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.

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.

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.

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.

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.

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)))

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.

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.

Thanks for your reply. Sorry I haven't been on in a while. They tried him with everything for nausea, including medications they use in palliative care. Finally had to reduce the dosage of his chemo for the final 2 to get him to the end. He's 1 month out of chemo but still nauseas although far better than he was.

PET scan results came in today. The tumour has responded but not gone completely. No lymph node involvement though which is good. He starts immunotherapy in 2 weeks on Nivolumab. Hopefully it will help get rid of what remains.