| Joined: Jun 2019 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2019 Posts: 62 | Hi Barry, Been following your treatment posts and happy for you that your done. You and Ms. Dizz_ey are such fighters. There was a job to be done and you both pushed through it like champs. You both are inspiring and encouraging for our members. Great work! Congrats to you Barry. High five!
SSC Lt sublingual tongue; Age 62 Positive biopsy 20June2019 Staging done 2 Jul : Stage 1 Quit smoking 15 years ago; not a drinker; no HPV Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up. Partial Glossectomy 22Jul2019
| | | | Joined: Aug 2019 Posts: 57 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2019 Posts: 57 | Thank you Dizzy. Just when things are getting challenging, you can count on the voices from this forum for encouragement.
Even though doctors warned me that side effects would get worse after treatments ended, a little voice deep down didn’t believe it. Stupid. The last week - really the time after the last cisplatin treatment, have been the worst. Really sore throat, nausea (very little with the first two treatments), fatigue and weight loss. I am taking everyone’s advice and resting as much as possible and just enduring this (miserable) phase.
I think I have been very lucky with respect to side effects so far so maybe this is just a little “evening up” of things. I’m going to try the smoothie idea a little more, and thanks again.
Preliminary diagnosis of SqCC at base of tongue August 2, 2019. Biopsy surgery on August 15 Confirmed sqcc from biopsy Aug 20 - hpv type 16 33 radiation treatments ended October 25, 2019. 3 (large dose) cisplatin treatments.
| | | | Joined: Aug 2019 Posts: 57 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2019 Posts: 57 | Thanks Mokie. For some reason it is encouraging that there is a support group out there in cyberspace cheering each other on to recover from this horrible disease.
Preliminary diagnosis of SqCC at base of tongue August 2, 2019. Biopsy surgery on August 15 Confirmed sqcc from biopsy Aug 20 - hpv type 16 33 radiation treatments ended October 25, 2019. 3 (large dose) cisplatin treatments.
| | | | Joined: Aug 2019 Posts: 57 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2019 Posts: 57 | Hey Gloria. Thanks for that. Funny, I was looking into the flu shot just yesterday. I thought that with the medication I am on that I should run it by my doctors to make sure the flu shot wouldn’t interfere with anything else I’m taking. Radiation oncologist said no problem, still waiting to hear from medical oncologist and endocrinologist to make sure - then I’m off to get one. I have also tried to avoid large gatherings, etc. To reduce exposure to potential germs. Kind of a drag, but not really feeling up to a lot of socializing at the moment anyway.
Preliminary diagnosis of SqCC at base of tongue August 2, 2019. Biopsy surgery on August 15 Confirmed sqcc from biopsy Aug 20 - hpv type 16 33 radiation treatments ended October 25, 2019. 3 (large dose) cisplatin treatments.
| | | | Joined: Aug 2019 Posts: 57 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2019 Posts: 57 | Thanks Nedra. Good advice to be patient waiting for relief.
Preliminary diagnosis of SqCC at base of tongue August 2, 2019. Biopsy surgery on August 15 Confirmed sqcc from biopsy Aug 20 - hpv type 16 33 radiation treatments ended October 25, 2019. 3 (large dose) cisplatin treatments.
| | | | Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 |
You're welcome anytime. It is nice to know there is someone encouraging you and cheering for you.
My 2nd dose of cisplatin was awful. I had 2 nights of full body sweats, 1 night where I was sick and spent the whole night wanting the world to end as everything hurt. I'm not having the 3rd dose. I can't go through that again.
I also had read about things getting worse after treatment, but didn't count on things to ramp up when I'm so close to the end. The back of my throat is so sore that that it's also sensitive. When I get too much saliva and don't swallow in time, it burns and makes me cough. It's even worse when I'm trying to sleep.
I reckon I start feeling better in December
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
| | | | 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 | Barry, radiation is no walk in the park, that’s for sure. I’m glad you are now out on the other side and should start to feel better in a couple of weeks. You should be okay with the flu shot. John’s MO, ENT and family doctor all reminded him to go get his flu shot because if he caught it, he would be “thrown for a loop” as one of them said. Staying away from crowds is a very good idea. Your immunity has been compromised and you have to give it time to recover.
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: Aug 2019 Posts: 57 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2019 Posts: 57 | Hi everyone. I am two weeks post radiation and chemo treatments tomorrow. Still hanging in there - a little fatigued at times and still having a tough time reintroducing solid foods.
Since I’m still losing a bit of weight, yesterday I was resolved to start eating solid foods despite a sore mouth and throat and, really, no appetite to speak of. I started with a scrambled egg and a half slice of toast. Mistake. Shortly after consuming a couple of bites, I was (sort of violently) ill.
Have others had the same difficulty reintroducing solid foods? It was a bit rattling.
Preliminary diagnosis of SqCC at base of tongue August 2, 2019. Biopsy surgery on August 15 Confirmed sqcc from biopsy Aug 20 - hpv type 16 33 radiation treatments ended October 25, 2019. 3 (large dose) cisplatin treatments.
| | | | Joined: Mar 2018 Posts: 34 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2018 Posts: 34 | Two weeks post radiation and introducing solid foods...you're a rockstar. I was on shakes forever!! Be patient with yourself. I lost weight for several months post rads but now have gained it all back a year later.
Linda
Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection. Now T1N1M0 Surgery 2/16/18 at UAB. 30 Proton Therapy Treatments Cisplatin Chemotherapy
| | | | Joined: Sep 2019 Posts: 23 Member | Member Joined: Sep 2019 Posts: 23 | Hi Linda—did you find any issues with dairy based shakes? My husband is finding dairy products have a metallic taste.
Spouse of patient 7 weeks post radiation as of 9/30/19 | | |
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