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https://drive.google.com/open?id=0BxM4roXfA4rjR0V2TXF5cnR0TDA

If this was your recent pet would you get 2nd opinion for treatment recommendation to wait 2 months? Or get a second opinion?

I have a copy of my latest PET scan (see link) It says
There has again been a progression of disease. Previously described nodules have enlarged and become quite intensively more hyper metabolic.

What would you do?

Last edited by larry6905; 06-07-2016 09:45 PM.

T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Larry, its not easy to answer your question. I have no doubt we all want to help you interpret the PET. Please understand that our group is made up of survivors/patients and caregivers, non medical professionals. We dont have years of medical education, training and patient experience behind us. We simply arent qualified to read the PET results to have a complete understanding of everything thats written. This is why its so important to talk with the attending physician and get the test results explained in detail by doctor who ordered it.

A second opinion is never a bad idea. Having a second set of qualified eyes look over all your tests, a thorough exam, and talk with you will help. To me, your case appears as a complicated one, if at all possible do you have access to a Comprehensive Cancer Center (CCC)?

List of CCCs


This may have already been discussed with you (and I apologize if its a repeat) but just in case it hasnt... have you looked into the new immunotherapy drug, Optivo? Please take a look at this thread, I hope it will be of some help to you...

Immunotherapy Trial/Drug

Best wishes!!!


Christine
SCC 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 smile
Joined: Jan 2013
Posts: 1,291
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Hi Larry,

Since the lung is showing progression I would get a second opinion right away. Certainly waiting 2 months is too long.

Go to the best facility you that will accept your case. Get all your documentation together, organized, and copies ready to send.

MD Anderson is one of the best and is in Texas so not too far. There are some well known places in Florida. Memorial Sloane Kettering and Johns Hopkins are very good. Check the list Christine has posted. Good luck.


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
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I live in the black hole of national cancer institutes. If I am to do a clinical trial I will have to move there and would only have my wife's support. I am at least 315 miles away approx 4 to 6 hrs away.

I did ask oncologist to try to get Opdivo on a compassionate care basis. Still haven't heard anything.

I also sent my info to UAB in Birmingham as it is closest. I haven't heard back yet.

I am told I have a difficult tumor type. I am not being treated now. I feel like I am just suppose to wait and die.

What does one do in this situation? I have tried numerous avenues for help and housing to no avail.

I saw my PET my lungs are covered with lots of nodules.

I have developed a deep continuous cough.

Last edited by larry6905; 06-25-2016 09:17 AM.

T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
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Maybe this link will be helpful. It has a few places that offer assistance with travel such as free airfare and next to nothing housing near the CCCs. There are things out there but it takes lots of leg work to connect with the right ones.

Hope this helps.

OCF main site-- Financial Assistance


Christine
SCC 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 smile
Joined: Nov 2014
Posts: 73
Supporting Member (50+ posts)
OP Offline
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Joined: Nov 2014
Posts: 73
I begin treatment with Opdivo on July 8th, 2016. My oncologist here at home agreed to try and I applied for a compassionate care from Drug company and received for 2016.

I have developed a deep cough which is almost continuous. I have been taking an antibiotic, I'll finish today.

Thank you for all your help and if anyone has experiences with this treatment feel free to share. My primary was base of tongue nov 2014 which metastasized to my lungs in 2015.


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Hi Larry, it's good to hear you are finally going to get Opdivo. Being treated at home means your wife will be getting the support she will need. I hope with all my heart you will benefit from the drug and that things move smoothly. I am keeping you and your wife in my thoughts.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Nov 2014
Posts: 73
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Posts: 73
Hello everyone I'm on 4th treatment of Opdivo and doing great. Have good quality of life, tumors shrinking, coughing gone and energy back. Loving life right now!


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
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Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Hi Larry,

I was scrolling through the posts yesterday and came across the one that your wife wrote on your behalf a while back. It started me wondering about how you were doing and this morning I saw the positive news! I can't tell you how wonderful it feels to know that you have found something that works for you and gives you back your quality of life. Please keep us posted and enjoy the lazy summer days we are having now.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Congrats Larry!!!

Im so happy you are feeling good and having success with Opdivo. Please stop back from time to time to give us updates. This is soooo helpful to others who are struggling in their fight.

Thank you!!!


Christine
SCC 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 smile
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