#21066 10-06-2006 08:33 AM | Joined: Aug 2006 Posts: 167 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Aug 2006 Posts: 167 | Scott and Lisa how is your father doing?
LisaB
My Dad (Sam) at age 69 dx SCC Base of Tongue T1N2C Well-Diff - March 2006.
35 IMRT rads & 3 Cisplatin chemos - Apr-June/06. Nodes shrunk 50% Dr's suggest ND. Negative PET - he declined ND.
March/07 Had Bilateral ND. No Cancer!! Doing Well!
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#21067 10-08-2006 01:15 PM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Very interesting conversations about the Amifostine. I've been on it about 4 weeks now. Preparing for my last Cisplatin treatment this week and not looking forward to the two combined again. I handled the Amifostine very well the first three weeks. Then, last week I started really getting ill about an hour and half after treatment. Not sure if the Amifostine is the root cause or not, but if it saves tissue I'm sticking 5 more shots out!! Thank you all for sharing.
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 ****
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#21068 10-09-2006 04:23 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 | Steve, I didn't have Amifostine but i did have 3 cisplatins and concurrent 35 IMRT. The first cis went fine. my nausea started after the 2nd and lasted almost 2 weeks post tx.
Hang in there, you can do it !!!
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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#21069 10-18-2006 10:26 AM | Joined: Aug 2006 Posts: 13 Member | OP Member Joined: Aug 2006 Posts: 13 | This is Lisa-- Dad has really had a rough time of it. Even though he has been off the Ethyol, his is still battling nauscia all the time. We have found that a cocktail of Compozine, Reglan and Zofran, along with a .5 injection of Adivan is the only way to get him through his radiation treatments without vomiting. He is also on Zoloft for the anxiety and today, we just upped his pain patch. You know, you read and hear about what a tough road it's going to be, but you never really understand it all until you are there in the thick of it. Between me, my brother, mom and sister, we are with him from 6:30 a.m. until about 10:00 p.m. We are concerned about him while he is on the Adivan, especially getting up to go to the restroom and walking for exercise. He has already had a fall and bumped his head on his bead, and his thought process isn't clear. Today, he hit the halfway point of his protocol, so it's all downhill from here. Starting to see that glimmer of light at the end of the tunnel.
Steve F., I am really glad that you have been able to tollerate the ethyol. I really hope it helps in preserving your healthy tissue. I hope the last 5 shots go well for you. :-) | | |
#21070 10-18-2006 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 | Lisa, all or most of us had nausea problems. Some, like me, were probably worse than others. I battled nausea until almost 2 weeks after tx ended. The most important thing (one of) is to make sure you keep him hydrated and fed. Also watch out for contispation. None of us would want to relive our tx experiences but we made it through and he needs to understand that. We aren't superpeople either. HIS GOAL NOW IS TO SURVIVE THE TREATMENT.
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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#21071 10-18-2006 11:38 AM | Joined: Aug 2006 Posts: 167 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Aug 2006 Posts: 167 | Hi Lisa,
Boy it sounds like your father is having a rough time. I'm glad he has a lot of support. Is he home or in the hospital?
Just keep reminding him and your family that it does get better eventually.
Best wishes!
My Dad (Sam) at age 69 dx SCC Base of Tongue T1N2C Well-Diff - March 2006.
35 IMRT rads & 3 Cisplatin chemos - Apr-June/06. Nodes shrunk 50% Dr's suggest ND. Negative PET - he declined ND.
March/07 Had Bilateral ND. No Cancer!! Doing Well!
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#21072 10-27-2006 04:28 PM | Joined: Aug 2006 Posts: 13 Member | OP Member Joined: Aug 2006 Posts: 13 | Hi, This is Scott, thought I would give my take on things. Lisa is right, it has been tough for my Dad Thanks to my mom and my sisters, he has someone there during the doctors rounds and his radiation treatments. I follow up at night, being unable to be there during the daytime hours. It's hard to see him suffer - his throat ,oral cavity and neck are raw and sore, but he has kept a good attitude throughout and is focused on his drug and treatment regimen. It has been frustrating for my family because Dad is their only "patient" and they focus all their attention on him. The doctors and nurses can't match that, obviously, and sometimes mistakes are made. Regardless, I am happy the way things are going - he is right where he is supposed to be right now, uncomfortable as that may be. Thanks again for all your support! | | |
#21073 10-27-2006 05:00 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Hi Scott,
Speaking as a nurse I think it's great that your Dad has his own private duty team who care only about him. That support cannot be dulicated and don't underestimate how much it is helping him keep that positive attitude. It does sound like he's right where he should be at this point unfortunately. There were days when we couldn't see he'd ever be able to eat again or have taste or be pain free or that the nausea would end. Some of his symptoms got worse after the treatment ended but I want you to konw that it did get better. One day Jack woke up and didn't feel lousey and he started coming back to our "new normal".
This too shall pass, and how lucky he is to have such a caring and involved family.
Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#21074 10-29-2006 10:05 AM | Joined: Aug 2006 Posts: 13 Member | OP Member Joined: Aug 2006 Posts: 13 | This is Lisa again--Entering week 4 of the 5 total treatments. They warned us that, for some reason, week 3 is just emotionally the hardest to get through...boy, were they right! This week, we see the light at the end of the tunnel and spirits are much higher. And you know what David...you are absolutely right. Just do what you gotta do to get through the treatments. I'm so thankful for all the input from all of you who have gone before us...it has been most helpful. God bless you all! | | |
#21075 10-30-2006 08:22 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 | Lisa,
I didn't come out of that tunnel until the 3rd week after TX. So don't get discouraged if things get worse before they get better.
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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