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plantgirl #149094 05-04-2012 01:01 PM
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So that is positive news! Glad it has not gone into your lungs! There are several here who have done rads twice. Its not easy and you did it before so you know how it goes. But this time around you know what to avoid and know how important nutrition and hydration are to getting thru it easier. If you need to go thru rads again, you can do it!!!! This time around you have OCF behind you.


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
ChristineB #149102 05-04-2012 03:37 PM
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Posts: 74
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Hi Christine. Im praying I only have to do Chemo so I can still keep working. My FMLA is all used up and I have pretty much used up my lifes savings.Man..I did not expect this again so soon. Hopefully 3 times the charm!!


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
plantgirl #149108 05-04-2012 04:48 PM
Joined: Mar 2011
Posts: 1,024
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Hi Christine,
I'm assuming that this reoccurrence is also HPV+. The reoccurrence was also Base of Tongue, so in exactly the same site. I guess that although Kris had a clear PET last June, there must have been a few cells remaining that were not killed off by the radiation and Cisplatin. It was a small localized reoccurrence and not as large as the original tumour. Although his surgery was done on the original tumour margins. Guess we are one of the unlucky ones.
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!
tamvonk #149118 05-04-2012 08:10 PM
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Plant girl as far as I know chemo alone isn't very effective against OC - push for more... Maybe a combination of chemos? Hug - so glad I not in your lungs!!!


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
Cheryld #149120 05-04-2012 11:56 PM
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Are you being treated at a cancer center? Have your doctors suggested chemo would be the only thing necessary to cure this recurrence? What about a second opinion?


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
plantgirl #149127 05-05-2012 03:42 AM
Joined: Nov 2010
Posts: 74
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Im seeing docs Monday. I dont know what I will be doing yet. Ill let you all know.


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
plantgirl #149128 05-05-2012 03:44 AM
Joined: Nov 2010
Posts: 74
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Im being treated at UNC cancer hospital in Chapel Hill NC

Last edited by plantgirl; 05-05-2012 04:27 AM.

4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
plantgirl #149145 05-05-2012 02:25 PM
Joined: Jul 2011
Posts: 945
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UNC should be a good place - they are highly regarded and have a good many clinical trials going. However, getting a second opinion is not a bad idea, either. If you don't have the information already, you may want to ask about having some of the some of the additional biomarkers - besides HPV - that might provide a more information on what course to take next. Hope that things go well on Monday.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #149247 05-07-2012 07:19 PM
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Posts: 596
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Hello, Plantgirl.

I haven't consistently been on the forums for a few weeks, now, so I am just learning of your recurrence. I am so sorry that you are going through this at all, let alone for the third time! Like others have said, I am so grateful that it is localized.

I did not have chemo/rads, so I can only go by what I have learned through OCF, but it seems that rads is what KILLS the cancer and the chemo prevents or slows down the spread while you are getting treatment. Someone here, correct me if I'm wrong.

My advise to you, other than getting a second opinion (this is your life), is to write down all of your questions and get them all answered. Keep a notebook handy at all times so that when a question arises, you can jot it down while it's fresh in your mind.

I give you my best wishes in this battle. I will be holding you close in my heart.

With great care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #149287 05-08-2012 03:12 PM
Joined: Nov 2010
Posts: 74
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As it stands now, if the labs and EKG are ok, I will be in a clinical trial for the chemo drugs Capecitabine and Lapatinib. They are FDA approved for breast cancer but they have very good results for patients with OC. Ill have to take 2 pills a day (no IV yay!!!)
and see the Dr every 3 weeks. The side effects are not at all bad so I should be able to continue working. Like I said this all depends on my tests so Im praying. It really seems like the best option for me as I cannot do any more radiation to that side. If at any time they find the cancer not responding or spreading I will have more options. What do you guys think?


4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010)
Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb
50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
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