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Joined: Jul 2012
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Connie, there are two ways I know of to get SS disability, and that is SSDI, which requires a certain amount of work credits, like 10 years, and wait for medicare is 29 minths from dissbility date, the other, which is not really paid by SS, is SSI for those with not with enough income, work credits and are usually qualified for Medicaid automatically. I only really know about SSDI, and was approved quickly by telephone, 3 months. They can expedite it quicker, for compassionate reasons, for certain conditions, which cancer usually qualifies, and all the conditions are listed on their website, where you can get all other the information by telephone, in person, or Internet.

I can't really advise you what to do, as far as doing treatment as planned vs waiting for MD Anderson. If it were me, I would probably proceed, and not wait. I sought a consultation a major CCC, and waited a month just for a consultation, only to be told, don't bother coming in, but I wasn't waiting on them either, and already had another CCC in the works, ready to go, and proceeded with them, and was probably a better choice.

Good luck with 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: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Connie, SS can take a long time to get. Im not sure how SS is affected by the government shut down.

Another avenue which can help a little is thru the American Cancer Society. They are available 24/7 and can give your father a voucher for up to $300 at the pharmacy or to help cover cost of transportation to get back and forth to treatments. This takes a few weeks so start now and call them to ask for help. While you are at it, ask about getting your father on the list for a volunteer driver. This would be a big help to give you and your mother a day off once in a while. Im a volunteer driver for the ACS and help take cancer patients to their appointments when I have time.


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: Oct 2013
Posts: 23
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Posts: 23
Thank you Christine for your advice. I couldn't bare to have someone else drive him, that wasn't my brother or myself. He's so depressed and is crying if he doesn't hear what he wants.

I'm not sure how SS is affected either, but I am getting the letter today from ENT specialist.

My Dad is so frustrated, he sees things moving along slowly. His cancer is eating away at his palate, has more holes. ENT said not operable, but that there is another DR at another CCC that has done major surgeries and used skin graft to reconstruct, since he would lose his jaw & part of his neck. He just recommended not doing that until we got a PET scan to determine it hasn't spread or we would be putting him through a useless surgery. Does anyone know of a survivor of recurrent cancer in the oral cavity? I'm desperate to find him some hope, he is so depressed.


Caregiver along with my mother to my Father
SCC 12/2012 age 63
25 rad end 2/2013
10 rad end 7/2013
9/19 recur. Stage IV
not a candidate for surgery
more chemo 10/2013
Clear PET 01/2014
cancer back on PET 04/2014
not operable MET to nose
at a NCCN
35 Rad start 06/23/14
Chemo every week during Rad for 7 weeks
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Please just consider the volunteer driver program. When the going gets tough it will be a huge help to get a break in driving once in a while. Plus it probably would do your father good to be able to go out by himself and talk with another person unrelated to his situation.

I am a survivor or 2 recurrences of OC. There arent many of us 3 timers out there but there are some who have gotten thru it. The odds were stacked against me and somehow I pulled thru my third round of OC.

If your father is already struggling with depression, PLEASE take action now. Seek out a therapist or someone who he can talk to about his situation. It would probably help him to connect here with other survivors. He may need anxiety meds to help get him thru this round of OC. Those can take a few weeks to kick in so start working on getting him some help right away.

We are here not just to support your father, we will help you too. 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: Oct 2013
Posts: 23
Member
OP Offline
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Joined: Oct 2013
Posts: 23
Thank you Christine! You definitely give me hope! We had our priest come to our home last night and pray with us & do a special prayer for my Dad. I think that helped my Dad feel more comforted. We are working on getting him an appointment to get his first PET scan & have a port this week so that he can start chemo. I think once the process is started he will feel more at ease since something is being done to stop it. I am going to look for a therapist and see if they can help my mother & father, they both are breaking down & I'm really worried about them. My faith is keeping me sane & I'm an optimist, but I do break down once in a while with my husband, and everyone is so worried about me because I'm 27 weeks pregnant. Again, thank you for your response.


Caregiver along with my mother to my Father
SCC 12/2012 age 63
25 rad end 2/2013
10 rad end 7/2013
9/19 recur. Stage IV
not a candidate for surgery
more chemo 10/2013
Clear PET 01/2014
cancer back on PET 04/2014
not operable MET to nose
at a NCCN
35 Rad start 06/23/14
Chemo every week during Rad for 7 weeks
Joined: Jun 2007
Posts: 10,507
Likes: 6
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
Likes: 6
Being pregnant can make your hormones wacky and break downs are to be expected! This can be so difficult on caregivers that many will get assistance themselves with the anxiety meds. Being a caregiver is such a tough job! You have to be there for the patient, advocate for them and be their nurse while dealing with all the office politics that go along with it and watching someone you love suffer but doing it with a smile on your face and a strong facade. Definitely NOT an easy task at all.

Please seek out someone for your father to talk with. I will send you my number thru a PM. It really helps to talk with someone who has been there. Knowing fellow OC survivors is a great moral booster for patients. It doesnt help meeting other cancer survivors.... it needs to be OC survivors to really make a huge impact.

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: Oct 2013
Posts: 23
Member
OP Offline
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Joined: Oct 2013
Posts: 23
I got your number, thank you! I will ask him how he would feel about talking to someone that has been through the recurrence more than once. I will let you know and send you a pm before I call.

Can you help me with a question I have? I'm not very familiar with everything yet, but what is the difference between palliative care & hospice care, what about remission, is that possible without being cured?


Caregiver along with my mother to my Father
SCC 12/2012 age 63
25 rad end 2/2013
10 rad end 7/2013
9/19 recur. Stage IV
not a candidate for surgery
more chemo 10/2013
Clear PET 01/2014
cancer back on PET 04/2014
not operable MET to nose
at a NCCN
35 Rad start 06/23/14
Chemo every week during Rad for 7 weeks
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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Palliative care and hospice care are similar, though I believe palliative care can be conducted long term on an outpatient basis at home. Plus in some instances patients are seen by a palliative team for pain management and this doesn't necessarily mean end of life care - just pain management. , I believe hospice is actually a hospice setting where you live in. And it is an end of life facility - i think often the two words are interchanged. As for remission usually means the cancer is more or less gone, and not active. I believe there are periods when people have active cancer but it's not progressing - so it's stable. I think this is more what you are referring to. Best of luck and many prayers to you and your family.


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
Joined: Oct 2013
Posts: 23
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Posts: 23
I wanted to update all on my initial thread. It's been a while because:
- I had a placental abruption in my 29th week of pregnancy. My daughter was born weighing 2lbs 4.5 ozs
- My Dad received chemo and had a clear PET scan on january 2014 around the time I got my baby out of the NICU
- We were ecstatic needless to say about the clear PET scan, but oncologist decided to keep him on maintenance chemo (Erbitux)
- follow up PET scan April 2014 showed it is back! very upsetting since the chemo didn't help
- ENT said it was operable had surgery scheduled for June 9, 2014 and as they put him under they noticed discolored tissue in nose area, did a biopsy and showed cancerous cells, cancelled surgery, so now it has grown into his nose
- We were devastated! Sent to a Radiation Oncologist & Medical Oncologist, treatment is now to re-irradiate the area for 35 treatments and chemo once a week for those 7 weeks
-I'm trying to stay positive but it's very hard! The good thing is he wants to keep fighting and is willing to do anything
- We feel that we don't have time to go to another center, so we are staying with this center in Georgia

Last edited by Connie Cruz; 06-12-2014 11:17 AM.

Caregiver along with my mother to my Father
SCC 12/2012 age 63
25 rad end 2/2013
10 rad end 7/2013
9/19 recur. Stage IV
not a candidate for surgery
more chemo 10/2013
Clear PET 01/2014
cancer back on PET 04/2014
not operable MET to nose
at a NCCN
35 Rad start 06/23/14
Chemo every week during Rad for 7 weeks
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Joined: Sep 2006
Posts: 8,311
Toes and fingers crossed.....


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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