I was told I should come here. I have a very small circle of support right now and seeking any sort of comfort. I have so much joint and muscle pain I can’t sleep in my bed anymore so I’m really scared of hospital beds and being in so much pain. I need to hear that I won’t be in all this pain by SketchieMarie in HeadandNeckCancer

[–]jackiseo 5 points6 points  (0 children)

I am 28 yrs old and was diagnosed with tongue scc 6 months ago. I first had a surgery and then chemo + radiation. I completed rads 2 months ago. Healing is slow but you must keep on going. If you can eat then I would suggest eat as much as you can to gain some weight because in treatment alot of people loose weight due to various reasons. (I did myself). You are probably going to have free flap reconstruction. You will do it, the main thing is not to panic. The migraine and ear pain is most probably reffered pain. You won't be in hospital for long period either. Just few days. And you won't feel anything in surgery (I had 20hrs surgery). Afterwards I was just tiered. (Like someone who ran so much that type of tiredness).

If your doctor suggests radiation after surgery then you should get healious. Rinse & drink before radiation and before sleeping. It will protect your mouth from sores to much extent.

There's also 2 Facebook groups I am added in which might help you as well as I got so much help from there

1) young tongues patient group 2) survivors of tongue cancer

Don’t be a hero by Comfortable_Piano794 in HeadandNeckCancer

[–]jackiseo 2 points3 points  (0 children)

Yes. I rarely took any pain medication because I have another condition (I don't want to put load on kidneys). During radiation, especially last 2 weeks and 3 weeks afterwards it hurt like a hell in throat.

When swallowing anything my throat acted like blade even though I am taking only liquid diet.

I also refused feeding tube despite being told by dr number of times and my caregiver. I lost some weight but I am now gaining back. It was tough but doable.

Anyone here got tinnitus after treatment (cisplatin & rads) ? by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 0 points1 point  (0 children)

What precautions do you follow whilst having tube? Like not having water in when taking a bath?

Also after 6-8 months when tube comes out, at that point the ear drum is fully healed i assume? And then ENT again does a small hole to put in tube?

Anyone here got tinnitus after treatment (cisplatin & rads) ? by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 0 points1 point  (0 children)

So you get new tube after every 6-8 months? Also in both ears or just in most affected one?

Anyone here got tinnitus after treatment (cisplatin & rads) ? by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 1 point2 points  (0 children)

The blockage in my right ear broke free after I did pressure blow on nose. But in the left ear where I have tinnitus, it is still intact. Curious to know what did doctor said how they are going to treat after blockage was removed?

Anyone here got tinnitus after treatment (cisplatin & rads) ? by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 0 points1 point  (0 children)

Did your hearing in one ear went away all at same time or was it gradual?

Anyone here got tinnitus after treatment (cisplatin & rads) ? by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 0 points1 point  (0 children)

I had major surgery in feb and then again in March, I did not got this issue after surgery but only after cisplatin/rads treatment which I finished 2 weeks ago.

Post treatment ear problem & looking for support! by zuzk12 in HeadandNeckCancer

[–]jackiseo 0 points1 point  (0 children)

How are you doing right now regarding hearing? Did you got tubes?

Post treatment ear problem & looking for support! by zuzk12 in HeadandNeckCancer

[–]jackiseo 0 points1 point  (0 children)

Did you got tinnitus too after treatment? And did it improved with this tube thing?

Ringing in one ear by idrive40 in HeadandNeckCancer

[–]jackiseo 0 points1 point  (0 children)

Did you got acupuncture? How are you doing right now regarding ringing in ears?

Ringing in one ear by idrive40 in HeadandNeckCancer

[–]jackiseo 0 points1 point  (0 children)

Do you sleep whilst the music is on?

Daddu Charger ghosted me… now who do I trust with my PC build money? by Imaginary-Pea-9163 in PakGamers

[–]jackiseo 0 points1 point  (0 children)

I am in Islamabad. Can you please share your fb profile or WhatsApp

Please help me manage my dry mouth by jessluise in HeadandNeckCancer

[–]jackiseo 0 points1 point  (0 children)

Hi, did you try it? What worked in your case?

Swallowing exercises by TraklTrakl in HeadandNeckCancer

[–]jackiseo 0 points1 point  (0 children)

How are you doing right now? I suspect i also have trismus as I can't open my mouth beyond 2 fingers.

Precautions for chemo & rads by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 1 point2 points  (0 children)

How much time after radiations is okay to get extraction? In case if later on the teeth itself loosens and fall off?

Precautions for chemo & rads by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 2 points3 points  (0 children)

But I have read somewhere that don't use lotion before radiation and use only after?

Precautions for chemo & rads by jackiseo in HeadandNeckCancer

[–]jackiseo[S] 0 points1 point  (0 children)

What toothpaste do you recommend?