Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
#193269 10-26-2016 07:54 AM
Joined: Feb 2007
Posts: 20
Member
OP Offline
Member

Joined: Feb 2007
Posts: 20
Hi
My husband is an oral cancer survivor with a recent recurrence. His original cancer in 2006 was on the right side of the tongue and had metastasized to his neck by the time he was diagnosed. He had an excellent surgeon and care team in Baltimore : had a hemiglossectomy and modified radical neck dissection followed by 32X IMRT. He was very lucky: the team declared him cured in 2010; we relocated to Virginia later that year.

Fast forward to early 2016. His dental hygienist saw a spot on the left side of his tongue. He consulted an oral surgeon and they decided not to do a biopsy. After several consultations, they finally do a biopsy in June. It's positive, and the tumor shows signs of perineurial invasion. The follow up is terrible (missed phone calls; staff on vacation) and when he finally connects with the surgeon in July she tells him the tumor board recommends a total glossectomy. He insists on second opinions and meetings with an oncologist and radiologist. He is adamant that he will not have a total glossectomy.

I finally persuaded him in July to consult with MD Anderson in Houston, and he had his consultation appointments in August. The good news was that the tumor was still small and had not yet metastasized to a detectable level on any of the scans (PET, CAT, and MRI). He had chemotherapy in August and September and returned this week for follow up.

The bad news: the chemo was only partially effective. The tumor did shrink from 16 millimeters to 9 mm, but it is still diffuse. The radiologist seems adamant that more radiation is just not possible: it is too dangerous. So, we are waiting for the final consultation later this week with the options and next steps.

I'm frustrated and angry that it took so long to get him diagnosed and into treatment this year. Nothing I can do about that now. I'm scared about what is going to come. I don't think he is going to survive this recurrence.

He's in the best possible hands at MD Anderson and they said in August that he is a long way from clinical trials and experimental therapy. That may not be the case now, after the chemo. We'll hear their options and advice shortly, but I'm interested in what people on this board have experienced and what they know. I'm hoping for a treatment course that can give him a few more years with good quality of life but I'm no longer very optimistic about it.

What have all of you on this board seen with treating recurrences and the treatment effectiveness?
Thanks for listening


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Im very sorry you are going thru a recurrence with your husband. If you havent already taken your husband to a CCC I suggest finding one right away. Recurrences can move quickly so try pushing for the earliest appointment with asking to also be on their cancellation list. At a CCC they have the most experience with recurrences and complicated cases.

Best wishes!!!


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
Joined: Feb 2007
Posts: 20
Member
OP Offline
Member

Joined: Feb 2007
Posts: 20
Thank you, Christine.

He is being treated at MD Anderson in Houston. They are supposed to be the best in the country. They have been absolutely wonderful! I'm sorry we didn't get him there in June instead of August.

They told him before he started chemo that he was a long way away from clinical trials or experimental treatments. We're waiting for the next consultation later this week to see what the next steps are. He has been adamant about not having a glossectamy. The radiologist is pretty adamant that more radiation, even brachytherapy, is too dangerous for him. So we don't know what is left. More chemo? He tolerated this first round extremely well, with very few side effects and those not very severe. But the tumor characteristics are pretty invasive (it's diffuse, has perineural invasion) and it sounds like the odds of a metastasis are still very high.

We were hoping that he was going to be one of the lucky people who had several years of high quality of life left and now we are not so sure.

I'm very interested in hearing what others on the board have experienced.


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Hi Caregiver,

I'm sorry you are facing these new struggles. Do you know what kind of chemo he had? Was it immunotherapy? Has his doctor talked about immunotherapy as a possibility at all? It may be worth you while to further investigate.


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.
Joined: Feb 2007
Posts: 20
Member
OP Offline
Member

Joined: Feb 2007
Posts: 20
Hi Gloria

The chemo drugs were carboplatin and taxotere, three doses three weeks apart. The docs at MD Anderson mentioned immunotherapy at the first consultation but weren't ready to go there yet. Maybe they will be after this first round of Chemo. We'll have to wait and see what they say at the next consultation later this week.

They aren't talking about timelines yet. The tumor is still small. Maybe they can keep it at bay for some years. I just don't know and my bet is that they don't know either. No guarantees, just hoping for the best


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
The fact that immunotherapy has been mentioned is a good thing. That is something the doctors can go to if need be. One member on the form has been given immunotherapy and has had a good response. You may want to look up larry6905 and read what he said.


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.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
You are correct, MD Anderson is one of the countries top CCCs. Your husband is in good hands with some of the top specialists. You still may want to check into another CCC if for nothing else than to hear a second opinion.

I thought of something else that might be an option. Are there any trials that he could get into? Its worth looking into. We have had several members who did very well the the new Optivo chemo when it was trialed. That chemo is for mets to the lungs, Im not sure if it works for other things or if it could be an option for your husband. Ask his doctors if he could benefit from trying it.

Hang in there!

Last edited by ChristineB; 10-26-2016 06:55 PM. Reason: add info

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
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
I had Perimeural Invasion, PNI, a number of times found through biopsy. Most were treated with surgery, Chemoradiation, but when it wasn't I had recurrences once to the epidermal layer of skin. Evidence suggests PNI to be a risk of local-regional recurrence, metatastic spread, and reduced survival, although it's not fully understood or sgreed upon. PNI, which is microscopic, is basically unseen by scan, but MRI is used to see the tumor extent, and PNZo is almost always an indication got adjunct radiation like IMRT, but it's uncertain what roll chemo has with PNI.

Sounds like the chemo used was a form of induction chemo, which is used to sensitize the tumor for radiation, reduce the tumor burden for surgery, but time, sometimes eliminating it completely, but this response usually doesn't last, and tumor will likely return in less than a year, and in my case, after a complete response, it did, although my tonsil tumor never did. I'm not sure the intent MD Anderson had, but likely had something to do with the refusal of any surgery. Chemo alone does not cure this not does immunotherapy, although durable responses have been shown.

Surgery is usually the first option with recurrences with or without radiation or Chemoradiation. Not sure why a total glossectomy was recommended if the tumor was still small. With PNI i guess the cancer would need to be removed along the nerve line until the margins are clear.

Small tumors, T1, T2 can sometimes be treated with radiation, but as mentioned, they said no. Maybe with Proton therapy it can, and believe it can with a flap with new tissue, but that involves removal of the tumor.

In absence of surgery, I'm not sure what else can be done curative, except palliativly with more chemo, probably different than used begor or maybe an EGFR Inhibitor like Erbitux, where some are on
maintenance for years, and maybe immunotherapy down the line, as mentioned.

Good luck with everything.




Last edited by PaulB; 10-26-2016 04:27 PM.
Joined: Feb 2007
Posts: 20
Member
OP Offline
Member

Joined: Feb 2007
Posts: 20
Thank you all for the responses and the kind wishes.

PaulB, I know just how bad this tumor is and that it will kill him if he doesn't get treatment other than chemo. I think his medical team hopes to shrink it enough to do surgery that isn't too invasive and we'll find out whether that is possible at the consultation. The thing that makes the surgery hard is that the tumor, small as it is, is really irregular (diffuse). My husband had a hemiglossectomy in 2006. He isn't willing to live with less functionality than he has now. So the question is whether there is a surgery that is less invasive than a total glossectomy and possible.

Christine, I read just yesterday that the FDA approved a new immunotherapy drug, Keytruba, for head and neck cancer recurrence that seems to have a good response. I will definitely ask about it.

If we can't get a cure with surgery or radiation, I am hoping they can keep him relatively healthy and comfortable for some years with chemo and immunotherapy. I know it's a long shot but he beat really long odds with the first cancer in 2006.


2006 tongue T2/N1; hemiglossectamy + MRND +32X IMRT
2010 "cured"
6/ 2016 recurrence right tongue T1/N0 perineural invasion 9/2016 3X carboplatin/taxotere
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Thank you Caregiver, as this explains the situation better. I should have read your profile, and see the prior hemoglossecyomy, but I'm working with my iPhone, and can't see a thing sometimes. Sounds like MD Anderson has a plan to do Chemo in hopes of surgery later on, including what the patients preference is.

Not sure if it was mentioned or is applicable, but there is Transoral Laser Microsurgery (TLMS) that is less invasive than other surgeries, and may not interfere with other treatments. .

Good luck


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






Page 1 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5