Hi everyone, I'm new here today and desperate for help!
My mum, who is 80 was diagnosed with throat cancer around 7 weeks ago, tonsil cancer that has spread to the glands and is inoperable. She underwent 5 days of chemo from the 15 to the 19th of September 24 hrs a day on a drip. The idea was to shrink the cancer so you could eat and build strength for radiotherapy. This was completely ineffective and things have gotten much worse since the treatment. She is due to start 6 weeks of radiotherapy next Monday on the 27th.
She is now on a peg through which she gets all nutrition and hydration, things are so bad she can barely sip water. The throat is nearly closed and the mucus is horrendous, constantly coughing and gagging trying to shift it, the mouth constantly full of thick sticky stuff. She can't lie down and can't sleep.
We've tried steam bowls, salt and bicarb mouthwashs and nebulizer with saline solution but nothing really helps, im now upping her hydration because ive read this can help. All this before radiotherapy has even started. Right now mum doesn't want to do it because a) she can't lie down and b) it sounds like it will only make it worse. She is crying a lot and having panic attacks brought on by the difficulty in breathing.
We are desperate! Is there any medication that can help? We have looked at suction machines which could suck the mucus out of her mouth, why does no one use these? Is it an option? Is this a direct result of the chemo or an unavoidable side effect of the cancer? If she doesn't have radiotherapy will this eventually stop?
We are desperate for information and advise and are at our wits end. Thanks in advance for any answers to these questions and any words of wisdom.
Hi MattyC0ca2d5
Sorry to read about your mum’s situation. My cancer was inoperable too but radiotherapy fixed me and I am chasing 7 years clear. Your mum’s team must consider that there is a good chance the treatment will work or they wouldn’t be putting her forward for it. I must say that chemo is pretty hard on the heart so underneath all that is happening your mum must be a fit lady……
We are desperate! Is there any medication that can help? We have looked at suction machines which could suck the mucus out of her mouth, why does no one use these? Is it an option?
There is a drug called carbocysteine that is used off label to thin mucous. Quite a few people have used it and found it helped. Ask about it.
I know of at least one person, a friend here, who was given a suction machine and that was a real game changer. So get in to your mum’s CNS straightaway
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Is this a direct result of the chemo or an unavoidable side effect of the cancer? If she doesn't have radiotherapy will this eventually stop?
Only her team can answer your first question and I suspect that if she doesn’t have radiotherapy she will get worse.
I wish I, as a survivor of this awful disease and the equally awful treatment, could give your mum a hug and tell her that this is doable. When is she next being seen at the hospital and when does her RT start?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
As mucus is such a problem why do you think these machine's are not suggested and used more widely? I worried that this may ne due to the risk of them damaging already weak tissue.
I think it’s because most of the time all the other tricks to cope with it work but your second point is a very valid one. Maybe it’s something you could do for her rather than her trying herself ?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
