Previous Thread
Next Thread
Print Thread
Joined: Jan 2014
Posts: 1
Member
OP Offline
Member

Joined: Jan 2014
Posts: 1
365+ days of cancer. It looked just like a canker sore on his tongue.
My husband is one of the never smoked, chewed a day in his life.
At age 53, he has had surgery, half of his tongue now with a flap, radiation, and they just had to stop chemo because of his 98 lbs.
A tracheostomy was just put in 2 weeks ago. He has a fistula in his neck that leaks all the time. The facial swelling is the worst of it right now, it creates head pressure, and headaches . I need a miracle!


365+ days of HNSCC
Joined: Dec 2012
Posts: 26
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Dec 2012
Posts: 26
Here's hoping you get one!


SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
Joined: Aug 2013
Posts: 15
Member
Offline
Member

Joined: Aug 2013
Posts: 15
I am sure so many of us are reading your post and want you to know that you are not alone!! We are sending our thoughts and "positive energy"/ prayers to you for your miracle, and for the strength that I know you may feel slipping at times!!


Caregiver to Tim(Best friend and love of my life)55 years young!!
Small BOT SCC (HPV+) with mets to 2 large and 1 "cluster" of right neck lymph nodes. DX 7/2013
Treatment started 8/2013. Completed 10/9/2013 IMRT 70GY over 31 days X2. Cisplatin X3 No PEG.
PET Scan 1/15/2014 NO Evidence of Disease
5/18/2015 NED with follow up visits to oncologist and Radiation oncologist every 3 months.
Cautiously Optimistic and starting on the journey to recovery!
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
A year seems a very long time from diagnosis to this point. Where is he being treated? (Based on your description he and I had the same type/location of cancer - oral tongue, tumor - removal of tumor, with rebuilt flap) I also had 40 nodes removed diagnosis was dec, surgery February, radiation completed may. That's a 5 month window. Unless they did the surgery and sent him home saying he needed no further treatment - I cannot imagine why this has taken a year to resolve.

He needs to up his calorie and protein intake - I am assuming they have him on a feeding tube at this point if they haven't put one in I would be screaming for them to do so. Nutrition is a very important component to this treatment and healing. (Protein facilitates oxygen transport and this facilitates healing - if the man is starving his body will have no energy to heal (fistula) or fight the cancer. There are several high calorie, high protein drinks (boost, ensure etc...) that he should be taking either orally or by tube (ideally both)

To be 98 lbs (unless he is 5 feet) tells me somewhere along the way he has been let down, clearly he needs more pain management and to get him ahead of the nausea - a different set of antiemetics. You need to push, and make noise.

Tell us a little more about his cancer... You said canker... To me that says non HPV tongue cancer. Ideally the treatment for this is surgery and the depending on the results of the pathology follow up with rads and chemo within 6 weeks of the surgery (healing time considered.)

Hugs and welcome


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

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5