| Joined: Feb 2017 Posts: 67 Likes: 1 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2017 Posts: 67 Likes: 1 | My husband finished his treatments in April of 2017. I spent a lot of time on this forum when he was in treatment and during the post treatment phase as he had a lot of difficulty returning to eating and maintaining his weight even with a PEG tube. I am indebted to many on this board, especially Christine, for support and encouragement that got me through as a caregiver and advocate. I just wanted to check in let everyone know he is doing so well! I see my signature did not make it through one of the updates but he had Stage 4, BOT. PEG removed early in his recovery. My husband has returned to work full-time, talks, eats most things and has no difficulty maintaining his weight. Don't get me wrong, it is not like before the cancer but life is very, very good and so much better than on the bad days I ever thought it could be. So, for all of you that are in the struggle, please hang in there and know that very slowly, over time things can get better. I often said that to both of us his recovery seemed to move at the speed of a glacier before global warming. We are not patient people. The truth is for most people the recovery just does not move as quickly as we want it to move. The truth is calories matter in recovery. Make it happen. Sending you positive thoughts on your journey. Just wanted to say thank you to OCF again.
Wife to DP. DX SCC BOT 1/31/17 First treatment 2/27/2017 Cisplatin 3 times and IMRT Last treatment 4/18/2017 Clear PET 7/13/2017 PEG removed 8/4/2017 | | | | 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 | Thanks, Sooner, for the update.
It’s indeed very encouraging for those who are in the midst of their treatments to hear your husband is doing so well.
Wishing you happy holidays!
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: May 2018 Posts: 32 Likes: 4 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2018 Posts: 32 Likes: 4 | Thank you so much for posting this. I finished treatment in July and went back to work Oct/Nov but don’t feel at all back to normal yet, or I guess the right way to say it would be I don’t feel settled into a new normal yet. Your post is encouraging for me.
Mouth/tongue cancer dx Feb 2018. Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection. Tumour 2.5 cm, 0.8 cm deep. Histologic grade G3 Poorly differentiated. 3 of 25 lymph nodes involved max size 0.6 cm. pT2pN2b (stage 4a) Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | thank you for the update. I cannot imagine life returning anywhere near back to normal but maybe it will. We are waiting to hear results from a biopsy on Wednesday. If it's still cancerous, I'm sure he will just give up which is pretty close to where he's been at since August.
Best wishes in your moving forward in life!
Spouse of 58 yr old with BOT cancer Stage 4a HPV16 positive 3 chemo treatments cisplantin 35 radiation treatments 7000 cGy former smoker/chewed tobacco for 38 yrs. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | You're welcome!!! Sharing and helping is what we are here for. We're all in this together to help make the entire horrible ordeal as easy as possible for each other. The dark days of OC are some of the worst days Ive ever had. Then an extra long recovery with extremely slow progress on top of it can really make the whole thing even worse. It always goes back to the intake... the better a patient does with their intake, the easier everything is.
Best wishes to you and your husband with everything!!! 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: Sep 2018 Posts: 71 Likes: 1 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2018 Posts: 71 Likes: 1 | Hello Sooner,
Thank you so much for the update. How encouraging!! I guess I stumbled on your message during a good time. I finished my radiation last week and had my first post-radiation doctor appointment today and took a bit of a tongue lashing for losing weight. So your message just reiterates that I need to work harder on my intake to have the calories needed to get through this. Best wishes for a continued happy and healthy life with your spouse!
Laura Age 40 Tongue lesion on left side grew and was hurting in mid-August Dx as squamous cell carcinoma on 9.18.18 Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3 Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor Additional surgery 10.18.18 to remove another cm near where the stray cells were found 33 radiation treatments from Nov 2018 through Jan 2019
| | | | Joined: Nov 2022 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2022 Posts: 26 | Would you mind sharing anything that seems to be lingering? Things that are completely back to normal? Things that are not?
Jdub
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