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Joined: Apr 2013
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Prayers for your dad!


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Oct 2013
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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!


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
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Posts: 23
Thank you Bart. So happy to hear your treatment has been effective! How are you feeling?


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 2014
Posts: 6
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Posts: 6
I'm new here too, but Moffitt cancer center in Tampa , has been very good with my treatment & $. Good luck


Two surgeries, removed upper left jaw and 1/2 of pallet second surgery front upper jaw and rest of pallet, obturator ( nice teeth) radiation,tired very tired, try to have fun with it smile ...since they cut the bone to my tear duct if I dab a little dawn near my eye and blow my nose I can make bubble from my eye.
Joined: Apr 2013
Posts: 319
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[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]

Last edited by Bart; 06-14-2014 11:45 AM.

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Oct 2013
Posts: 23
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Posts: 23
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?


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
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Joined: Oct 2013
Posts: 23
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!



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
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Joined: Oct 2013
Posts: 23
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!


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: 7
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
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.



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
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Posts: 23
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


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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