| | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Matt's PET was back on the 1st. They changed procedure so we didn't get a disc the day of the scan this time. We are truly being left in the dark until the doc visit on Thursday.
I called the nurse both Friday and again today and she says no results are in the file yet, then asked me why I was calling...
... the answer to that she obviously wouldn't understand... so i just told her we were accustomed to getting the disc and having some idea of what was going on...
I of course think the worst and there's some big red note on the file that says DONT TELL THEM... and the doc has some terrible news to break...
I know, it can still go the other way. I'm just not an optimistic girl today.
Cancer sucks....
CMM
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 2011 Posts: 131 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2011 Posts: 131 | "Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid."
Try and put it out of your mind. In previous dark times of my own, I often found myself spinning round and round the same thoughts over and over. I found it helpful in those moments to deliberately and literally tell myself "don't think of that right now" and then force myself to focus on something else. It helps for a while, at least it does for me.
My prayers are with you right now, this very second. I am praying for peace for you most of all in this moment. Peace of mind, peace of soul, peace in your heart. I am praying for the deep breath of release. That right now you can exhale, and let some tension go. That you can close your eyes and breath slow and easy and let it fade away for a while. Be an easy, cool breeze on her mind Father.
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | | Joined: Dec 2010 Posts: 99 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 99 | I agree with you - cancer sucks!!!! Hang in there, only one more day.
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: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Okay... so lungs are slightly improved after six months of chemo... is all this being knocked down in the dirt worth a slight improvement???? He thinks so... so on goes the chemo...
destructive highly metabolic lesion appeared in pelvic bone since the last PET in May. Doc says don't worry about it and recommended a chemo holiday of two months or so....
Matt's a stubborn one though and terrified to boot... he'll keep going through this treatment till it kills him I'm afraid.
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: Mar 2011 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 26 | Sounds like you two are fighters and it is showing results...improvement in the lungs must feel somewhat encouraging. What about the pelvis. My husband has metastasis to pelvis as well. He is on chemo but I still wonder if some radiation might shrink the cancer there?
Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial
| | | | | Joined: Jul 2011 Posts: 131 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2011 Posts: 131 | The determination of the human mind to sustain the body has been greatly noted in the overall survivability of crisis events. Fight and fight hard. Play him some Rocky music, loops of Braveheart and Gladiator moments. If he is using his fear to drive his determination, go with the positive and push that drive to survive. IMHO.
And some improvement is better than none or worse. So...
here's a fight song!
Fight Fight like a wildcat
Fight for your right to be you!
Be the champion you can be
Hey Matt you can't be beat!
So fight fight fight for tomorrow dude!
On the road to your goal, victory!
You will scratch em, claw em, bight em till the battle is won
And you bring home that clean CT!!!
GO Matt!!!!
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I agree - improvement - however slight is a good thing. I understand your husbands desire not to stop and give his body a break he's probably not wanting to waste all that he's managed to accomplish. As long as he's remaining healthy and getting appropriate nutrition, then it's bes he do what he feels will help. Sometimes mentally doing something beats waiting! Take care and many blessings to you!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | in regards to the pelvic bone.. he's had a previous lesion there before and they radiated it with little to no side effects.
I am not sure if this can be done again, and for now, it's shelved for at least a few months while the chemo continues until the next set of scans.
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: 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 | Im a firm believer of positive thinking. Sounds like Matt is too. Congrats on him making some progress. Any improvement is helpful. Best wishes with Matt's continued improvements.
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: Dec 2010 Posts: 99 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 99 | I believe I understand your feelings. I remember your posts from earlier times this year. What a swinging ride - I do not think anything can really prepare us for the emotional journey either us as caregivers or our loved one go through. Just friends here who have been there (or are there too at the moment) and can tell us we are "okay and normal" with whatever emotion we are dealing with at the moment. Take care!
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.
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