| | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | No diagnostic 'official' report, but I viewed the scans. There are yellow lit up spots in his throat, both lungs, along the chest wall at the broken ribs... cervical nodes?.... and around the heart, but likely that is part of lung tissue...
So disheartened and disappointed. I don't know what will be next.
Tomorrow is Matt's birthday. I'm gonna go all out. I am really hoping his daughter and grand-daughter come down to visit us. He could really use seeing their faces.
Monday will bring about the official visit and report.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | I am just sick to my stomach... I know just enough about PET scans to scare the hell out of myself looking at our disc copy.
I see lung spots, the chest wall lit up, the back of his throat lit up.... he's devastated. So tired. The next chemo option is said to be a harsh one, methatrexate or something I think it was.
Or we just wait until the cancer makes life too uncomfortable, then jump in for more chemo at that point. Although no one can tell us how far we are from that point.
This just sucks. I am not ready for this.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | My all time favorite question..."Are you okay?"
OMG the pouring out I could put upon someone who asks that one.
I just mumble 'uh huh' and go on with it...
This chick knows everything I am dealing with... I just spent about 15 minutes crying in the bathroom at the office... AM I OK?
Sheesh... Is a fking cheeta purple? NO I AM NOT OKAY dumba**.
Sincerely,
Christine
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | Christine - I can not come up with a single thing to make you feel any better. Words of encouragement seem out of place. All I can say is that you guys are in my thoughts and prayers.
Sincerely, Jennifer
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Christine - Sometimes there aren't any words that can soothe the cruelty of what you and Matt are having to endure. Just know that we care deeply and that our thoughts are with you. I wish I could be there to hold you and hug you and let your tears fall.
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: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | I called the nurse today who said that she'd track down the PET report for me today so we aren't in limbo all weekend and we may have a chance to prepare for Monday's MO meeting.
No news as of yet. It's Matt's birthday today. I am grateful for this day and that he has greeted it in a good mood.
Next week we go to see Ron White do a stand up routine....
It could be worse... I'm over my pity party, thanks for enduring it. I know you'll be there for me when it happens again.
Even when words cannot be found, the fact that someone else knows what if feels like and can understand means a lot.
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi Chris, Keeping you guys in my thoughts and prayers.
xoxox
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Dec 2010 Posts: 99 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 99 | Hi Chris
I too don't even know what to say...just know we are all keeping you both in our thoughts this weekend and hope, just maybe it won't be as bad as you are thinking. There could be a chance.
Take care. And I am amazed you are "over your pity party" so soon - this is the place where you can take as long as you need - Hope the birthday celebration was a good time and diversion for all!
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
| | | | | 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 | When asked if you are okay - tell the person that you are happy they care and that no, you are not okay. People really do want to help. Assuming you are comfortable with it - tell them you need a hug, or an ear, or just a good cry. Maybe they can find some soft tissue for you or lend a shoulder to cry on. Don't be afraid to tell people what you need - you will both feel better.
For now......((((((((((((((CHRISTINE))))))))))))))
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: Aug 2010 Posts: 75 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 75 | I think our situations are similar in many ways so I feel for you. I also get this question a lot too and always say "I'm hanging in there." Unfortunately we are in situations where nothing said can make it better and that's why people struggle with just what to say. It stinks that anyone has to go through this!
CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
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