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Joined: Apr 2014
Posts: 236
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Joined: Apr 2014
Posts: 236
ConcernedDaughter

Sounds like your in good hands. Chemo does help many patients and your father may do very well. Every case is different . If my mother doesn't get any good results at MD Anderson then I will be moving on. I guess if you don't feel that good feeling with the treating doctors. Which I didn't . Then it's time to move on to other opinions .

Prayers for your father . I wish you and your family the very best.
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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There are many top hospitals in the NY area. Sloan Kettering, NYU, Mt Siani and Beth Isreal are all excellent facilities. Off the top of my head Im not sure which are CCC's but I think at least Sloan Kettering is. A CCC is much more than a facility that uses a team based approach. It has been awarded the CCC distinction by the NCI (National Cancer Institute) by meeting strict criteria and works with research. There are also cancer centers (CC's) that have met many NCI guidelines to be recognized as top facilities. Bottom line is to find a team where you feel you will get the best attention are most comfortable, some place that will fit your needs and go with it. You can always opt for second opinions as situations arise.

Best wishes with everything!


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
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Patient Advocate (old timer, 2000 posts)
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MSKCC was designed #1 this year for cancer by U.S. News Report Best Hospitals Some others others are in the top 50 for cancer, top 10 or 20 for ENT. Others top paces not mentioned are NY Presbyterian, Lenox Hill, Montifiore, to name a few.

Anyplace can be called a CCC or CC. There are no trademarks, qualifications or restrictions for its use. As far as NCI designations, some may have qualified for one cancer, but not all, and has to do more with grant money, meeting other qualifications, and not their outcome of any cancer treatment, and some may have used their clout to get a designation.

NCCN has their own criteria for inclusion, and some on this list, around 28, may not be NCI designated and vice versa, but many are on the U.S. News Report Best Hospitals.


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: Oct 2014
Posts: 41
Contributing Member (25+ posts)
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Joined: Oct 2014
Posts: 41
We just received some encouraging news that made me feel a little more comforted. The RO stopped by to see my dad and spoke with me via the phone this morning. He reassured me that they see this alot and its not as uncommon as thought to spread to the skin. He said they have a lot of experience in dealing with this and believes there are options available for my dad. The dr that originally delivered the news was a fill in for the surgeon that is away for the holiday and he had such poor bedside manner. This dr made me feel a bit better. Obviously no cancer is good and its not good when there's a recurrence but hopefully theres a way to stop it. I am feeling a little better with this news...my dad although weak now, is a strong man and I never say never. We will continue this fight.


Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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That's good news, and encouraging. There is nothing like having trust in your doctors, which makes a difference in everything.


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: Oct 2014
Posts: 41
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Oct 2014
Posts: 41
I agree. Its important to have trust and faith in doctors. We are meeting with the RO director on Monday...hoping to get good news. My dad was originally against a second round of chemo as someone referred to the side effects as "devastating."

Since his doctor is away, we dont know too much about the skin metastases. What i do know is that he has several little pimples where his trache used to be and by his ND incision on the right side (which apparently had a heavily involved lymph node).

By your post Paul I am assuming you only had one pimple in your skin that was removed? Doesnt seem like thats an option for us due to the big area he has it on. Do your scans show that your skin is now clear? I hope you dont mind the questions....i just havent found anyone else on here that has experienced this.



Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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I woudn't say it was visible on the surface, but was palpable by me and the doctors from my last visit, a few weeks, so a CT was taken, and showed a metastases, which was to the epidermal layer of skin. The area removed in level V was about the size of a silver dollar on the skin, in addition too, the neck dissection incision, other cancer, I believe was in level lll, a pec flap to protect the carotid, have more radiation, IORT during surgery. Then Chemoradiation...IMRT, Erbitux and Taxotere, followed after 6 weeks healing.

My scan was clear 3 months post treatments, but had a recurrence 6 months later, so I had my carotid artery removed since it was now involved, IORT during surgery, followed by Proton Therapy and Chemo, Carboplatin.

I had clear scans three month, and 6 months after this last treatment. In addition too a head and Neck MRI, CT scan for unrelated procedures.


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 2014
Posts: 236
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
Paul

I noticed in your post that you had the Carotid Artery removed. This is what I'm afraid of with my mother since the cancer is also on my mothers carotid Artery. I've been reading up on that type of surgery and what could happen "Stroke,Heart Attack "scares the heck out of me .

We travel tomorrow to M D A. So I guess it's what ever the doctors say needs to be done .


Thanks
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


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

Joined: Jul 2012
Posts: 3,267
Likes: 1
Yes, it is risky. Even the temporary balloon occlusion, and cervical angiography testing, to see if you're a candidate for surgery is a risk. I had read 30% risk of stroke, 25% of death with the carotid removal. When my doctor told me pre-op of the customary risks, he said 5%. I was like that's good, better than I thought. Even still there are risks after. A nurse told me the doctor said he's a tough dude, and called me miracle man lol. That's why not many doctors do this or can do this surgery.

It's difficult to say if it is involved just by radiologic scanning with a CT or MRI. Most thought to be are not, and may be inflammation, fibrosis, mimicking involvement, which about 37-42% are. I had carotid involvement in 2011, and the cancer was scraped off, and alloderm placed on the carotid to protect it. That was removed in a subsequent dissection, and pec flap placed.

You're in good hands at MDAnderson. 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






Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Heidi, good luck tomorrow! Like Pauls says, you are in good hands.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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