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vnoel Offline OP
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Hi! I'm Tori and I recently joined and introduced myself in the introductions forum. I'm really not sure what my exact question is, but what I think I'm seeking is maybe some encouragement about the slog of the post-treatment phase. My husband is one month out from his last chemo/radiation and while the acute stress of that phase is over, we are both left feeling discouraged lately. Partly I think that has been how isolated we have been from other people who have gone through this, and maybe not sure how to manage expectations. The medical team has always been kind and sympathetic but vague about what to expect, and maybe that's because there aren't clear answers. My husband hasn't spoken or taken anything orally in two months, because his gag reflex is so shallow. He gags and wretches many times throughout the day, and has to spit a large volume of mucous out all day. Any attempts at speaking lead to a lot of coughing and wretching, so understandably he has become scared and avoidant. Neither of us has a real sense of how long this will take to move through, and if time alone will make this better or if he needs more specialized help. I'm sure many can relate to the feeling of running on adrenaline for months to get through these terrifying and painful surgeries and treatments only to feel like there's no end when its over. Thanks very much for your thoughts.


Caregiver for my 34 yo husband, diagnosed with SCC of tongue in 2/21. Had glossectomy neck dissection, and tongue reconstruction with tracheostomy and feeding tube placed 4/13/21. Tumor diagnosed as Stage IVb, followed by 33 RT and 3 rounds high dose cisplatin concurrently. Last treatment was end of July '21. We are parents to two small children and appreciate the support.
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Hi Tori,

I’m sorry you have the need to join the forum. The doctors might have mentioned to you that the radiation continues to work for about a month after the last treatment finishes. So your husband is in the very early stages of recovery. My husband had a different cancer and the treatment was not quite the same. I was going to suggest that you access the service of an SLP but then I read in your first post that he has seen one already and will be following up. The advice to continue swallowing is very good advice and important as the swallowing muscles may become atrophied if not used regularly. When John was in treatment, he was told to keep doing the swallowing exercises he had been given religiously. His RO said even dry swallows (without anything in his mouth, just the motion of swallowing) will help. So maybe your husband can start with that and slowly progress from there. Not doing the exercises may result in aspiration. My husband had silent aspiration and ended up in hospital with pneumonia. That could be dangerous. I would assume the same applies to speaking - start slow and make tiny steps forward. I used to put a lot of pressure on my husband to make him swallow but it resulted in his getting really frustrated. I would also suggest that you ask to see his oncologist again if his situation doesn’t improve. They can refer him to other specialists or prescribe anti-anxiety medication. Don’t be afraid to advocate for him.

Wishing you all the very best!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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vnoel Offline OP
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Hi Gloria, Thanks so much for your reply. I just spoke to the SLP over the phone today, and he was very helpful in helping break down a few mouth exercises to start with as baby steps toward swallowing. He also explained about trismus, which wasn't something we had heard of before. I think he is experiencing a version of that, and it sounds like it could get worse with time if left unaddressed. I'm finding that balance between encouraging and being pushy such a delicate one, especially as this gagging and wretching and threatened vomiting makes him feel so awful, so I'm sympathetic to the avoidance but also concerned about him losing skills or hurting himself in the long run. And also just burnt out myself from the non stop nature of navigating the medical systems and advocating for his care during these acute periods, as well as caring for our two little kids who are still in very needy stages. He started on a low dose SSRI mid treatment but that is a good idea to talk to the palliative team about--maybe he could use a higher dose. Thanks for the reminder too that he is still very early in the recovery phase...I think we are both so impatient but you are right that he is really in the infancy. The SLP said something similar--that even though he stopped treatment a month ago, he's really only just beginning to recover as the treatments stay in the body and keep working for weeks after. Thanks again for taking the time to write.
Tori


Caregiver for my 34 yo husband, diagnosed with SCC of tongue in 2/21. Had glossectomy neck dissection, and tongue reconstruction with tracheostomy and feeding tube placed 4/13/21. Tumor diagnosed as Stage IVb, followed by 33 RT and 3 rounds high dose cisplatin concurrently. Last treatment was end of July '21. We are parents to two small children and appreciate the support.
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Tori, did the SLP suggest using the TheraBite for stretching the mouth muscles if you think there are signs of trismus? It’s not cheap but I have read about people using a stack of tongue depressors in the mouth and slowly add to it as the muscles slowly relax. If you have access to a dentist at the hospital who specializes in oral cancer patients, I would suggest making an appointment to consult him about the trismus. If you have time, try searching the forum for more information on trismus or TherBite.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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vnoel Offline OP
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Thanks very much--I will ask the SLP about this at his next appointment. Yesterday when he attempted even a few of the exercises he was given, he threw up. But today went a little better. I'm not sure if it would have better or worse to know how challenging the post-treatment phase is upfront, but here we are confronting it now. Very encouraged by all the stories and resilience I've been reading on this forum.


Caregiver for my 34 yo husband, diagnosed with SCC of tongue in 2/21. Had glossectomy neck dissection, and tongue reconstruction with tracheostomy and feeding tube placed 4/13/21. Tumor diagnosed as Stage IVb, followed by 33 RT and 3 rounds high dose cisplatin concurrently. Last treatment was end of July '21. We are parents to two small children and appreciate the support.

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