Symptoms returning after Chemotherapy and Radiotherapy - is this normal?

Hello Chris,

It's Graeme my friend.

Your poor mother is showing almost exactly the same symptoms as my mother has. And she only had Radical Radiotherapy, no chemo as it was deemed a big risk due to age. So I just wonder if radiotherapy is the culprit, ignoring the chemo side.

So my mum completed 20 shots of RR on Dec. 24th, she felt ok for just 1 week, then the symptoms you describe started. But after about 3 weeks she also seemed to turn the corner & she even gained weight. But this was short lived & all of your precious mother's symptoms returned exactly & almost word for word what you describe.

This is the good part: a nurse from our local hospice visited last Wednesday as requested by our GP, & mum was exhibiting these symptoms during the nurses 1.5 hour evaluation. She asked what we did to get these issues sorted. I told her mum had a salt water mouthwash 1st thing in the morning to thin the mucus. The nurse was horrified. So now we don't do the salt wash, instead mum rinses a medium glass of half warm water with half a normal mouthwash like Listerine. Next, mum takes 2 soluble paracetamols in warmish water & drinks them. And even if there is no pain, still do it for it's anti inflammatory qualities (This is essential).. And do this 4 times a day. Then mum drinks (no feed tube used) her ensure as the thick mucus has really thinned out. With the salt rinse, mum would spend about 1 hour thinning this mucus, this method is much kinder & a lot quicker. Even wait 1/2 an hour before food if you want.

The pain is exactly the same as your mothers, front to the back. The soluble paracetamol takes care of this too, & amazingly mum hardly uses her Oramorph. 

The nurse said get some ginger or lemon biscuits & dunk them in her tea or coffee. And try to drink as much as possible all day. Also try crisps that melt such as Skips. Back to drinks, get pineapple juice without bits in it, this is the best mucus thinner you can use. Just have a glass by your mum for quelling anymore thick mucus. I can confirm that this is better than any anti mucus med's. 

Finally, raise the pillow end of your mothers bed by putting 6 to 8 inches of books under the beds feet. So if your mum was to slip down during her sleep, the bed is always at a raised head angle, so no pooling of mucus. You can raise it as much as you like, maybe to a maximum of 20 degrees. And have her take a few sips of pineapple juice & the last dose of soluble paracetamol just before she lies down.

If at any time you are unsure about anything else, the hospice nurse will give you her phone number. And they have a 24 hour number for out of hours advice.

I really hope this is helpful, it's working well with my mum, give it a try because it may make all the difference for your lovely mother.

Wishing you both good times ahead.

Graeme.

Hi Graeme,

Thank you for your valued advice and we will certainly give some of those a try, we have had feedback that the symptoms are very normal for radical chemoradiotherapy and we shouldn't worry unnecessarily, and future check ups will monitor accordingly, It was suggested they can be very normal symptoms as part of the recovery.

Its just so worrying because you naturally think the worst.

As I said we are focussed on curative intent so hopefully the contact you suggest will not be required.

Thanks and all my thoughts are with you and your Mum 

Morning Chris,

You are exactly right. These symptoms are very common, All the pro's we spoke to confirmed this. 

Side effects in my eyes are the biggest drawback, but they will diminish over time.

Don't worry about hospice support, as you say your mother is on her way to being cured, & I'm so happy for both of you.

My best wishes to you both,

Graeme.

Hi Chris,

Just a quickie.

Your mums pain radiating from front to back, I am guessing here but is it excruciating when it occurs ?

Well my mother has just been prescribed a patch  (thumb nail size) called Matrifen. She's on the lowest dose of 12 micrograms. They stick on the upper arm & release Fentanyl constantly over 72 hours. They are given when Oramorph or similar don't give relief. And you can add 5mg's of Oramorph as well  as the patch. They are much more potent but not dangerously so, & the pain will stay away. You just give it 24 hours to start working, & while you wait you can give your normal painkillers.

Mum had her 1st patch put on by me at 5.30pm yesterday. And it's already working, well within 24 hours.

It's just a thought for you, one that will work & quash your mums pain.

Best wishes as usual to you & your mum,

Regards,

Graeme.

Hi,

Thanks again for the advice.

No the pain is mild but noticeable and only occurs when swallowing certain things. It's kind of worrying her more than hurting her if you know what I mean but it seems the oncologist thinks this is expected and she is not too concerned at this stage as the Chemotherapy and radiotherapy combined will cause considerable inflammation in this area which kind of makes sense.

Regards

Chris

Hi Chris,

just wanted to know how your mum is doing, & how you are too?

My regards,

Graeme.

Hi, Sorry, not been on in a while. Mum finished her treatment 6 weeks ago now and has improved very much. She had her CT on Monday and we are waiting for the results, very nervous. Hope you and your family are coping well, thank you