. Everyone's advice about swallowing made a huge impression on him and he can be very stubborn about doing what needs to be done.
I have brochures from Susan and I will be distributing them in our area. If one person derives knowledge and support from OCF it will be worth it. That' about it for now. I will continue to check in to see how everyone is doing....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: 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 | Geri,
I read your post and thanks for the thanks.
Glad he and you are doing well. He will continue to regain his strength but please remember that his recover may take all of 2 years so don't try to rush it. We all did try to rush it but it does take a lot longer than any of us wanted.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | YEAAAAAAAH. That is an inspiring post. I am so glad both of you are doing so well. Time to plan and go on a vacation to celebrate his recovery. You both deserve it. Good news is so nice to hear.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 |
Geri its so nice to hear your positive news. Thank you for posting the update. Keep up the good work and best of luck to both you and your husband in the future.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geri I agree with Christine. We sire were due for good news and this will be hard to top. Congrats to you both and Richard had a fantastic caregiver which is what is needed to kick butt when necessary.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Geri - Great news! Wishing you and Richard the best! It's good to hear good news
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Thanks for all the kind comments. Richard is wondering about getting the Peg tube out. Should he take any pain meds before or do they numb you up a bit?
I think I read somewhere that they just yank it, which makes him cringe! I commented that after all he's been through this should be a good kind of pain, if there is such a thing. Thanks again..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) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Richard doesnt need pain meds to get the PEG tube out. I was the biggest chicken and kept mine longer than I needed it due to the fear of removal. The doc will have him lay down and one big yank and it will be out. The pain is bad for only a couple minutes. Once he stands up he will be amazed at how much better it feels immediately.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | As Christine says this is really not a big deal. Literally a snap compared to everything else. No drugs are needed if things are normal.
Best (from the Bahamas!!)
Cheers
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Just consider that yank a pop of the champagne cork...that is what Bill's sounded like and then afer a few seconds...no pain so it just a momentary unpleasantness although I will confess that I turned my head during the big "PULL." When I looked up immediately after the "pop", Bill was fine and not grimacing so I was relieved.
Congrats on reaching the light...you guys are changed forever in some ways but you made it thru.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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