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someguyjeff #191552 01-13-2016 08:15 PM
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someguyjeff,

I am not great at offering advice, but if I can I will say that you need to keep believing. Erbitux will help until you can get on a trial and things are changing every day. I am hoping to start a new trial tomorrow that didn't even exist when I was first diagnosed with Mets. I won't lie, the odds are not high, but anything is possible as you have seen here.

As for Erbitux - lotion, lotion, lotion! Bathe in it because that dry skin is a small but annoying side effect. Keep working on getting on trials if you can and if you want to - they offer people like us hope! I totally understand what you are gong through, I really do, and I would hate to see you resign yourself to defeat while there is still a chance, especially while you can maintain a good QoL.

Just one man's opinion,

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
TheHellion #191583 01-19-2016 12:25 AM
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Thank you so much. My MO is going to keep me on Erbitux for another 6 weeks as it look like for now it is doing its job. The rashes are getting pretty bad and my fingers and toes are getting infected under the nails and causing havoc. These are livable effects however and I will deal with them rather than the alternative of doing nothing.

My doctor wants to put me on Opivido when the Erbitux stops working. He offered to add another drug to the Erbitux but said that the side effects would be harder to live with and he couldn't promise it would do any better than Erbitux alone. So far I am not really having any symptoms from the actual tumors. My issues all stem from the Erbitux and from the prior radiation and surgery. I would love to find out about different trials that may be available, however I am hopeful that the Opivido will work well and provide me with some regression.

Seeing the post today about John losing his battle with lung mets is hard to take. I know he fought long and hard and survived longer than many.

The Hellion, you have also been fighting lung mets for a long time and now have further spread, and its inspirational to see people like you stand up and fight. It gives me hope that I can outlast the critics and norms. Like you, I am hopeful that one of these next treatments will be the one that works for good. I know the reality and I am grateful for each day as each day is one that was not promised.

I just hope to be able to get more time as my kids are young. There are many things left I want to do with them and that gives me the strength to keep pushing through the pain and take the next step.



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 #191585 01-19-2016 06:01 AM
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Posts: 110
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Keep thinking that. Things are getting better every day and someday they will figure out how to beat this thing. It is great you are still responding well to Erbitux - stay strong, there are worse side effects than those!

Keep doing what you need to do and keep dogging your MO to continuously look for outs and options - if something doesn't work, there are still other options, and you are young and strong - you can take a lot yet before you are beaten!

Lotion, lotion, lotion my friend smile.

Stay strong!


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
someguyjeff #191592 01-20-2016 05:15 PM
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Dear someguyjefff and Hellion,

Please, please do not feel discouraged because John passed. His problems since the end of June were silent aspiration and postural hypotension. Because of the former, he got aspiration pneumonia repeatedly. It was ongoing since July and he had antibiotic after antibiotic to fight it. Then he got a really serious bout which put him in hospital for sixteen days. The clinical trial with selinexor had to be halted because he was feeling so poorly. Then the hospital stay meant that he could not be given capcitabine -- the chemo that he was given after they stopped the selinexor. I believe that gave the tumors a chance to gain the upper hand.

We are fighting a war. John was but one warrior that fell, but there would be others who would move into the fight to keep the war going. Everyone who takes part in a clinical trial, irrespective of the outcome, is adding information and stats to the doctors and researchers' knowledge of the disease. We don't know what is around the corner.

What you can do is to keep in good physical condition. Eat and keep hydrated. If your body is stronger, even when you are suffering from side effects, you will be better equipped to deal with the debilitating effects.

I wish you both well and calmer seas ahead. I have lost my husband but I refuse to say cancer has won. Not yet.


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.
gmcraft #191599 01-21-2016 05:07 PM
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Quite the contrary, Gloria - John is still an inspiration - complications arise and I am sorry they touched you, but I have not given up at all. Though I am so sorry for your loss, I know you will always encourage us to keep fighting. I won't say I don't feel sorry for myself sometimes, but I know things are changing - I'm on the front line. Think of me as the next in the line - the next soldier in the fight.

someguyjeff, I know you will come to terms with your side effects - you have all of the right motivation. I also know what it is to be tired or scared or just plain depressed about it sometimes. I feel that way, too, but I can only encourage you to tighten your belt and keep fighting (which it sounds like you are doing smile )

The Hellion

Last edited by TheHellion; 01-21-2016 05:08 PM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
someguyjeff #191601 01-22-2016 06:40 AM
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Hellion, I am glad to hear that.


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.
gmcraft #191605 01-22-2016 08:47 PM
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Posts: 55
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I am inspired by the fight John took to cancer as well as you hellion. I can only hope to be able to give as much good information to the doctors and people working for a cure as you both have. I will fight. I have nothing else left to do but fight. I will be depressed and mad and every other emotion that comes with it, but I will always try to find that little thing each day that i can do in order to feel good enough to get to the next.


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 #191607 01-23-2016 05:49 AM
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Good for you, someguyjefff!


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.
someguyjeff #192100 03-26-2016 07:06 PM
Joined: Dec 2014
Posts: 55
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Wanted to leave an update. My latest scan shows that the tumors in the lungs are growing again. One of them looks like it is growing pretty fast. I have been on Erbitux weekly since November. I am not sure if that is a normal amount of time that it keeps the tumors at bay or not. My oncologist is going to have me switch to immunotherapy now. I should be starting Opdivo either next week or the week after. As this is one of the only ones that is FDA approved for this type of cancer at the moment, I hoping it works on me and that it works well for a good amount of time. If not then I hope I can get on a trial and keep this from killing me too quickly. I know the most probable outcome as so far there doesn't seem to be anyone who has put this in remission once it gets to this point, but there is a very slight chance that with the new drugs coming out in the near future I can squeak through. I feel like I am in Vegas putting all my life savings on red and spinning the wheel.


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 #192102 03-26-2016 07:47 PM
Joined: Jan 2013
Posts: 65
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Dear someguyjeff, So sorry that you are having to go through this. Was hoping and praying for no growth. Will hope and pray that the wheel spin wins the lottery. Like someone else said recently . . we are right there with you. Big hugs, Sheryl


Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
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