#47288 09-29-2006 08:04 AM | Joined: Jul 2006 Posts: 14 Member | OP Member Joined: Jul 2006 Posts: 14 | Hi everyone, My husband is now almost halfway through his treatment (13 IMRT sessions out of 30 total and 1 carboplatin) and has suffered very little side affects as of yet. Every day I wake up wondering if this is the day things are going to turn bad and thus far we have been very blessed. He has put on 5 lbs so far during treatment because he shoves food in at every moment that he can so that when things do get worse he has some weight to spare. The only real side affect he has yet is that he has a somewhat dry mouth and his tongue is a little sore. We've switched him to softer foods so as to keep from aggrevating the soreness any more but everything still tastes pretty normal. Just wondering if there are others out there that went this long without complications and when they should start to kick in. I worry about him everyday especially when I read everyone's stories on this forum. I do consider us blessed though, that we have gotten this far without alot of complications. Every day is a blessing.
Michelle, wife & caregiver of Steve/T1N1M0 right lateral tongue cancer/Surgery 8-3-06/Started treatment 9-13-06 -- IMRT x30 Plus 3 sessions carboplatin
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#47289 09-29-2006 11:03 AM | 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 | I had 35 IMRT's concurrent with 3 cisplatin treatments. I started feeling the effects during week 3. Nausea was the worst because it (no feeding tube) prevented me from downing the right amt of cals and water. Not understanding what was happening to my body I continued to get worse. I would go to the ER and get fluids and try to rebound but it would only last a week or 2 before I would land back in the ER. Nobody could get a handle on the naseau until a week after treatment ended and I had lost 30 pounds did they put a tube through my nose. I had it in 10 days before I pulled it out myself BUT it got me over the naseau hump and I have recovered greatly since then. I also found Carnation Instant Breakfast VHC which has 560 cals in the same 8 oz size which has helped a lot as well.
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.
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#47290 09-29-2006 01:08 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi Michelle,
As you know, I can't give you any advice in this situation, but just wanted you to know that I'm thinking of you and Steve and glad to hear that things have been going so well.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#47291 09-29-2006 02:47 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Michelle and Steve, the healthier you can stay now, the better it will be down the road. Good for Steve for eating [and hopefully drinking water, etc.] at every opportunity. I would also urge him to get as much rest as possible during rad. therapy. His body will appreciate it. Keep it up- you all are doing well! Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#47292 10-05-2006 06:42 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | I can only speak for my experience, but I felt very little in the way of side efects until week 3, and then it all started to hit. The nausea really took me by surprise, sudden, severe and really difficult to control. I finally spent a couple of days in hospital on I.V. Zoefron and that finally got it under control.
The last 5 treatments (of 30) were the toughest for me. It was really an exercise in endurance. Now, two weeks out from the last treatment, I'm starting to feel a bit better but I suspec it's going to be a while Good luck to both of you ! Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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