| | Joined: May 2010 Posts: 135 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Oh Callie, I am so sorry about the bad news. I will keep you in my thoughts and prayers. I hope that Don's doctors are hooking you up with hospice. Some help from them would be beneficial for both of you. Sometimes it's hard to ask for help and to take care of yourself when you are so accustomed to focusing on Don.
Bless you !
Dodie
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 114 | Oh Callie, I'm so so sorry to hear this sad news. Sometimes this disease just moves too damn quick 
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Callie, I am so sorry for the latest prognosis. Oral cancer is such a terrible disease! It can be a very fast moving deadly disease. Hope you are able to spend some good quality time together. Hospice would be a very good idea.
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: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | I am so sorry to hear this. I hope you can spend some quality time together as a family and make some memories for your kids. I know how hard it is to deal with all of this with little children. They are here for a reason though, they are such a good distraction and they will carry on their daddy's legacy.
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Callie - I'm so sorry to hear of this latest sad turn of events. Sending prayers your way and hope that in the days ahead there will be some peaceful moments for you and Don and all your family.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | Oh Callie, I am so sad to hear this news. Are they offering Don any chemo to slow the tumour growth down and give you all more time? Hospice and the many services they offer is a good idea for you all.Treasure every moment. Love each other heaps. Wish we could help you more.
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: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear Callie,
I am so very sorry to hear this devastating news, especially for such a young family. No one should have to endure these things. It makes no sense to me at all.
I hope that you all are able to share lots of special moments that will last a lifetime. I agree with everyone else that hospice can make all the difference in the world when a family is going through the end of life process.
I wish I could take it all away. Hold each other close and feel the love.
Please come back for support whenever you feel up to it. We are always here for you. Please do something to take care of yourself and spend some time doing something fun with your kids.
With great care,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Callie,
So sad to hear your news. Is Don in pain or is it being contolled? Like everyone has said, I pray that you will have wonderful memories to help you through this. If he feels up to it, maybe he could do a video type thing for the kids to have forever? Please know you are in our thoughts and prayers.
Kathy
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Callie, I was in Dons exact position just a few months ago. I had received a second round of radiation at U of M for a tumor that was wrapped around my carotid artery and the treatment didn�t get the whole tumor. U of M said I could receive no more radiation and surgery was not an option due to the artery. In short they offered me palliative chemo to end my days. I went to MD Anderson for a second opinion and they agreed with U of M. I went to Memorial Sloan Kettering for a third opinion and got the same answer. I then went to the University of Pittsburgh for a forth opinion and they said they had a trial going for late stage, pre-radiated, non-operative head and neck tumors using Erbitux and cyber knife radiation. They have devised a radiation protocol that allows for additional radiation even when all others say that is not advisable. I went through the treatment at U Pitt in May. This consists of four treatment of Erbitux and 5 radiation treatments over two weeks. My tumor was in my neck and measured 3 cm by 1.7 cm so it was big. I had my two month post treatment PET/CT scan two days ago. The scan was clear. If there is any chance you can get your film to U of Pitt have your doctor put together the latest PET or CT scan on a CD and get it to: Dr. Robert Ferris Email; [email protected]Address: Eye. Nose and throat specialist 203 Lothrop St. Pittsburgh, PA 15213 Ph: (412) 647-2100 Send him an email ASAP and tell him Tim Simon sent you. Get that film to him ASAP and he should let you know if they will take the case in 48 hours or less. Keep in mind that I had three of the top head and neck cancer specialist in the US tell me I was dead. I have a clear PET scan from Pitt that proves them wrong. P.S I passed out on my kitchen floor some months ago. The paramedic could not even get a heartbeat. At the hospital they said it was 30 beats a min. They were not sure what it was. I scheduled a PET scan and found out I had a recurrence. The tumor was pressing against the vagal nerve making my heart beat slow down. That�s how I found out my cancer was back. Hope this helps.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Great news, Kelly! Best of luck with winning the war and congrats on being a great self-advocate!
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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