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#200761 04-01-2021 01:11 AM
Joined: Jul 2009
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WendyG Offline OP
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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
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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: 452
WendyG Offline OP
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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
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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
Joined: Jul 2009
Posts: 452
WendyG Offline OP
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Thank you for that suggestion. We'll definitely give it a try. He was on a cannabis oil trial to help with the nausea but we've found in the last week it's actually making it worse so we are at least getting a slight reduction in the nausea now and his daily vomiting has stopped thankfully. He has a scan scheduled in 2 days to see how hes progressing and if the chemo isn't working they'll be switching him to immunotherapy. Not sure on side effects from that yet but we'll tackle them if we head down that track.


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 2007
Posts: 10,503
Likes: 1
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Oh NO!!!! Wendy Im so sorry!!!

Best wishes with every single thing you both are going thru! I know how difficult this is and just how hard it can be to look on the bright side. One positive thing is after so many years of OC dealings, you are so knowledgeable and are a great asset to help your husband with all the OC things. Always remember, there are exceptions to everything and one of the biggest things we always say around here.... "everybodys different" There arent many 3 timers around but Im sure happy to be included with several who are also long term survivors who are OC exceptions.


((( HUGS)))


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
Joined: Jul 2009
Posts: 452
WendyG Offline OP
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Thanks Christine. We're getting through it one day at a time. He's had 4 doses of chemo and is having a full cycle break before the remaining two. He doesn't have a peg this time and is extremely thin. The side effects from the chemo have been very tough. I think his remaining 2 cycles will be a 25% reduced dose to help get him to the end. From there he will go to immunotherapy if chemo hasn't been successful. It does help that we've been down this road before but at the same time it doesn't if that makes sense. Having prior knowledge is a good thing but not a good thing in some ways. But he's beaten the odds before so I hope he can do it again.

Last edited by WendyG; 05-27-2021 03:10 AM.

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: Dec 2018
Posts: 5
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Posts: 5
Hello Wendy. I would be curious to know what anti-nausea meds he's tried. I saw Zofran mentioned. And I saw that ice chips/ginger/CBD were also suggested but none of that worked for me. Here's what did:

Zofran (ondansetron) 8 mg three times a day for 3 days starting day of treatment
Decadron 4 mg twice a day for 3 days starting day of treatment (taken with food)
Compazine 10 mg (prochlorperazine) every 6 hours as needed

I was asked to stop Decadron after 3 days but to continue with Zofran and Compazine as needed. And it was. I also tried cannabis (not CBD but THC) and it was helpful in providing me with a good nights sleep. Later, four or five days after a cycle when things started to settle, it sometimes stimulated my appetite- that's when I would lean on anything I could get down and really try and pack in those calories. If he can swallow then bring on the milkshakes.

I was also given a shot for nausea which I don't remember the name of- it was in a little box that was taped to my upper arm. It was on a timer and went off 24hrs after my cycle. I can find out the name of it if you want. I was still in a flop sweat half the time, clammy and uncomfortable, dizzy and tired and without any appetite. But I didn't throw up. It wasn't easy but it helped. I'm sorry he's having to go through all this again. Hang in there.


THE KILLER INSIDE ME: Five years ago, I became one of the thousands of men diagnosed every year in the U.S. with HPV-related throat cancer.

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