#48291 06-07-2007 06:46 PM | Joined: Mar 2007 Posts: 18 Member | OP Member Joined: Mar 2007 Posts: 18 | Hi Folks, Pat finished her Erbitux & IMRT regimen on 5/2/07 had her followup PET scan on Monday. We were expecting that it might be a little too early and there would be some uptake due to inflammation. Well, we were pleasantly surprised when the Rad-Onc said the PET results were "completely negative" with not even a hint of uptake found anywhere in my sweetheart's body. The Rad-Onc indicated he now felt Pat was in the 90% five-year survival range and outlined the followup PET/CT plan going forward. We talked to the kids this afternoon and they were ecstatic. On the other hand while I know that Pat and I should be doing backflips or something, we both just took the news in stride and an attitude of thankfulness. I imagine the impact of good news like this may actually settle in, but for now I almost feel like we've become grizzled veterans who have been in the trenches and become a little shell shocked. Anyway, it was obviously great news and we Thank the Lord for His Grace in our lives. Pat still can't eat anything, but with good news like this the time it takes to get over the remaining side effects should seem to go much faster. The information and support here at OCF has made an enormous positive difference and Pat and I extend our thanks to all. Our prayers continue with all our friends here. I will continue to visit OCF as we go forward. Thanks again to all. God bless. Walt
------------ CG to my wife Pat. SCC base of tongue. Dx 2/07 - T2N3bM0. Single lymph node dissection 2/07. Tx started 3/07. Expecting 8 rounds of Erbitux and 30 to 35 rounds IMRT radiation when complete. Trusting the Lord no matter what.
| | |
#48292 06-08-2007 02:02 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 | Walt,
Great news and tell Pat how happy we all are with her happy news.
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.
| | |
#48293 06-08-2007 03:16 AM | Joined: Feb 2007 Posts: 168 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2007 Posts: 168 | Great news Walt! I'm so glad to hear this. You guys hang in there. The side effects will subside slowly but surely. I'm just a few weeks ahead and I can tell a difference from 5 weeks post tx. I am just so glad to hear your good news. Lee
Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you. Lee
| | |
#48294 06-08-2007 03:53 PM | Joined: Mar 2007 Posts: 18 Member | OP Member Joined: Mar 2007 Posts: 18 | Hi David and Lee, What should we expect as far as Pat's ability to eat solid food by mouth? I know everyone's different but what was your experience? Thanks.
Walt
------------ CG to my wife Pat. SCC base of tongue. Dx 2/07 - T2N3bM0. Single lymph node dissection 2/07. Tx started 3/07. Expecting 8 rounds of Erbitux and 30 to 35 rounds IMRT radiation when complete. Trusting the Lord no matter what.
| | |
#48295 06-09-2007 01:10 AM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Hi Walt & Pat; Congratulations on the success. As far as eating solid foods, you're correct, everyone is different. Coming out of treatment I didn't even want to open my mouth. I had a tough time with even water during my last week of treatment and the first couple weeks post treatment. I was hydrated almost daily through my port for a couple of weeks. Then all of a sudden it started improving, less pain and more "baby steps" with liquids. I did have a PEG tube which was my 'best friend' for a couple Months, but I started with eggs, jello, snack pack puddings, and oatmeal. It was ironic that I could eat oatmeal with milk, but couldn't handle milk any other way (even with cereal) as it burnt my mouth upon entry. Within a few weeks this improved and I was able to eat cereal which sat and softened in milk (still couldn't drink the milk though) and everything required lots of water to wash it down. From about 6 weeks on I really stretched myself, trying new and different things daily. Up until a few weeks ago most meats were too dry except in small quantity (great for my waist line-LOL) and acidic foods would burn a lot (tomato based products especially) The Dr.'s encouraged the experimentation, which helped keep my jaws and throat working as well. To this day, I still revert back to the "comfort foods of 6 Months ago (lots of eggs and cereal) but I am now eating almost anything I please, with the exception of very spicy stuff (which I used to love). I still must keep plenty of fluids to wash it down towards the end of the meal, but my RO is very pleased with how much saliva production I have regained. I am even eating bread at this point, although some types aren't too easy to deal with. My RO was ecstatic about the bread thing. Chicken has always been a favorite, but the white meat tends to be dry and stringy compared to dark meat, so if attempting chicken that is my recommendation (I still have a tough time with chicken breast). Experiment away and don't back off. You will soon surprise yourself. Talk on this board as well. Your friends and supporters here will help guide a motivate you.
Best wishes, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | |
#48296 06-09-2007 08:53 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | I am so happy for you both. good luck in the future
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | |
#48297 06-10-2007 06:52 AM | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | That is great news, and an inspiration to those of us in the middle of treatment. Enjoy!!! Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | |
Forums23 Topics18,170 Posts196,930 Members13,105 | Most Online458 Jan 16th, 2020 | | | |