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Update and Encouragement #197723
12-25-2018 06:03 PM
12-25-2018 06:03 PM
Joined: Feb 2017
Posts: 67
S
sooner Offline OP
Supporting Member (50+ posts)
sooner  Offline OP
Supporting Member (50+ posts)
S

Joined: Feb 2017
Posts: 67
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
Re: Update and Encouragement [Re: sooner] #197724
12-26-2018 07:22 AM
12-26-2018 07:22 AM
Joined: Oct 2012
Posts: 1,055
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,055
Toronto, Canada
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.
Re: Update and Encouragement [Re: gmcraft] #197726
12-27-2018 09:32 AM
12-27-2018 09:32 AM
Joined: May 2018
Posts: 23
Ontario, Canada
E
embishop Offline
Member
embishop  Offline
Member
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Joined: May 2018
Posts: 23
Ontario, Canada
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.
Re: Update and Encouragement [Re: embishop] #197730
12-27-2018 08:35 PM
12-27-2018 08:35 PM
Joined: Aug 2018
Posts: 191
C
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 191
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 56 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.
Re: Update and Encouragement [Re: sooner] #197789
01-13-2019 01:57 PM
01-13-2019 01:57 PM
Joined: Jun 2007
Posts: 10,225
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,225
PA
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!!!


Christine
SCC 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 smile
Re: Update and Encouragement [Re: sooner] #197806
01-18-2019 08:05 PM
01-18-2019 08:05 PM
Joined: Sep 2018
Posts: 27
V
VirgoMomof3Boys Offline
Contributing Member (25+ posts)
VirgoMomof3Boys  Offline
Contributing Member (25+ posts)
V

Joined: Sep 2018
Posts: 27
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

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