| | Joined: Dec 2013 Posts: 7 "OCF Canuck" Member | OP  "OCF Canuck" Member
Joined: Dec 2013 Posts: 7 | Hi everyone, I am new to this forum and a 30 year old daughter of an oral cancer patient as well as one of his caregivers. Here is the particulars for my dad's cancer and him: 63 years, non-smoker, non-drinker, health conscious, went to the gym, no health problems of any kind before oral cancer Cancer was first diagnosed in May of 2013 because he bit his tongue and it would not heal. It was stage 3/4 SCC on the right side of the tongue with lymph node involvement on the right side. HPV- Treatment was 7 weeks of radiation and 3 doses of cisplatin Finished treatment in August of 2013, was in remission for a few months but than started getting same symptoms and severe pain in ear and tongue once more. Just found out a few days ago the cancer is back. Not sure how far along it is this time. He is unable to talk, take anything by mouth, using Gtube for feedings and meds, and is taking lots of pain meds right now to control pain. He is too weak at only 106 pounds to do chemo and radiation again. My question is, is there any hope of survivable for someone who cannot undergo chemo and radiation. Perhaps with surgery and has anyone else had this experience.
Caregiver to dad, 63, non-smoker, non-drinker, health conscius and active with no health problems of any kind before OC
Diagnosed with stage 3/4SCC in May 2013 after biting tongue and not healing on right side of tongue with lymph node involvement HPV-
Treatment was 7 weeks of radiation and 3 rounds of Cisplatin
In remission for a few months
Cancer has returned and can't do radiation and chemo because too weak at 106 pounds
| | | | | 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 | Welcome to OCF. Yes there is hope for successfully treating a recurrence. Ive gone thru oral cancer 3 times, the second 2 were treated with surgery.
I would suggest going to a comprehensive cancer center (CCC) for at the very least a second opinion. Even if your father is currently being treated at one, a second opinion never hurts. Time is of the essence with recurrences so try to get an appointment set up this week if you will be going that route.
Hang in there! A recurrence is not the end of the line. While it is not to be taken lightly, I know of many patients who have been thru it and survived.
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: 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 | Surgery should be the next option... Do go to a CCC if you can... 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: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Mini:
While I'm sure this is very tough on your father due to his weight and pain symptoms, I'm sure this is also very tough on you.
You are a member now of a very big and supportive family that is just as much for caregivers as it is for patients. We have a LOT of experience in helping caregivers keep up the strength needed to help your father get through a recurrence.
So, use the forum for the technical information that will help your father's continued treatment. But, and this is just as important as the first one, also use the forum when you are feeling a little down or bewildered. Even if you just need someone to listen ... This is what we do.
Stay strong Mini,
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome, and sorry to hear of your father's recurrrnce, which is not uncommon. As Cheryl mentioned, surgery is the first, and best option for recurrences, with or without radiation or chemoradiation. I had 8 recurrences, several which were treated by surgery alone due to my health condition from chemo. Later on I did surgery with Chemoradiation, and will again any week now, so there is hope for recurrences, and do see a CCC who often deal with these cases.
Good luck.
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 2013 Posts: 7 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Dec 2013 Posts: 7 | Thank you ChristineB, Cheryld,n74tg, and PaulB for your replies. We are going to the BC Cancer agency here in Surrey, British Columbia. I took my dad to the pain management clinic there so they can help him manage his pain for now. Today he is going to the ENT for biopsy etc. to confirm diagnosis. I will keep you all posted. This has been very tough on my dad as he thought the battle was over and the whole family cause the family depends on my dad heavily. Radiation and Chemo were so hard on my dad and he also got a Gtube infection as well. He dropped 10 pounds in the first week of treatment, the doctor said that if he keeps on dropping weight like this, that they would have to stop treatment so he almost didn't even make it through treatment. He was in tears when he heard it was back, which really broke my heart cause I never saw my dad cry ever. My heart breaks for anyone that is going through this, and all the best to all of you.
Caregiver to dad, 63, non-smoker, non-drinker, health conscius and active with no health problems of any kind before OC
Diagnosed with stage 3/4SCC in May 2013 after biting tongue and not healing on right side of tongue with lymph node involvement HPV-
Treatment was 7 weeks of radiation and 3 rounds of Cisplatin
In remission for a few months
Cancer has returned and can't do radiation and chemo because too weak at 106 pounds
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Minislice, I'm very sorry to hear about your Dad's condition, but you haven't said anything about what might be happening with respect to ensuring that he gets all the nutrition he needs.
IS anyone tracking his caloric intake? He needs around 2500 calories each and every day to maintain his existence while he is fighting the fight of his life.
although I have not seen it myself, I've read here that Ensure makes a 550 cal version, 5 of those each day (through the PEG, if it comes to that) will do the job.
When I was losing weight rapidly during my first round of treatments, I did not have to have a peg because I'd lost my sense of taste entirely and drinking Jevity was no more objectionable than drinking an ice cream shake. My radiation oncologist said that he had several patients who'd lived quite happily for many years on nothing but Ensure or similar nutrition drinks.
As a matter of fact, I'm actually having a similar problem and am using the approach above. Just a month ago, I had had my liver packed, from the inside, with radioactive beads (SIRI-spheres.) These (rather, the radioactivity) made me sick as a dog and I did not increase my caloric intake until just recently. I was careless and did not monitor my weight closely, and in so doing, lost another 9 lbs; but I am confident that I will regain the weight, now that I have awakened to the problem.
Good luck to your husband, we're all pulling for him! (and you!)
Last edited by Bart; 12-19-2013 09:54 AM.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - 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: Dec 2013 Posts: 7 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Dec 2013 Posts: 7 | Hi Bart,
Thanks for your reply. My dad can't take anything by mouth cause anything that touches his tongue and throat really burns intensely he says so that is why he is using the gtube. Also he has most of his teeth pulled out before he underwent radiation and chemo. Right now he is taking 6 ensures per day through the tube but it is not making much of a difference in his weight. My dad has always had a fast metabolism and in this case that is not a good thing.
Right now his ENT is trying to get him in for a CT scan as fast as possible to see if surgery can be performed to remove the cancer. Will keep you all posted, thanks for the support and good luck on your weight gain Bart.
Caregiver to dad, 63, non-smoker, non-drinker, health conscius and active with no health problems of any kind before OC
Diagnosed with stage 3/4SCC in May 2013 after biting tongue and not healing on right side of tongue with lymph node involvement HPV-
Treatment was 7 weeks of radiation and 3 rounds of Cisplatin
In remission for a few months
Cancer has returned and can't do radiation and chemo because too weak at 106 pounds
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | How many calories in each Ensure?
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.
| | | | | Joined: Dec 2013 Posts: 7 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Dec 2013 Posts: 7 | There are 355 calories and that is the formula with the plus calories. We have upped it to 7 ensures a day so he gets 2500 calories a day.
Caregiver to dad, 63, non-smoker, non-drinker, health conscius and active with no health problems of any kind before OC
Diagnosed with stage 3/4SCC in May 2013 after biting tongue and not healing on right side of tongue with lymph node involvement HPV-
Treatment was 7 weeks of radiation and 3 rounds of Cisplatin
In remission for a few months
Cancer has returned and can't do radiation and chemo because too weak at 106 pounds
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