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#161986 02-23-2013 05:21 PM
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gpk101 Offline OP
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Hello, all. Got the news this week (that I already intuitively knew) that my taxotere treatment is not working. The doc took one look at my blue/black fingernails, felt the increase in the size of the tumor on my neck and immediately nixed this brand of chemo. He's trying to get me on a clinical trial that includes alimta sp? (not sure-got it written down somewhere) The thing is, though, this drug only helps a small percentage of the patients that take it, and the other drugs still available help even smaller percentages.
Thought I'd come to grips with the reality of this disease-that someday it's most likely going to kill me, but I have to admit, when it finally sunk in, that I'm not ready to go quite yet and NOT like this. (It's become a bit painful and seems to change DAILY) My neck feels like it has a constant charley-horse in it, and the side of my head feels like it had a run-in with a baseball bat.
Anybody had similar and managed to get through it? I've been pretty lucky so far, just hoping it holds out...thanks in advance!


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!

gpk101 #161987 02-23-2013 08:44 PM
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Gordon, Im very sorry to read this post! I had been hoping you were doing ok with everything.

I have not heard of the taxotere chemo you have been on, there could be others who have used this or have knowledge of it. Maybe you will feel a little better now that you are off that type of chemo. Best wishes for another drug which will be successful. Please keep posting updates and questions.

Im in your corner rooting for you. Good luck my friend!!!




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
gpk101 #161988 02-23-2013 08:46 PM
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Stay strong. Hopefully the next drug will do the trick your footer doesn't d
Say anything about rads! Have you had it?


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
gpk101 #161989 02-23-2013 09:03 PM
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Hi Gordon
I am sorry to hear things are not going as expected. I'm presuming there is a reason you have not had the tried and true oral cancer SCC chemo of Cisplatin or its sister Carboplatin.
Is the plan to shrink this tumour before they surgically remove it ? Then treat you with radiation?
Have you had a second or even third opinion from a CCC?
I don't have any suggestions for you I'm sorry, but hope others on the board who have been through a similar scenario will jump in with suggestions .
I agree with you that the time is not now to give up.
Good luck and thinking of you,
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!
gpk101 #162005 02-24-2013 11:02 PM
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I am really sorry to hear the news about the taxotere failing. God bless there is another treatment to pick up the slack. Take care. don


Don
Male, 57 - 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
All the details, join at http://beatdown.cognacom.com
gpk101 #162011 02-25-2013 06:53 AM
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Posts: 122
gpk101 Offline OP
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Thanks, all for the encouragement. I'm going to re-post, though, and see if I can get anyone who's had similar happen to speak up. SURELY there's more drugs out there than just these pitiful few! I really appreciate you guys' responses!


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!

gpk101 #162129 02-26-2013 10:01 PM
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Posts: 287
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Gordon, my dad also had a recurrent/persistent tumor on his right neck and underwent TPF (Taxotere + Cisplatin + 5 FU) for 3 cycles but it did not shrink his tumor. He underwent surgery followed by re-radiation (he had 60gy, the first time). With another recurrence, he was on gefitinib and that did keep him kicking for another 6 months before cardiac arrest took him away due to multiple health issues.

If Caco is around, she can suggest her dad's treatment - clinical trial. Last that we heard was this: http://clinicaltrials.gov/show/NCT01458392

Thread: http://oralcancersupport.org/forums...mp;Words=caco&Search=true#Post158838

Last edited by Eshwar N; 02-26-2013 10:07 PM. Reason: Added thread

Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
gpk101 #162130 02-26-2013 10:04 PM
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Gordon here is the thread Eshwar is talking about.

Clinical Trial Thread


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
gpk101 #162158 02-27-2013 05:05 PM
Joined: Feb 2005
Posts: 118
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I bought some quality time with Alimta for over a year. Side effects for me were minimal. Alimta was a Phase 1 study at the time. I called that time "my lemonade year," as the drug was taken orally with a small amount of lemonade-flavored drink.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
gpk101 #162160 02-27-2013 08:23 PM
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Gordon, I'm sorry to hear the tumor is not respnding. I had Taxotere, twice, and it can cause "hand and foot syndrome" you describe. To help reduce the toxicities, cryotherapy, like putting cold mitts on hands, feet, and for mucositus, chewing ice or drinking something cold may help ruin infusions. For nail changes, use several drops tree tee oil in a small amount of nail polish, apply to nails, cuticles on hands and feet daily, Sally absence hard as nails. For small cut put crazy glue

I heard of TPF bring usdd to reduce tumor size during treatment if growth is rapid. but that has Taxotere too, in addition to cisplatin and 5-FU. There are different combinations too with similar varients. I also heard of Erbitux being used for maintenance.

I don't recall where your recurrence is, but you mention the left neck. My doctor does intraopertive operative radiation treatment for head and neck cancer, which I did in August.

I hope this helps.


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






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