| | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | Hey All, Been keeping up with you all pretty much every day - so glad you're turning a corner Nate and that your news turned out to be so good Angelia! At this point, I've just finished 2 Erbitux, 1 cisplatin and taxotere, and 6 IMRT's and knowing all that I know from reading all of your experiences I am still struggling with how long and bumpy the road ahead is - definitely overwhelming! Tomorrow is my last day of work - it took me quite a while to realize that I wouldn't be working throughout treatment! Looking forward to really focusing on the treatment now and staying as well and strong as I can. Anyways, just wanted to thank you all for the kindness and support you extend to eachother every single day - reading about your experiences has prepared me for the good, the bad, the ugly and everything in between. Thank you - I know I'll be looking to you all for wisdom and support as the side effects build. Jennifer
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Jennifer,
just try tol take it one day at a time. Some have bumpier roads than others. Try not to speculate on how things are going to be in the future, except, that you will be cancer free when its all said and done.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | 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 | Jennifer,
Why are you stopping work at this stage of your Radiation? I was like many who was able to work fairly well until about the 4 week of my rads. Heck some here worked all the way through but some experienced problems sooner than me. Just wondering. As Gary says this Tx can affect all of us differently so lets hope who are one of the "blessed ones". Regardless of how it affects you we will be here for you 24/7.
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: Nov 2010 Posts: 167 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | Hey David,
I have swallowing problems as a result of my prior surgeries and so the negative effects of rads are hitting my swallow especially early. Also, my job involves working with patients with bad bugs which I need to limit my exposure to. I am hoping to be one of the "blessed ones" - hoping for the best and preparing for the worst!
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | Joined: Jun 2010 Posts: 87 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 87 | Jennifer,
I was glad to see your post as I've been wondering how it is going. Keep your positive attitude! I don't blame you for wanting to stay away from the patients with bad bugs!
Between what I had read on this forum and what my RO had told me prior to starting the RT, I was really expecting to be miserable. However, I had RT number 24 today, and, except for a few days during week 3 when I had a bad bout of probable yeast esophagitis, I have not had to start taking narcotic pain meds, although I am starting to reconsider at this point due to tongue and throat pain. I really have not felt that tired until the past few days either. The main problem has been skin irritation, which has been pretty bad. I have been trying to really push the protein and can't help but believe that helps.
Keep us posted!
Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | HI... I am just starting my journey with this disease. I hear your stories and am saddened and inspired. Thank you. For the information and hope I get just reading your posts. I hope you all are doing well.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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 | Concurrent Chemo can make a huge negative difference in the way we are affected by this Tx. My second Cisplatin bag which I got after 15 rads really started my rapid decline.
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | My second chemo bag of Cisplatin nearly killed me. They dropped the third one...
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jen, just keep an upbeat attitude like you seem to have. Tell yourself you can beat this stuff and mean it. We are all different regarding treatment and we all suffer some tho. Here's hoping you are smiling more than wincing. LOL Yep it can be tough. If this guy did it anyone can. good luck and keep posting.
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: Nov 2010 Posts: 167 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | Thanks EZ- I like what you said about telling myself that I can beat it and mean it - most of the time I mean it but there are times when I falter and I know I don't believe it in that moment - working on that! Susan - I am so glad to hear that you're doing fairly well with your rads - that's wonderful news! My RO nurse recommended Calendula Salve - I just picked it up today - it's been amazing on my Erbitux rash and she said it works really well for radiation burns. Second Cisplatin coming on board in the morning - here's hoping it doesn't kill me!!!  Just curious - I'm seeing an overwhelming number of folks here with SCC of the Left side of the tongue - I'm not sure I've even seen one person with right side involvement - any "Righties" out there?
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
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