Hi everyone, I was diagnosed in December with stage 4 follicular lymphoma, it appeared in my kneck and has spread to 3 areas in my spine, I started chemo on Monday and all has gone well with little side effects or at least what I am experiencing is manageable however today I have woken with a really sore mouth, my tongue, sides of my cheeks and the roof of my mouth really hurt, is this normal? Has anyone else experienced this? Is this related to the chemo? Apologies for all the questions. Any advice would be greatly appreciated
Hi Sunshine1010 and warm welcome to this cornet of the Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis.
I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed back in 1999 with a different type of Low Grade, Incurable Non Hodgkin’s Lymphoma Stage 4a so know this journey rather well.
Good to hear things are going well but mouth problems during chemo is indeed normal, the chemo can affect the weak areas of the body and one area is the mouth.
Mouth Problems can be a regular problem but good regular mouth care/hygiene is important. Difflam Oral Rinse worked for me, I set an alarm on my phone for every 2 hours and then set an alarm to make sure I was using it long enough in my mouth. Do also talk with your team as they can proscribed other products.
Also important to use a soft (baby) toothbrush so you don't irritate your gums and finally you do need to be drinking a good 2-3 litres of water every day to keep your body hydrated....... your mouth is very open to irritation and infection so hydration will help.
As for the 'sucking on an old penny taste'...... it's not great. Eating fresh pineapple helped me, others say freezing small chunks of pineapple and sucking on them helped and I always had a pack of boiled sweets like Werther's Werther's at hand. Strong flavoured foods help - some share by having curry....... I could not face them.
Happy to chat more ((hugs))
Hi again Sunshine1010, the blood cancer journey can be such a mystery until you get to understand your condition better and be able to distinguish what is going on in your body and filter out what is cancer/treatment related and what is just normal for this time of the year.
We could line up 10 people with the same condition and the same treatment and get 10 different stories.
What treatment are you having?
Don't be looking for Side Effects but there are lots of ways to overcome these if and when they come along.
Follicular Lymphoma (FL) is the most come of the Low Grade NHLs.
Like my rare type of Low Grade NHL you need to see your FL as a life long illness but the difference between other life long illness and FL is that it is very treatable and people live long and happy lives will little or no treatment or long periods between treatments.
The BOLD links above are taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.
Always around to help you navigate this journey ((hugs))
