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#190941 10-13-2015 11:44 PM
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I do not post much on here but I have used the knowledge I have gained by reading here greatly. It is without much happiness to say that I am now in the spread to lungs crowd. Its been a year since my first diagnoses, about 7 months past treatment. The treatment has left me with extreme trismus and dry mouth along with limited neck movement and many other things that don't matter much anymore. I do not know yet as to my prognosis except that basically no one has survived this spread to the lungs. I do not know if I will post much but i will read from time to time. I just want to thank everyone for what they have shared and don't worry too much about me. If you pray, then pray for my young (9 and 11) daughters. They are strong but they will need the prayers and all they can get after I am gone. Bless you all and thank you all again.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
someguyjeff #190946 10-14-2015 08:04 AM
Joined: Jun 2007
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Jeff, Im very sorry to read your post. Im hopeful that there will be some sort of treatment available to help you. Wishing you and your family all the best.


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
someguyjeff #190948 10-14-2015 11:47 AM
Joined: Mar 2002
Posts: 4,853
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Jeff - I am sorry to hear about your situation. There is a brand new drug from Bristol Myers Squibb called Opdivo (nivolumab). I would ask your doctors about this. I watched this go through clinical trials and it was later fast tracked by the FDA for lung cancers in patients that had had previous platinum based chemo. It was targeted for non small cell lung cancers. You don't comment about your specific diagnosis, but even if yours was lightly different, this is a drug that works with your own immune system and it might open up a pathway in other lung cancers for an immune response. It had some pretty good results though it didn't work for everyone. If your cancer is a variant of this, you may still get someone to try it off label. That might be a hail Mary idea, but I've always said I'm not going to go quietly into the night. It think it is at least worth talking to your doctors about sooner rather than later.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
someguyjeff #190949 10-14-2015 11:51 AM
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Here's a link to the package insert
http://packageinserts.bms.com/pi/pi_opdivo.pdf


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
someguyjeff #190954 10-14-2015 12:49 PM
Joined: Dec 2010
Posts: 5,260
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I hope he checks it soon. Some guy.. you're young and while lung mets is a grave dx, there are people here right now going through trials and fighting it. look at trials and see what is available to you. Particularly what Brian suggested. Don't give up just yet you have two children to fight for.

Hugs.


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
someguyjeff #190958 10-14-2015 03:16 PM
Joined: Jun 2007
Posts: 595
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Hang in there and give all you have to this fight!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
someguyjeff #190961 10-14-2015 06:14 PM
Joined: Dec 2014
Posts: 55
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thank you everyone. I really don't want to just lay down and take it but I know there is no success in the normal standards. I will look into my trial options and anything else. I will fight. I will enjoy my last few months years or whatever I've got. I hope I get a long time. I am not sure if there is a proven way to at least extend life while not making yourself sick and not able to enjoy it.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
someguyjeff #190962 10-14-2015 06:22 PM
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Posts: 10,507
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Im glad you are open to suggestions.

When having children that depend on you it makes a difficult decision even harder. I cant say I have been in your exact situation but I was facing a choice of fighting or packing it in when I was diagnosed with OC for a third time in 3 years. I almost quit and let nature take its course. I also have had spots on my lungs for the past 7 years. Luckily the 'spots' have not changed at all so my doc isnt concerned. The members of the forum helped me to understand even against the odds, I couldnt just quit until I gave every option a try. I hope you will continue to fight even if you have limited options.

Please keep posting. We all care and worry when one of our own is sick. No matter what path you choose, we are here to lean on. Feel free to vent if you feel the need. We're in your corner.

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
someguyjeff #190968 10-15-2015 07:44 AM
Joined: Dec 2010
Posts: 5,260
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Look at ZendaT, GmKraft, Stilty. I think they are all involved in lung mets. Zenda has been around a while. There are a few more as well. Ideally you get into a trial and are able to extend your life for as long as possible and potentially something or someone will come along with something that is successful.

There was a guy in Nova scotia here with a liver tumor that was wrapped around his liver in such a way that it was inoperable.
He went through all conventional treatments and in the end they told him go home to die. (they gave him 6 mos)

He looked into a different treatment offered at a hospital in calgary (clinical trial?) did the full regime. I didn't shrink the tumor just stabilized it.

He finished they said we've done all we can do. go home.

He went back home. His wife put him on an alkaline diet. and he lived his life hoping that something else would come along before he got worse. Jump ahead 10 years. (he had small kids too) they'd moved to Toronto and he told his new family dr. about his situation - they sent him to princess margaret thinking maybe he should be assessed again. they too said... there's nothing more we can do. It's inoperable.

Well then his dr. referred him to a transplant specialist who was doing amazing work at toronto general.

the dr. decided to try and operate.

removed the man's liver and lowered it's temperature to the point where there was no cell damage. Then he operated on the liver alone (like they would when they do a transpant) and was able to remove all of the tumor.

Now he is cancer free.

it's all about holding on.

As a side note. They don't know why his tumor stabilized... the clinical trial he had was short - 6 months. he changed his habits and lived on his diet for 10 years with no tumor growth.

regardless. He is looking forward to seeing his kids graduate and get married.

never give up.

hugs.


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
someguyjeff #190969 10-15-2015 04:13 PM
Joined: Dec 2014
Posts: 55
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Posts: 55
Thank you everyone again. I don't want to fill myself up with false hope but it does give me some encouragement and some more will to look for trials. I would love to get a few more years added on without too much quality of life issues in order to be around for another breakthrough. Ill update my sig to show current status.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
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