| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!
ChristineSCC 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  | | | | | 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 | If you are considering clinical trials, this page is very helpful and lays out the steps http://www.cancer.gov/clinicaltrials/search/treatment-trial-guideThere 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.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thanks for posting the link, Gloria!
ChristineSCC 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 | | | | | Joined: Oct 2013 Posts: 23 Member | | OP Member
Joined: Oct 2013 Posts: 23 | 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.
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) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
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 | 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
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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