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Nick V Offline OP
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Hello,

It wasn't too long ago where I my family felt we had won the battle. My mom was diagnosed in August 2008 and underwent mandible reconstruction. We were worry free for a while. Earlier this year she had an enormous growth in her neck area that was also removed. Yesterday, I found out that the cacner has spread to lungs and lower spine. Will have an appointment with the doctors soon. Thoughts on how to handle this?

Last edited by Nick V; 09-16-2014 08:15 AM.

CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
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Hello Nick,

I'm sorry to hear about the new cancer. Has it been diagnosed as recurrence since you mention spreading? Cancer treatment option are influenced by prior cancer diagnosis and treatment.

Since you have already been through one of the common treatment plans - surgery/chemo/rads, you know much about the processes which will guide you along.

Having two sets of ears helps during all medical meetings and keep good notes and write questions down to ask.

If you can post more specifics of the diagnosis that would help get more specific replies.

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
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"OCF Canuck"
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I would be asking if they're cetain it's oral cancer related. If it's not then oerhaps there is another chemo that this type of cancer reacts to. Rads to the neck area depending on location can also help. (She can be reradiated) but I would also want to know for sure that this is definitely OC related - dr.s automatically concluded it is but that's not always the case. A friends husband had HPV related BOT cancer. They treated it, they found a nodule in his lung... Assumed it was SCC spread only to find out it was early stage lung cancer (small cell) he was treated for lung cancer and is is now NED.
Also there is a place in California that does tumor testing to see the best chemo to treat this with. Hugs.

Last edited by Cheryld; 09-19-2014 07:45 AM.

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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Nick V Offline OP
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here's the update on where it has spread. My mom is now considered terminally ill:
-15 mm lymph node
-2.3 cm posterior left upper lobe (left lung) which is adjacent to two smaller nodes measuring 7 mm
-Focal lystic lesion in the L2 vertebral body

We have two option with treatment:
option 1: doing a three combination therapy involving f5-u and cetuximab, pros: this therapy has a better result, cons: there is no alternative therapy

option 2: doing a two combination therapy and if it fails doing cetuximab, pros: there is a second option if first therapy fails, cons: lower results than the first option

Please advise for those who are familiar because I don't know.


CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
Joined: Oct 2012
Posts: 1,275
Likes: 7
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I don't know if it would help, my husband who is in a similar situation with mets to the lungs is receiving taxol and carboplatin. The side effects seem to be less severe than when he had cisplatin. He has diarrhea for a few days (takes Imodium to help with that), joint pains for a couple of days (takes Tylenol) and that is about it. We are waiting for the CT to find out if it has worked.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Nick V Offline OP
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Let me know if I should ask for more information in reagrds to the two options. thanks and please help as I have no idea as of yet


CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
Joined: Oct 2012
Posts: 1,275
Likes: 7
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I would ask if there are clinical trials that your mom can participate in at some point, perhaps not now but when and if she runs out of options.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Nick V Offline OP
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[quote=Cheryld]I would be asking if they're cetain it's oral cancer related. If it's not then oerhaps there is another chemo that this type of cancer reacts to. Rads to the neck area depending on location can also help. (She can be reradiated) but I would also want to know for sure that this is definitely OC related - dr.s automatically concluded it is but that's not always the case. A friends husband had HPV related BOT cancer. They treated it, they found a nodule in his lung... Assumed it was SCC spread only to find out it was early stage lung cancer (small cell) he was treated for lung cancer and is is now NED.
Also there is a place in California that does tumor testing to see the best chemo to treat this with. Hugs. [/quote]

hey thanks. Do you know the place in CA? Also, wouldn't it depend on the chemo she has had in the past?

Last edited by Nick V; 09-19-2014 03:36 PM.

CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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No it depends if on what works against the tumors she has presently - look up cocopops posts she mentioned the name of the center.


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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Nick V Offline OP
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Can't find anything for cocopops using the search tool


CG to mother. Diagnosed with SCC August 08. Surgery Sep 08 to remove right mandible and replace it with fibula from left leg. Also neck dissection with one pos. node. Rad/Chemo with cisplatin completed Nov 30, 2008.
Passed away Dec 15, 2014
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