| | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 |
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Cheryl,
First I want to send you a big hug and let you know that you're in my thoughts. I'm so sorry for what you're going through. I've found hospital social workers or a licensed psychologist to be extremely helpful during difficult times. All my best, D
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
| | | | | Joined: Jan 2014 Posts: 2 Member | | Member
Joined: Jan 2014 Posts: 2 | Cheryl,
Hi. My Mother is going through allot right now. I have 2 sisters and a father. We are all taking care of her and are all exhausted. I keep telling myself to not have any regrets. Which my sisters remind me daily also means to not be too exhausted to take care of myself. I can only say you are doing an amazing job a taking care of him. Remember to take care of yourself. I have talked to my doctor about medication for myself. It has helped with my ups and downs. | | | | | Joined: Nov 2013 Posts: 17 Member | | OP Member
Joined: Nov 2013 Posts: 17 | Hi all,
We're still here, though things have been very bad.
Our current Cancer has done all they could and has sent us to a new place an hour 15 minutes away.
Doug had a lung biopsy today to determine if the original cancer has metastasized there or if we are a fighting a completely different cancer.
Either way they aren't waiting and we are starting a different chemo regimen at the new CC tomorrow morning.
This Dr like the 3 before her said there isn't any hope, but to try chemo to see if it can reduce the tumor to reduce the pain.
He is in so very much pain now it's just awful. We've tried the Fentanyl Patches and the only thing it did was make him sick, so we are back to Percocet, Morphine and Methadone and he's still in such terrible pain.
I've tried again to talk him into Hospice, but he just isn't ready.
I don't know what else I can do except to be here for him as I always am.
Still scared, still lonely and oh so tired.
Cheryl
1st post under(Introduce Yourself Re:I've waited too long)
Caregiver to Doug
Dx 8/31/10
Stage 4 HPV(?) SCC Tonsil, Tongue, Jaw and Lymph-nodes
98% Glossectomy
Bilateral Neck Dissection x 2
Trach and PEG indefinitely
Palliative weekly Chemo
Carboplatin-Pemetrexed-Erbitux
| | | | | Joined: Nov 2013 Posts: 17 Member | | OP Member
Joined: Nov 2013 Posts: 17 | Hospice has now been called in. Still scared- how can I be losing him. I'll be a widow before I'm 50. Panic attacks come frequent, hard to let go.
Cheryl
1st post under(Introduce Yourself Re:I've waited too long)
Caregiver to Doug
Dx 8/31/10
Stage 4 HPV(?) SCC Tonsil, Tongue, Jaw and Lymph-nodes
98% Glossectomy
Bilateral Neck Dissection x 2
Trach and PEG indefinitely
Palliative weekly Chemo
Carboplatin-Pemetrexed-Erbitux
| | | | | 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 | Cheryl, glad you checked in. Its been a while, I had wondered if everything was ok.
Im so sorry about your situation. We are here for you.
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 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Cheryl,
I am so sorry to hear this. Where are they doing the hospice? The hospice people we had with my Dad were wonderful - I hope that that your team is also good. Please keep us posted.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi Cheryl,
Thanks for taking the time to update us here. It is very sad news to learn Doug now needs hospice. They server an essential service so please embrace all the support they offer and have available to help.
At this point, taking one day at a time is helpful. Enjoy what the day offers and hope the next will be at least as good if not better.
Best to you and Doug.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Cheryl,such a heartbreaking story. This disease has been relentless for Doug and he has gone through so much. As have you. You have walked every step of the way with Doug, every step. You really are an amazing Woman.
As this journey comes to it's conclusion, breathe. Try to enjoy each day and moment you have left. Let Hospice do the caring. Let them look after you too.
I understand your panic and the not wanting to be left alone. It is far too young to be widowed, way to young. It's not fair that this disease has robbed you and Doug of 30 years of living and loving.
I want to tell you that will get through this, you will, in time.
I pray that your families gather around you now with support and love.
In my thoughts,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Praying for miraculous strength. It's heartbreaking to hear of Doug's physical pain, and your emotional pain. It's a very hard load to bear and like everyone said above, please take from those who are willing to serve. Lean on your loved ones.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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