| Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Ditto for me and nausea - 3 months worth post-RT, 24 hours a day, and I didn't even have chemo. Gloria, my thoughts are with John and with you. I'm sure he's glad to have you on his side!
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | 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 | Maybe it's a David thing?
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: Dec 2012 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | Had my first radiation today, chemo starts Wednesday - I'm with Tina - I want to go to my happy place. I wonder if putting a few glasses of wine in through my PEG tube would do the trick? To all the contributors, thank for the great great information. How about proper shaving utensils? I've had a beard for the last 35 years or so. Electric or are blades OK?
SCC Started in the right tonsil they think, T1N2bM1 HPV+ Lots of nodes involved including some near the carotid - didn't come out during neck dissection Distant Met's - one in the mediastinum, some suspicious stuff in the lungs Radiation 70 Gy in 35 fraction Cisplatin - 3 Stereotactic rad to the mediastinum Clean PET Apr 13 Clean PET Aug 13 Clean PET Dec 13 Clean CT with contrast Mar 14 Clean CT with contrast Sept 14 Clean CT with contrast Feb 15
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 8 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 8 | My husband's RO recommended an electric shaver as a razor will be too harsh on the skin. Please make a point of drinking at least 2 liters of fluids everyday to stave off dehydration. It makes a lot of difference to how you feel when ou are well-hydrated.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Waldeau, by the time I was finished with rads I didn't need any kind of razor. Had a few wisps of mustache and goatee left. After that I just let it grow and within a year or so had as much facial hair back as I was going to get, and I've left it as a beard. Ok, kind of a beard...
But if you want to shave I agree that an electric would be better.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Oh, and I think we Davids are our own weird little subset of forum posters.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | gmcraft - Thanks! I just noticed today that I'm drinking less than ordinary. Still having some rumblings from the PEG tube installation I think but I'll keep on it. They've actually scheduled regular fluids infusions as a part of the therapeutic plan but I don't want to rely on that.
David2 - Yeah - it's going to be a shock to a lot of folks when they actually see my face. I'm not even sure I'll recognize me. I was thinking of a pre-emptive shave to maybe make it easier to apply the various lotions and potionsI saw described for skin care.
Again, thanks to whoever started this thread and to all that contributed from their experience.
SCC Started in the right tonsil they think, T1N2bM1 HPV+ Lots of nodes involved including some near the carotid - didn't come out during neck dissection Distant Met's - one in the mediastinum, some suspicious stuff in the lungs Radiation 70 Gy in 35 fraction Cisplatin - 3 Stereotactic rad to the mediastinum Clean PET Apr 13 Clean PET Aug 13 Clean PET Dec 13 Clean CT with contrast Mar 14 Clean CT with contrast Sept 14 Clean CT with contrast Feb 15
| | | | Joined: Aug 2012 Posts: 56 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2012 Posts: 56 | I don't know if wine will help, but for my first few treatments I put 1mg of ativan under my tongue to dissolve about 20-30 minutes before the treatment, and that definitely helped. Like many I had my head restrained by a rigid mask---very necessary but very distressing at first--and the ativan helped me get through those first tx's, along with positive imagery and relaxation exercise (slow, deep breathing especially; can help with nausea also).
Responses to tx are highly individualized. The thick mucous and taste changes seem pretty universal, but just when it happens, how bad it is, and how long it lasts does tend to vary. Do keep swallowing, and stretching your mouth--don't forget that no matter how bad you feel, as you will later end up not be able to open your mouth fully if you don't. Expect possible internal and external burns, like sunburns only scarier looking, but they get better; my neck looked awful, like the worst sunburn ever, the last week of treatment, peeled completely, but the aquaphor really helped and I have no scars. You really have to keep after the regimen your docs and therapists recommend, to be diligent about it. I would tend to forget these but my wife kept after me (I called her the Boost nazi due to her efforts to keep me drinking my damn Boost), and it's what I needed! Best of luck to you, and do you this forum--it's great for information and support. You are far from alone, there's a big club of oral cancer survivors out there.
Ed H, NE Ohio SCC BOT with lymph node involvement, HPV+, diagnosed 7/12 Radiation and Cisplatin
| | | | Joined: Oct 2012 Posts: 5 Member | Member Joined: Oct 2012 Posts: 5 | How long does the nausea last from Cisplatin. I am having a hard time with it. I am on 3 different meds and have a feeding tube now. Everything makes me nauseous except water and an occasional hot tea. Any suggestions on when I will see the light at the end of the tunnel. I have 10 more rad treatments.
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 8 Assistant Admin Patient Advocate (1000+ posts) | OP Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 8 | Have you tried flat ginger ale with ice in it? John finds it helps settle his stomach. When you drink your tea, can you stomach having table cream or half and half in? The dietitian recommends it because it helps with the calory count.
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. | | |
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