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!

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.

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!

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.

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.

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.

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.

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.

Awesome....!!!!! Fingers crossed on the loan... ;o)

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!!

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,

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.

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.

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!

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.

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!

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?

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.

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

Toes and fingers crossed.....

Prayers for your dad!

Thank you David, it's great to have a forum to search for things and read through other posts, but at the same time its saddening. I read yesterday through another persons post and then his wife updated it with the news of his death. That made me break down in tears & last night I couldn't sleep thinking about how long it is taking to get him(my Dad)more treatment. I'm mad, at everything it seems!
I'm trying to keep calm and just be positive, so I appreciate any advice, prayers & words of support!

Thank you Bart. So happy to hear your treatment has been effective! How are you feeling?

I'm new here too, but Moffitt cancer center in Tampa , has been very good with my treatment & $. Good luck

[quote=Connie Cruz]Thank you Bart. So happy to hear your treatment has been effective! How are you feeling? [/quote]

Hi Connie,

First, thank you very much for the kind words in your message over in my intro thread, and please forgive me for not responding there and then.

I hate to talk about how I'm feeling at any given time because I always look at physical stuff as what it is, transient. It can be great, or it can be lousy, but whatever it is, it will surely pass and be replaced by another, different feeling.

But you asked and deserve an answer as you are family. At the moment, I feel like I am extremely constipated (although, ironically, my condition with a blocked bowel is diametrically opposite - I stay close to the bathroom) because I take such massive amounts of laxatives (4-6 servings of Miralax (polypropylene glycol) and 4 Ducolax daily, it keeps my gut full of liquid. This has been the story for the past 4 months and will be for probably the next 4 to 6, depending on how the rads affect the situation.

But focus on what I said initially, this is just something to wade through, and when I get through it, it'll all be behind me and no longer an issue.

Mentally, I'm fine (that's my story anyway; and I'm stickin' to it!) My "horse" is uncomfortable but I'm just fine!

Bart

[edit: typo]

Linda,
Welcome, and I'm sorry you are going through this. I will keep you in my prayers! Let me know how your treatments go. Have you lost any weight?

Bart,
No worries about responding to my message in your thread.
I'm sure you hate talking about how you feel, I know my Dad just always says he's feeling "so so", it's never bad or good. I guess I can't understand the pain he or anyone with cancer goes through. I still ask.

Hate hearing about constipation, with all those laxatives I would stay close to the bathroom too!

I can just hope and pray for you to feel better and I love your attitude! Please keep that positive attitude

Keep the "horse" busy!

Hello everyone, I'm back on here again after months of therapy for my Dad. He was given more radiation (irradiated the same site)for 35 treatments. He was given 6 chemo with cisplatin. After waiting an excruciating 12 weeks to get a PET scan, we just received results yesterday. Apparently it has metastasized to his hip bone. Not sure yet, but a biopsy has been ordered. It is devastating news for our family. If this is a metastasis then there is really nothing else to do. Maybe some clinical trials, but he said he doesn't want to go through all of it again. He wants to die in peace. He was also thinking of a holistic approach, there is a center based on a Dr.'s therapy/juicing that we are thinking of having him do. We will just wait for results of biopsy before any plans are made.
On another note, I was also just recently diagnosed with breast cancer. So, to top it off, now I have chemo to go through myself!
Please let me know if anyone has any information on clinical trials, alternative medicine, etc...
Thanks!

Im very sorry to read this update. Im sure your whole family and father are devastated by this news.

There was another member with a similar situation. They responded very well to the trial they took part in. Im sorry but I cant remember any of the exact details, maybe another member will have a better memory.

The only ways to cure this type of cancer are either surgery and/or radiation with or without chemo. By itself chemo may shrink the tumor but generally when used alone its only for palliative care. Alternative procedures which have not been scientifically proven to work should not be discussed on the forum. These medications/procedures may be harmful instead of helping. A healthy diet is always best for everyone but it will not cure cancer. Please use extreme caution with anything other than conventional procedures. Sadly, there are far too many people out in the world who are looking to make a fast buck instead taking advantage of patients in desperate situations.

Thanks Christine,
I really need to know if anyone knows of any trials that may suit him. He has a biopsy scheduled for Nov 19th of the iliac bone. I'm honestly very scared of this since I'm worried of further spreading of the cancer. Do you think it's a good idea to go through with this? Right now I'm also dealing with him being delusional. He speaks about people that are not there, about coming to visit him. I'm worried that he may be taking too much Roxicet, does anyone know of something like this happening? I have the prescription for another bottle of roxicet, but I would like to keep it away from him or manage it for him. My mother is the one living with him & I'm afraid of him becoming violent since he doesn't realize he wakes up in the middle of the night saying & doing things around the house.
Someone please help me with their thoughts on what this could be.
Thank you,
Connie

Connie, you should have a good chat with his doctor about the side effects of his pain meds. Sounds to me like he could use a change to something else.

A biopsy will determine what is going on and help to make the treatment plan. I understand your concerns but its all part of the process.

A while back someone posted the website where you can check for clinical trials. Im sorry but I dont remember what it was. Try doing a Google search. I would guess that its at a .org address.

Best wishes!

If you are considering clinical trials, this page is very helpful and lays out the steps

http://www.cancer.gov/clinicaltrials/search/treatment-trial-guide

There is also a link on this page to the NCI list of trials.

I would talk to the doctor too about the sleepwalking and possible hallucination.

Thanks for posting the link, Gloria!

There are so many clinical trials & I have tried to go through them all. I have forwarded a few to my Dad's oncologist & he said he would be happy to discuss them with me. At this point I'm going to see if my Dad is willing to travel to the #1 cancer center in Houston since I feel like we haven't been given much hope.
I did talk to his Dr about hallucinations and I was told to see how much pain meds he's taking. He had just finished his bottle of roxicet and I don't want to give him another one until I see if he is overdosing. So, he hasn't had any roxicet in the last 48 hours and he stopped talking, walking in his sleep & hasn't hallucinated. I'm thinking he was overdosing on it. Now I have to figure out a way to measure his dosage & give it to him only when I now it's been 6 hours from the last. I don't know how he'll take that I'm going to babysit his med taking.

Your dad being older may be taking the right dosage but it may not be clearing his system as quickly (related to kidney, or liver function. Ask about adjusting his dosage?

hugs.

Another update on my Dad
-He did 35 treatments of Radiation & 6 chemos with Cisplatin
-didn't work, it has metastasized to his hip(iliac) bone and has a bump on the top of his head
-Oncologist said not much else we can do, but offered Taxotere each week for 3 weeks
-received 2 doses & growth still happening
-My father is frustrated & yelled at his oncologist, oncologist walked out on us!
-I wanted him to start an immunotherapy trial and oncologist said no because he needs to be up and about 75% of day
-offered methotrexate, but my father refused
-Now awaiting to get into clinical trial in the #1 center
-I just read the last CT scan of head & shows scalp metastasis, probably why it's showing up as bumps on his head
-Can't wait to get into clinical trial, hoping this will help