| | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,294 Likes: 1 | Well today, my journey from what is it and what do we do now shifts to go do it.
My first cycle of a 3 week chemo cycle of TPF started today. Took most of day to get all the premeds in, the saline, then each drug, them more saline, etc. Finally the f-FU packed was connected and how I get to drag this around for the rest of this week.
At home now, ate fine and zero side effects. Have 4 bottles of various drugs to take for side effects. Feeling good as they put Ativan in the drip which made me just dozy enough to rest and just get up to pee.
one down - lots to go
don
Last edited by donfoo; 01-29-2013 01:03 AM.
Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Good luck the rest of the week.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Congrats on getting that one behind you....don't ever have to do that one again!
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Yeah! Congratulations on getting started. Doesn't it feel good to no longer be just waiting but actually starting treatments? I know that is how John felt. We had a calendar that we printed out on the refrigerator and crossed off each day. John also had a notebook that he filled out each day with what meds he took and at what time and he also documented all his nutrition and hydration intake. Good luck!
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Yay Don!! Now you are battling this thing. The game is on and you will win. We are all here for ya, but you know that already!!
Eat big!!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Best of luck! 
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: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,294 Likes: 1 | Thanks all. Went in today for a 5-FU exchange. All going very well, zero nausea so far, just pretty fatigued. Don
Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
| | | | | Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2003 Posts: 122 | Hi Don
Glad to hear all went well! Be glad you have the "fanny pack" as years ago when I was on 5-fu I was camped out in lovely Grady Memorial Hospital in downtown Atlanta for the whole WEEK!
AAAAAAAAAHHHHHHHHHHGGGGGGGGGGHHHHHHHHHH!!!!! >:-O
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | I had to stay in the hospital too for a week in 2009. Seems now some do as out patient, and others may not. Keep up the fight, Don.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,294 Likes: 1 | Some treatment options much better now as the 5FU pack is a tote device but not helping the fatigue until today. Feeling much better. Yesterday was fatigue to tired, today getting going again.
Thanks for the thoughts. Don
Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | So glad to hear you are coping. Induction chemo can be very hard. Alex used to say that there was no word in the English language that could describe what he felt but fatigue was just so inadequate. If you have got through the first 5 days, then hopefully you are on the improve till the next dose. Alex used to be very very sick half way through the first week, start improving during the second and approached feeling "normal" during the third.
Alex also discovered an added bonus of chemo day in that he was properly hydrated on those days because of the cisplatin which made him feel quite well (albeit short lived). We learned the value of hydration very early as a result. Unfortunately, getting the idea of nutrition through to Alex was a bit more problematic. Alex got very, very sick and I would implore you to keep both hydration and nutrition up as difficult (and some days impossible) as it may feel.
Just a thought re the 5FU pack: Alex refused to have anything to do with the fanny pack (a cute (I thought) little denim number made by the volunteer group). He coped better with fleecy lined track pants (?sweat pants) with side pockets. the cassette sat neatly and snugly in the pocket. Having the cassette to the side made it easier to sit and lie down, Alex said, and didn't get in the way so much.
KLO
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 51 | Don- Paul's motto was one day at a time and if you act happy, eventually you'll FEEL happy. It really worked. Your frame of mind is a powerful tool as to how you feel. Whatever the symptom, there is something to help. It can be medications or other advice from this website. Many things work for some but not others. The secret is to find out what works for YOU. It won't be easy but I honestly think if Paul could make it through the treatments, anyone can. He just had some random, unfortunate luck. Best of luck to you. Please feel free to contact me as you go throughout your treatment.
Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
| | | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,294 Likes: 1 | Thanks all for the support and kind words and advise. One week since start of cycle 1 of TPF induction and I am finally feeling bits of goodness among the blah times.
I need to listen to Paul's motto - one day at a time. I let myself get ahead of where I wanted to be and where my body was willing to go so it bummed me out more than just take it as it comes.
I'd like to image it better from here until the next cycle but I guess I need to learn - one day at a time. :-) Don
Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Exactly Don.
One day at a time.
You can get through this.
Be kind and gentle to yourself.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Ditto to the above. Hugs!
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
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