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#196116 - 04/12/18 04:18 PM Tongue cancer recurrence after 4-1/2 yrs  
Joined: Oct 2012
Posts: 15
mlgsings Offline
Member
mlgsings  Offline
Member

Joined: Oct 2012
Posts: 15
Chesapeake, VA
Hi, I posted on here back in 2013 after my husband David had undergone chemoradiation for cancer of the tongue. He was diagnosed in September 2012, completed treatment January 2013, NED March 2013, and had adjuvant chemo in June/July 2013.

In 2014 David's MO retired and he got a new doctor fresh out of residency. She's been seeing him through his followups up to now.

Fast forward to spring 2017. David noticed a spot on his tongue again. He had a biospy in June and it was positive for SCC. His RO mentioned the possibility of brachytherapy + possibly additional tomotherapy but thought a glossectomy was the best option. His new MO mentioned other modalities such as more cisplatin, or carbo+taxotere, or the cisplatin+docetaxel+5FU, or immunotherapy. My husband opted for immunotherapy, and started Keytruda in July. Well, by the end of the year it was apparent it wasn't working because a PET scan in Dec. showed growth and my husband started getting the facial pain he had just before he started treatment the first time around.

I wasn't going with David to his appointments and have no idea why the RO didn't get back with David about the brachytherapy or other radiation.

At the first of the year we looked into proton therapy as we have a proton center in Hampton, VA. We saw Dr. Thornton, the main RO there, and he suggested brachytherapy + proton or other external to the surrounding structures. He made a referral to Dr. Harrison at Moffitt and we had a March appt. He saw David's PET and noticed growth down toward the floor of the mouth, ordered another CT scan and advised David should still see a head and neck surgeon before starting treatment so he saw one at our local medical school, EVMS. He of course recommended surgery, and was concerned about the imaging showing growth into the floor of the mouth.


We wanted to get Dr. Harrison's opinion at Moffitt, but a couple of weeks before David's appt., the whole end of his tongue turned black and had to be finished off in the ER. When that happened we knew surgery was David's only option, so we made the requisite appointments with the surgeon and today, I am waiting while David is in surgery at Norfolk General Hopsital having a total glossectomy + neck dissection by Dr. Matthew Bak from EVMS. He is very highly regarded, as is his senior partner, Dr. Karakla, in this area. They are *the* oncological head and neck surgeons in our area.

Anyway, I just came back on here after several years of occasional lurking because I needed to get this off my chest. David won't be out of surgery until late tonight and they won't wake him up until in the morning. I've got a couple of small whiteboards, dry erase pens and his iPhone ready to help him communicate, and we've got our church family and our kids' school community all praying and rooting for him as well as offering help at the house for us - meals, rides for the kids to/from school, keeping my elderly mom company, etc.

-Melodie


Wife/caregiver to David, age 54
Dx SCC of tongue 9/28/12, stage T4aN1M0
Tx cisplatin weekly x5 beg 11/21/12 tomotherapy radiation x35 beg 11/29/12, end chemo 12/24/12, end rad. 1/18/13
3/1/13 PET and CT NED
Adjunctive carbotplatin + taxotere x3 June/July 2013
Dx recurrence 6/8/2017
Tx Keytruda July 2017 - Feb 2018
Total glossectomy w/thigh free flap + selective neck dissection 4/12/18
quit smoking 31 yrs ago
#196120 - 04/12/18 07:48 PM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: mlgsings]  
Joined: Oct 2012
Posts: 971
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 971
Toronto, Canada
Hi Melodies

I’m sorry you have to come back to the forum. I hope the surgery goes smoothly and the doctors gives him a treatment plan. Immunotherapy did not work for my husband either. I know how it feels to have your hopesmpinned on something like that and then having to deal with the disappointment.

Please let us know how things pan out. We would like to know how the two of you are getting on.


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.
#196122 - 04/13/18 05:42 AM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: mlgsings]  
Joined: Oct 2012
Posts: 15
mlgsings Offline
Member
mlgsings  Offline
Member

Joined: Oct 2012
Posts: 15
Chesapeake, VA
David is doing well after 10-1/2 hrs surgery. He's sedated but they've lightened it up already. I'll update my sig with the specs later. I thought I was going to stay all night but i was lucky i got a straight backed chair in the icu room. Yes he's aware I'm here, don't know if he'll remember when the meds wear off later this morning though.


Wife/caregiver to David, age 54
Dx SCC of tongue 9/28/12, stage T4aN1M0
Tx cisplatin weekly x5 beg 11/21/12 tomotherapy radiation x35 beg 11/29/12, end chemo 12/24/12, end rad. 1/18/13
3/1/13 PET and CT NED
Adjunctive carbotplatin + taxotere x3 June/July 2013
Dx recurrence 6/8/2017
Tx Keytruda July 2017 - Feb 2018
Total glossectomy w/thigh free flap + selective neck dissection 4/12/18
quit smoking 31 yrs ago
#196127 - 04/13/18 05:57 PM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: mlgsings]  
Joined: Jul 2012
Posts: 3,105
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,105
NYC
Melodie,

I’m glad to hear David is doing well, as I’ve been reading your posts, and wish him a speedy recovery! Sorry they had to expedite surgery, but it sounds like he’s in good hands with these two doctors! On another note, I was Dr Harrison’s patient in NYC, who I still communicate with once in a while, and happy you got to see him!

Best wishes
Paul


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196129 - 04/13/18 06:47 PM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: PaulB]  
Joined: Oct 2012
Posts: 15
mlgsings Offline
Member
mlgsings  Offline
Member

Joined: Oct 2012
Posts: 15
Chesapeake, VA
No we never got to see Dr. Harrison we had to cancel the appt in FL and get surgery for David ASAP. There was no oral tongue left to save; what wasn't tumor was necrotic and the floor of his mouth was invaded to the anterior mandible. Dr. Bak did a resection of the jawbone and took all his lower teeth, which were badly charred by radiation anyway, and put in a titanium plate. He got a good margin and didn't have to do a mandibulectomy with bone graft. Fortunately the tumor never got anywhere near the larynx. Only levels I-III of lymph nodes were removed as imaging didn't show lymph node involvement. Two other head and neck surgeons David saw said he'd likely need a laryngectomy due to being an aspiration risk from losing too much tongue. Despite losing all his oral tongue David can still swallow only hrs out from his surgery!

David had horrific facial pain for months and spent 12 days in the hospital for pain management, getting out only three days before the big surgery. He's reporting the facial pain is gone now, though he's dealing with normal postop pain, which despite having multiple large incisions and so much stitched up all over, is manageable.


Wife/caregiver to David, age 54
Dx SCC of tongue 9/28/12, stage T4aN1M0
Tx cisplatin weekly x5 beg 11/21/12 tomotherapy radiation x35 beg 11/29/12, end chemo 12/24/12, end rad. 1/18/13
3/1/13 PET and CT NED
Adjunctive carbotplatin + taxotere x3 June/July 2013
Dx recurrence 6/8/2017
Tx Keytruda July 2017 - Feb 2018
Total glossectomy w/thigh free flap + selective neck dissection 4/12/18
quit smoking 31 yrs ago
#196132 - 04/13/18 08:21 PM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: mlgsings]  
Joined: Jul 2012
Posts: 3,105
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,105
NYC
Melodie,

I’m sorry to hear all this! It’s not only difficult for the patient, but caregiver too, but I’m glad you’ve both found some positivity, and the pain is becoming more manageable. Take one day at a time! Do you have others to help while David is in the hospital, hopefully so!

Paul


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196135 - 04/13/18 09:33 PM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: PaulB]  
Joined: Oct 2012
Posts: 15
mlgsings Offline
Member
mlgsings  Offline
Member

Joined: Oct 2012
Posts: 15
Chesapeake, VA
Thanks Paul, we do have help from our church and my kids' school with meals, rides for our kids to/from school, sitting with my mom, etc. We also have friends who will come when we call too. It has been a Godsend.


Wife/caregiver to David, age 54
Dx SCC of tongue 9/28/12, stage T4aN1M0
Tx cisplatin weekly x5 beg 11/21/12 tomotherapy radiation x35 beg 11/29/12, end chemo 12/24/12, end rad. 1/18/13
3/1/13 PET and CT NED
Adjunctive carbotplatin + taxotere x3 June/July 2013
Dx recurrence 6/8/2017
Tx Keytruda July 2017 - Feb 2018
Total glossectomy w/thigh free flap + selective neck dissection 4/12/18
quit smoking 31 yrs ago
#196152 - 04/15/18 12:30 AM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: mlgsings]  
Joined: Jul 2012
Posts: 3,105
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,105
NYC
Melodie,

That’s great to hear about all the help, as that can make a difference!

Wishing for a speedy recovery!

Paul


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196346 - 05/04/18 06:44 AM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: mlgsings]  
Joined: Mar 2011
Posts: 1,011
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,011
New Zealand
Hi Melodie, I hope recovery has gone well for David. Be assured that he will be able to talk and I hope he is talking to you. I'm sure he will need lots of help from a Speech Therapist , both for speech and swallowing issues. This is difficult surgery isn't it. We are more than 6 years out now from total Glossectomy and laryngectomy. I wish you both the best.
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!
#196373 - 05/09/18 03:41 AM Re: Tongue cancer recurrence after 4-1/2 yrs [Re: mlgsings]  
Joined: Oct 2012
Posts: 15
mlgsings Offline
Member
mlgsings  Offline
Member

Joined: Oct 2012
Posts: 15
Chesapeake, VA
Yesterday David had his appointment with the surgeon and the tracheostomy tube was *FINALLY* removed! He's been talking regularly for more than a week *and* drinking water and Boost by mouth for nearly a week. The ENT office is lining up speech/swallowing therapy for him. The last few days he's been venturing out of the house more and more, with me chauffeuring, but today he was driving :-) .


Wife/caregiver to David, age 54
Dx SCC of tongue 9/28/12, stage T4aN1M0
Tx cisplatin weekly x5 beg 11/21/12 tomotherapy radiation x35 beg 11/29/12, end chemo 12/24/12, end rad. 1/18/13
3/1/13 PET and CT NED
Adjunctive carbotplatin + taxotere x3 June/July 2013
Dx recurrence 6/8/2017
Tx Keytruda July 2017 - Feb 2018
Total glossectomy w/thigh free flap + selective neck dissection 4/12/18
quit smoking 31 yrs ago

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