Previous Thread
Next Thread
Print Thread
#200761 04-01-2021 01:11 AM
Joined: Jul 2009
Posts: 450
WendyG Offline OP
"OCF Down Under"
Platinum Member (300+ posts)
OP Offline
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Jul 2009
Posts: 450
I'm sad to say my husband's cancer has returned. He beat a stage 4 diagnosis in 2009. He has been left with ORN to lower and now upper jaw. We've been advised from numerous specialists that the ORN is too advanced for any kind of treatment so we've been getting on with life as well as we can. Late last year my husband Steve started to develop pain in his tongue again. A scan showed a 2.5cm lesion in his tongue that has since been confirmed SCC.

Surgery was offered but chances of it coming back again are high plus Steve would be facing a lot of issues with quality of life afterwards as well. More so than he has already faced over the last 11 years and he has plenty of them. Anyway Steve decided against surgery as he struggles enough daily already so going through more when odds are it will come back just doesn't make sense to him. He can't have radiation as he had it last time. So he has started chemo and is 2 rounds in. He's having 6 rounds of cisplatin with 5fu. He is a good candidate for immunotherapy and that is next for him after chemotherapy. Our biggest issue with the current treatment he's on is nausea. He has been so unwell with it his weight is now 48kg (105 pounds). He has no more weight left to lose.

The doctors have told us there will be no cure but they said that last time and we've had 11 additional years. We're very sad to be back in the fight but are giving it everything we have.

Does anyone have any advice for nausea at all? He can't eat many things due to a pectoral flap, current tumour and no lower teeth. He doesn't have a peg, can drink and swallow ok still. He doesn't like ginger, has tried numerous anti nausea meds and is on a clinical cannabis trial (we're in Australia so access to cbd isn't very easy which is why we're taking part in the trial).

Anyway, here we are again. Battling through each day the vest we can.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: May 2013
Posts: 63
"OCF Kiwi Down Under"
Supporting Member (50+ posts)
Offline
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Joined: May 2013
Posts: 63
I’m so sorry to hear your husbands cancer has returned after such a long time. I’m 8 years free myself so I can only imagine how you’re both feeling.
I remember struggling with nausea during my treatment and the little and often method worked for me. The nausea wouldn’t go away but I managed to drink little bits all the time and lived on medical nutrition shakes for quite a while.
Best wishes with the treatment.


39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads
Joined: Jul 2009
Posts: 450
WendyG Offline OP
"OCF Down Under"
Platinum Member (300+ posts)
OP Offline
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Jul 2009
Posts: 450
Thank you for your kind words. We're still working our way through the nausea issues. Not much relief for him yet but each treatment is slightly better than the one before so that's something at least.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: Jun 2019
Posts: 62
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jun 2019
Posts: 62
So sorry to read about this situation. If the Zofran (Ondansetron) and other oral anti-nausea medications don’t seem to be working, maybe eating small spoons of crushed ice chips would give some relief. I’m not sure if they actually know why ice chips works for nausea, but on occasion it does give relief as long as it’s not contraindicated with what’s going on orally with him.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019

Link Copied to Clipboard
Top Posters
ChristineB 10,502
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
rkinjo, Garvin, KathDE, Darcy67, MJK
12,622 Registered Users
Forum Statistics
Forums23
Topics17,903
Posts195,722
Members12,622
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5