Hi everyone, I have joined this group for help and advice for my mother who was recently diagnosed with stage 4 non Hodgkin b cell, Sorry if not got that quite right.
She has started chemo about 8 days ago and seems to be responding well to it. Only real side effect at moment is a very sore mouth, she is taking high dose steroid aswell at the moment which I guess can also cause ulcers etc.she has a mouth wash and spray she was sent home with but just wondering if anyone has any good tips for easing these. I am going to get her to join herself as these groups are excellent and I myself used it 10 years ago when dealing with my own battle. Thanks in advance for any help.
Hi Chrish0 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your mum.
I am Mike and I help out around our various Lymphoma groups.
There are over 60 types and sub-types of Lymphoma so B-Cell could mean a few things but most likely she could have DLBCL (Diffuse Large B-Cell Lymphoma) as this is the most common type.
For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
It's important to note that Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies....
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation.
3) How long your treatment needs to be.
Sorry to hear about her mouth issues..... unfortunately it often happens. The main things she has to do is....
Use the mouthwash and spray religiously every day all the way through her months of treatment..... it's more about being preventative rather than reactive. I set an alarm on my phone for the recommended times between using the mouth care and this reminded me to do it - every day.
If she feels that her mouth care is not working call this in as there are different types and it can a hot or miss as to which one works the best.
The thing I found worked well for me (along with the mouth care products) was fresh pineapple that is bitzed in a food processor then put onto ice cube trays, frozen and I regularly (between mouth care products) sucked on these.....worth a try.
Sh also MUST be aiming to be drink 2 liters of water a day - it's hard work!!!..... but this will help keep her body hydrated, this in turn helps her mouth but also flushes the chemo toxins from her body and protects her kidneys.
You may find this link helpful - Top tips for family, friends and carers
She is more than welcome to join the Community.......
But you may also want to check out Lymphoma Action (This is where all the links I have posted come from)......... Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms both for patients and caregivers..... I highly recommend these (online and in person) groups as there is nothing better than 'talking' with other who have or are walking the same journey.
They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey and can chat on the phone.
Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support.
Always around to help out.
