| Joined: Oct 2013 Posts: 23 Member | OP Member Joined: Oct 2013 Posts: 23 | I'm new to this forum, never been on one, would have preferred never to be on this topic. Don't mean to insult anyone just going through the hardest situation in my life. My Dad was diagnosed December 2012. Had 35 radiation treatments, 1 round of chemo spread over 2 days. The initial tumor is no longer there, which is great, but another started in the back of his throat palate area. Surgeon says its inoperable and gave him 3 months to live in Mexico. I have wanted him to get help in the US but my Dad said treatment was same everywhere. Now, I have convinced him to come to the US. I have an appointment at Northside Hospital Cancer Institute in Georgia and I'm trying to get him another at MD Anderson in Houston. Anyone on here give me any recommendations? What should I be asking doctors? I don't think he has had a PET scan done only MRI's and the last one came back clear, all his bloodwork is normal. He has 2 large holes that appeared and are getting larger in the back of his throat, it's so scary, I'm crying everyday & to top it off I'm 6 months pregnant. Don't know how to cope with this!
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome Connie! MD Anderson is the top cancer hospital in the U.S., and probably the best place to get a 2nd or even 3rd opinion, who may have a different opinion than the one which was already given. What one doctor may not be able to treat, another one may, based on their experince, technology. and what is not operable is not always incurable, and hope thats the case with your father. Good luck, and try to relax, although difficult, keep busy, read the OCF information, ask questions.
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 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Paul is right md Anderson is the place to go. Hopefully your dad will be able to have surgery or maybe more rads and chemo, welcome! 
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 Member | OP Member Joined: Oct 2013 Posts: 23 | Thanks guys! The problem is MD Anderson is asking for $33K up front & we are working on getting a reverse mortgage. My parents are uninsured & hoping that obamacare can help. I'm trying to get as informed as I can to get the best options. Under a lot of stress not knowing where to start.
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | While the new Affordable Care Act will help (Obamacare) you can sign up this year if you live in a state where the state government is participating, (some stupid governors are opting out of much of the provisions of it) and it will cover pre existing conditions; the insurance does not take effect until January 2014. There is also Medicaid in most states and I would be working to see if you quality for that. The issue in some of these options may be that (I am assuming) he is not a US citizen. Last, remember that like all insurances, they cover a particular geographic area. My Blue Cross of California would not cover me when I went to MDACC in Texas. Outside my service area. This is the scam that insurance companies use to keep people from traveling all over the US to the best (and usually the most expensive) treatment centers. For sure MDACC takes Blue Cross, but i was quickly told by Blue Cross that BC of Texas is a different company that BC of California. So if you get insurance in Georgia, be prepared for this little surprise.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Wow! Even that for a consultation? MD Anderson is not the only top place in the U.S. Maybe some hospitals have uninsured programs, Medicaid, payment plans other programs. John Hopkins, maybe others, offer telephone consultations, which may start around $800, and have to send all treatment information. A social worker at the hospital may help, American Cancer Society. I think Emory University is in Georgia, and are reputable. Best wishes.
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 2013 Posts: 23 Member | OP Member Joined: Oct 2013 Posts: 23 | Thanks for the insight Brian. I will definitely look into that. I am taking them to apply for medicaid but that would only cover him here in Georgia not Texas. He would have to be a resident of Texas to qualify for medicaid there. I know it's a ridiculous amount, but right now, we are desperate. I want the best to give their options, if we have to do more we will do it. I do have an appt for him here in Georgia at Northside Hospital. They are working on getting him financial assistance.
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: Oct 2013 Posts: 23 Member | OP Member Joined: Oct 2013 Posts: 23 | Just got a call from MD Anderson that they medically accepted my Dad! He just needs to get a CT of the neck, a PET CT. I'm assuming that if he gets them done here in Georgia, we can take those to them. Now, we just have to wait to get the loan.
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: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Awesome....!!!!! Fingers crossed on the loan... ;o)
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 Member | OP Member Joined: Oct 2013 Posts: 23 | After seeing an oncologist at Northside, we have decided to get him chemo here in Georgia. MD Anderson will give us an appt 2 weeks away and we honestly don't want to wait. He has holes that are getting bigger in his palate area that are inoperable since it's cartilage and cannot regrow. He is applying for financial assistance from Northside and I believe he qualifies for the disability under social security to get medicaid. We are trying all avenues. Can anyone tell me how long it takes to get the disability under social security? We are not going to MD Anderson because we are afraid of the length of time it will take to get an evaluation and for them to suggest the same treatment options. The oncologist here is telling us that there are already treatment plans for this recurrence. Therefore, should we spend all that money to get the same treatment plan at MD Anderson? Now if the treatment plan fails here or we don't see any improvement then we will plan to take him to MDA. I would just like some insight from anyone else that has dealt with these type of decisions. Please!!! Thank you to anyone reading this!!
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 | | |
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