| | 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 |
Leonard:
Sorry to hear your father still is suffering so much. Maybe I missed it, but exactly what type of facility is he being treated at? Did his doctors at least give him something for pain, hopefully the fentanyl patch? You mentioned an ENT, what is the other type of doctor he is seeing? My ENT prescribed meds for me, as did both my medical oncologist (chemo) and radiation oncologist.
As far as the First Mouthwash, sorry but I havent heard of that before. Most of us here have used Magic Mouthwash to get thru the pain of mouth sores. There are many different varieties of Magic Mouthwash, mine was lidocain, malox and benedryl. That with the patch and something for breakthru pain should do the trick.
If your father is unable to swallow anything at all, then that is something to be concerned about. I dont want to scare you, but is his throat swollen? Can he talk? Maybe its swollen inside. Has your ENT scoped him to see inside? If he cant swallow anything at all, the ER might not be a bad place to take your dad. I would be worried about his throat closing and his breathing. Nothing by mouth for 2 days will make him dehydrated and weak.
Please update when you can about your fathers condition.
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: Apr 2007 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2007 Posts: 93 | Leonard,
I'm sorry to hear about what your father is going through. My sister also slowly lost the ability to swallow and was given a PEG tube. She had lost so much weight and hadn't begun her radiation or chemo, so there was a real concern about her ability to to survive the treatment. It made a huge difference and she was also given oral (liquid) morphine for pain (ear pain) management, it's placed under the tongue. It must be taken with food, or it can cause vomiting and having the PEG made is easy. Pain meds will cause constipation, so be sure to stay on top of that, or it can lead to vomiting. She also used a portable suction machine, since she lost the ability to swallow it made cleaning the saliva out so much easier. Hope this helps and I wish the best to your dad and you.
Nancy
Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
| | | | | Joined: Sep 2008 Posts: 7 Member | | OP Member
Joined: Sep 2008 Posts: 7 | Hi....just want to thank everyone on this website for their support and encouraging words. My father after being diagnosed with SCC in tongue and left jaw and 9 months of pain and suffering passed away on June 2, 2009. He fought hard and did whatever he could to live for him as well as his wife and us children. He went thru surgery to remove 80% of his tongue, removal of left jaw, bottom of mouth. He went thru chemo and radiation. Cancer moved to right side. He went thru the first round of chemo which did not work and brought his cells way down, finally strong enough he went thru Erbutux chemo along with radiation, this ultimately brought his body to where he could not tolerate anymore treatment along with severe burns from the radiation. He was hospitized for a month and came down with pnemonia. It has been very very difficult for me to accept his death, I pray everyday for peace. Again, thank you all.
Leonard C. Alvarado Son of Cruz F. Alvarado | | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | I am so very sorry for your loss. I lost my mom to pancreatic cancer and I know there are no words to make the pain go away. It hurts so bad to watch our loved ones suffer so much and the end result be the same. Please take comfort knowing that your dad is no longer suffering and is in a better place.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Leonard, we are heartbroken for you and all of Cruz' family. He put up a valiant fight against this horrible disease and I too pray that you find the peace that will eventually come your way. Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Leonard, youhave all of the sympathy that I can muster. I watched my mother fight it for a few months and was by her side with my bothers and sisters when =she died, I knew she was going to a better place by the smile she hadand apparently she dsaw her nmother who died when my mom was born. There just has to be something to the better place.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Leonard,
Your dad was a very brave man to endure all that he did to try and beat this cancer. I am so sorry that it wasn't enough.
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 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Leonard,
I'm so sorry to hear about your father. He was a very strong man. I hope peace comes to you soon.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | I am so sorry for your loss. Many thoughts and prayers to you and your family.
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Leonard -
I am so sorry to hear of your father's passing. My father also died after an extraordinary battle against lung cancer. After many years, I've come to realize that his fight, not his death, defines him for me. I pray you find the strength and peace you seek.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
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