| | Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Apr 2003 Posts: 122 | 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!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!!
ChristineSCC 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  | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
| | | | | 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 | 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!
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | 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 | | | | | Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 122 | 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!
| | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | 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/NCT01458392Thread: 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]
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Gordon here is the thread Eshwar is talking about. Clinical Trial Thread
ChristineSCC 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 | | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2005 Posts: 118 Likes: 1 | 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.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | I had Taxetere with Carboplatin for 2 cycles (1/wk x3, +1 wk off) after I had mentioned to my MO that I had experienced some additional hearing loss under Taxol/Carbo.
He said he did so (change the Taxol for Taetere) because Taxetere was formulated to reduce the neuropathy that Taxol causes.
That suggests that Taxol mght be more effective for you, being stronger.
I also knocked out my latest recurrence with Xeloda, a pill form of 5FU. It took 5 cycles (14 days @ 3000 mg/day + 7 days off = a cycle) Just got the word that I'm clean, three weeks ago.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | Hi Eshwar, sorry I'm late to this...Pop was readied 2x for that trial but has yet to participate as complications popped up. I hope your world is calm.
Zenda, can you talk more about re Alimta? What stage in treatment did you participate?
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2005 Posts: 118 Likes: 1 | Caco,
I participated in a Phase 1 clinical trial of Alimta with TRC 102 from Tracon Pharmaceuticals NCT 0062159 from 3/2/09 until 4/10/10. A RUL nodule disappeared and a right hilar lymph node decreased in size from 2.4 cm to 1.4 cm and then maintained until my 3/10 PET which showed that the lymph node had increased to 2.2 cm. At that time I dropped from the trial. The phase 1 portion of the trial had actually stopped several months earlier, but, because I was continuing to benefit from the meds, Tracon continued to provide them at no charge with the trial protocol continuing. I had such minimal side effects that I was able to travel, camp, do volunteer activities throughout the year. I believe there was a presentation made at ASCO detailing the results of this phase 1, and I recall that I was one of the few who benefited for this period of time with this drug combo. I have not followed the further testing, if, in fact, there were additional phases.
Where is your dad in his treatment plan now?
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.
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