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someguyjeff #192103 03-26-2016 09:45 PM
Joined: Apr 2015
Posts: 91
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2015
Posts: 91
I have been following your posts. I will be thinking of you, pulling for and praying for you. I am hoping the Opdivo proves to be successful. It must be hard to go through all of this, but know that so many people are thinking of you and wishing the best. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
someguyjeff #192606 06-16-2016 07:01 PM
Joined: Dec 2014
Posts: 55
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Joined: Dec 2014
Posts: 55
Thought I would give a quick update on where I am at with things. I am currently as of last week on hospice. The last 3 months have been down hill with the coughing and pain increasing. I was able to get three Opdivo infusions in before switching to hospice. I have checked off the boxes in my bucket list such as getting my youngest daughter to Floriday for her cheer finals. and then recently my oldest daughter to Vegas for her barrel races finals. They both did amazing.

Somewhere during the end of Florida at the end of April, I started coming down hard with upper res. problems. I was coughing so much and had a lot of pain in my lungs. at the end I was also coughing up blood. My doctors couldn't define any pneumonia but had my antibiotics and started my Opdivo. The coughing came and went and the Opdivo gave me mostly just fatigue the first week after. By the second infusion of Opdivo I was starting to get a lot of pain in my chest and they said it could be the Opdivo breaking up the tumors. The week preceding the third infusion I quickly went down hill. I ended up in the ER. I couldn't balance myself, walk, speak clearly, and my memory was shot. The last few days I was basically in a coma at home. I didn't remember anything and I couldn't speak clearly. It was like I just came out of a dream long to speak about the dream and went back to sleep. I hadn't eaten or drank in three days, and I couldn't hold my urine long enough to make the bathroom.

They determined I was too sick to receive any more Opdivo. I decided to sign up for hospice to get my strength to hopefully get another infusion someday. I can say one thing. I do feel better. I am gaining weight and my cough is virtually gone. I was on deaths bed. within hours. in a hospital. I am glad to feel better and have a possible chance at getting some more Opdivo down the road. If not, i am glad that I didn't die in the hospital way from my little girls.

If any of you have any suggestions or know any other way to go about this, I am open to suggestion.


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 #192607 06-17-2016 03:02 AM
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Jeff, I'm so pleased you recovered nicely in the Hospice. You sound good. It would be great to think it was the Opdivo making you feel worse before you felt better. Sounds as if they are taking good care of you.

Best wishes.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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