#77112 07-17-2008 09:04 PM | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Today is another day that I will never forget.
Dad had a CT scan last week and was scheduled for a PET scan today following his appointment with the H&N surgeon. The CT scan results were in but the doctor was running late so the PET scan has been rescheduled for Monday.
The CT scan showed two new tumors in his neck. There is another new tumor growing at the surgical site which is in the roof of the mouth. This tumor is extending up into his eye socket. His eye is now completely swollen shut. There are calcifications on the brain. The tumors on his neck drain and have a foul odor. He is vomiting daily and it's hard to get his nutrition in. He wears a fentanyl patch and takes percoset every 2 hours. He sleeps most of the day as he is too weak to do much of anything else.
There is no hope for a cure. Surgery is not an option. They are discussing more chemo and radiation. They say they will continue to fight the cancer until he say's that he has had enough. Unless the chemo and radiation will ease his pain he will not go through it.
So that's where we are. My only prayer is that they can keep him comfortable.
Thanks for listening.
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Joy i am so sorry to hear your news.I hope you can try and keep dad as comfortable as possible,and of course pain free.If you need to talk ,my e-mail is in my profile.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Joy, my heart goes out to your father and to you. What a long, hard road he has traveled. Please let him know that I have not posted often, but I have followed his journey, and I will keep him in my prayers. .....you too!
XO--COlleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
Joy:
Im so sorry to hear your father is doing poorly. It sounds like both of you are going thru a terrible time. Maybe the doc could increase your fathers patch so he wouldnt need the percoset. It may make him more comfortable. Can he keep anything down, even anti nasuea meds?
Does your father have a peg tube to help with nutrition? That might also make him feels a little better to stay hydrated.
I wish you the best with everything you are dealing with right now. I will keep both of you in my prayers.
Christine
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: May 2008 Posts: 73 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2008 Posts: 73 | Joy,
Your father is great man who has won a battle already and ready to take on another.
Best of luck , your in my prayers.
- Avinash
My Father,
Age 59, T2N1M0, Stage 3, smoker left 5 years back, casual drinker , NACT with TAXOL +5FU+Cisplatin x 2, and 70 Gy in 35# from 03/10/08 to 04/26/08, no surgery, After Chemo cycles tumor reduced 60%,
Cancer Free now !
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Joy,
As you know, I will be praying for comfort and peace for your dad while I'm away.
I will be in touch when I'm back.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Joy, I'm so sorry. You and you Dad are in my thoughts and prayers. Have you had any contact with hospice yet? They are often the experts at keeping someone comfortable in such an awful situation.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Thank you all.
Hospice has not been mentioned yet. He is currently in pain management. He sees the RO Monday. I'm sure we will know more then.
It's all so much to take in right now. I'm thinking of what he needs from a medical standpoint and I'm racking my brain trying to make sure that I know everything I need to say to him and let him know. And I keep thinking..is there anything else that I need for him to tell me?? I'm sure in the last 19 months I've tried to say everything that I need to and ask everything I need to, but I'm so afraid that I've left something off and that it will come to me when it's too late and I wont be able to ask or tell him something. And that's when the reality hits me.
I hate this.
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I am so very sorry that you and your family are facing such difficult times and decisions. Your Dad knows how much you love him. If you never had another conversation, he would know that. As far as medical questions, hopefully he will be able to participate in the decision making process.
We hate "this" with you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Dad went to the RO Monday and they have decided that radiation will help shrink the tumors and provide some relief. Today he had the simulation and radiation is scheduled to start August 11th. He will have 15 treatments at the most.
He's very weak and continues to get weaker every day. In two weeks it may be impossible to get him out of the house and to the hospital for radiation an hour away.
We should have the results of his PET scan soon. Just waiting on the doctor to call with an appointment time.
Other than that I don't know much. Thank you all for your PM's and words of support. They really help.
Hugs,
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hey Joy
just keep the faith girl.he might just surprise you about how strong he can be if there is a chance of some relief from his symptoms.
love and hugs liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
Joy:
Its encouraging to hear your dad has a treatment plan. Your family is in my prayers.
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: 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 | Wish him the best. I wish I could offer more.
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: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | After many hugs and tears yesterday we made the decision to not to put Dad through the radiation treatments.
We will be getting him into the hospice program where he will be kept comfortable until the end.
The cancer is still spreading in the neck and now one of the tumors is starting to extend upwards behind his ear.
To do radiation on him, we feel, would just put him through more pain, even though the radiation should help the pain - but then again, the drugs that hospice gives him should take care of that. We just thought that the end result is all the same, it just the means you take to get there.
His name is Jim, please keep him in your prayers.
Hugs,
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
Joy
What a difficult time this must be for your family right now. Your poor father has been thru so much already. The decision must have been so hard to make. I will pray for you and your family and of course for Jim.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Thoughts and prayers and hugs sent your way Joy and to all of your family.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Joy:
Thoughts, love, and lots & lots of prayers to your Father, you, and your Family.
Warm Regards,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Dad is still with us but continues to decline. Hospice will pay a visit tomorrow. Mom is now full of questions for her.
My mom is one amazing woman. She will be 76 years old this October. She only stands about 4'10" tall. I see so much love between her and my dad right now. She is an RN but hasn't been in nursing for years, so she knows from a medical standpoint how to care for dad, but she handles him with such love and tenderness. It's so beautiful, but so sad at the same time.
I know the end is near but I'm ready for dad to finally be at rest. I'd rather miss him for the rest of my life than to see him suffer like this.
Thanks for keeping us in your thoughts and prayers.
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Dear Joy, I assure you of my prayers for your dad and you and your mom. What a difficult time in your lives! I know from reading your loving posts and from our early correspondence what a very special, faith-filled family you are.
Please know that all of your OCF family are holding your family in our thoughts.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Joy, I am so sorry this is where your Dad's battle has wound up and I'm sure the decision to not put him through more treatment was a hard one for everyone involved. I hope hospie helps make your Dad's passing an easy one and that you have time left to share with each other everything that needs to be shared. Your mom is blessed to have you to help her through this time.
I just lost my father last fall and I know how hard that can be, no mtter how much warning you have. You are all in my thoughts.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Joy,
Your father is very fortunate to have such a loving family taking care of him at this difficult time. My prayers are with you at this time.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Dad has now been removed from all medication except for the hospice meds. He is no longer able to get out of bed and has a catheter. They will be delivering oxygen for him tomorrow. They have said that he has 2 - 3 weeks or less.
Colleen - I still have the first correspondence I sent you out here. You were a tremendous help after dad's surgery explaining how to clean the surgical area and other tips for dealing with the unique problem that you both shared. Thank you so much.
Thank you all for your thoughts and prayers. I know they are what is getting our family through this.
Hugs,
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: May 2008 Posts: 73 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2008 Posts: 73 | Joy,
Must say you and your family are a very strong , my dad has just become cancer free 3 months back , and even smallest swelling scares the hell out of me ....
your family will be in my prayer.
- Avinash
My Father,
Age 59, T2N1M0, Stage 3, smoker left 5 years back, casual drinker , NACT with TAXOL +5FU+Cisplatin x 2, and 70 Gy in 35# from 03/10/08 to 04/26/08, no surgery, After Chemo cycles tumor reduced 60%,
Cancer Free now !
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Joy,
I am praying for you and your family.
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
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