| | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | For the past week I've been on the phone and faxing all my mothers medical records to the Head and Neck department of MD Anderson. Today I got the call that my moms insurance company has agreed to pay for her to go out of state for treatment. I just cant wait to get there. The Doctors here wanted to try Erbitux but we decided to pass on that and get a different opinion from a Comprehensive Cancer Center. We should have done this along time ago. My mother wanted to keep trusting in the doctors here but I explained to her its time to move on . There just hasn't been any good results with any treatment so far . So she has agreed to go. I was told today that on Monday I will get a call for a appointment for the first week of January and to reserve 5 to 7 days for the first visit. I feel excited about going and hopefully some kind of treatment will help my mother. Happy Holidays Everyone 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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Heidi, this really is great news! It will remove some doubt and give you peace of mind. Now go enjoy the holidays!
Happy Holidays to you and your mother!
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
| | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | Thanks Uptown
I'm felling so much better now . In the back of my mind I know my mother will be in better hands. I feel if there is any treatments available to help my mother this would be the place to be.
Thank You very much for the support
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Great news. If you can arrange treatment at CCC it is the better option, especially in a complicated case such as this.
Good luck
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 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | Thanks Don
I'll be driving 6 hours from where I'm at to Houston. I feel like this has to be done if there is any chance of my mother surviving. I cant see her being pumped up with treatments here that aren't working and then it being to late to take any other treatment that may be offered.
I feel in my heart I have to go the extra mile.
Thank you Don
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: Feb 2014 Posts: 24 "OCF Canuck" Member | | "OCF Canuck" Member
Joined: Feb 2014 Posts: 24 | Hey Sweetpe
Thats awesome news ...
My husband was told that he is terminal on December 10, 2014. This is because the cancer is back and its in his lymph nodes in his chest. We are considering MD anderson but the cost for consulatation is $33,000 and then treatment.
We are in Canada and treatment is free... maybe not the best but free...
What are your thoughts on this ...
please let me know
thanks
zahra
Caregiver to Husband
Hubby Age 43
Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014
T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes
Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site.
37 nodes removed. 3 at level 1 malignant.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Zahra - are you sure about those costs for a consultation? That seems rather extreme and out of the norm. It also looks like from your signature that the treatment so far was surgical only. Would you please confirm that this is they case. If you could get seen at Princes Margaret, which has an excellent reputation, do you have the financial means to travel to it. If a US major center would see you after a consultation is it feasible to pay for treatments here in the US?
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Apr 2014 Posts: 236 | Cantbelieve
No dollar figures was ever discussed over the phone. However insurance was a big issue. Before my mother could even get an appointment her insurance had to agree to cover the cost. I did notice on the MD Anderson Website there is financial assistance available and different methods of payments arrangements. I guess for people without insurance that is.
The surrounding hotels offer you a medical rate to stay and there are several Free places for patients who will be staying long term such as surgeries and treatments.
Once you have a appointment you will be given all the helpful information for traveling and Lodging.
A couple of people from this forum have sent me messages and said they were very pleased with the doctors , hospital and treatment. Also there outcome after treatment was really good.
This phone number is straight to the MD Anderson Head and Neck Clinic (713)-745-5146.
Heidi
Last edited by sweetpe1; 12-30-2014 05:38 AM.
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Zahra, my husband is being treated at Ptincess Margaret and, like MD Anderson, is among the top five research hospitals in the world. Our experience has been great. There are all kinds of trials ongoing if that is what you are looking for. It looks from their website that they will accept your provincial health insurance. Last week when my husband was waiting for his chemo session, we actually ran into someone from Kamloops, B.C. There is a Lodge where the patient can stay at minimal cost and you can get hospital rates from the hotels nearby.
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: Nov 2014 Posts: 66 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2014 Posts: 66 | Sweetpe
Your mom is lucky to have you advocate. MD Anderson sounds like a good move. Let us know how things are gping and what they recommend.
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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