Good morning
my mum was diagnosed with Follicular lymphoma and it as come back 3 times in 4years. She finished this years treatment after catching covid and having sepsis they scanned her in June. This showed a small thing on her hip but consultant said it was too small to say what it was or to even do a biopsy on but no other lymphoma was showing she’s hasn’t felt any better since finishing her treatment and went back recently for more scans this showed large nodes 1 under her breast 1 near liver and 1 on the hip bone they believe this maybe a different type of lymphoma now due to higher rise in something not sure what they said but they said they needed to do a biopsy to find out. She then went to have the biopsy but scan showed it was too dangerous the nodes were too close to the liver and the one on the leg was to close to an artery and all other nodes were to small they have now put her on 3 different chemo tablets.
I am a bit worried why if they think this is a different more stronger lymphoma why this is only being treated with chemo tablets and why if these are just as successful they didn’t do this for all the other times instead of having to keep going up there.
I am also worried if they are not sure what they are treating and they are wrong in 2 months when she goes back the cancer could of spread everywhere.
I have so many questions but no answers any information would be appreciated
Hi @Jaynicki,
A very warm welcome to the forum. Thank you so much for taking the time to explain all that is happening with your dear mum. It sounds like she has been through an awful lot and it is no wonder that you have many questions. I do hope you are doing okay?
May I ask, have you been able to get in touch with your mum’s haematology team or indeed clinical nurse specialist and direct any of your concerns to them at all?
If not, it might be a good idea to reach out and request an additional appointment for you to be able to fully understand the decisions behind the current treatment choice and also have your questions answered.
I appreciate this must be really difficult and do know that should you wish to talk anything through, please do know that our helpline is always here for you- Blood cancer information and support by phone and email | Blood Cancer UK.
Take Care, Lauran
Hi @Jaynicki a great big welcome to our forum and I can hear your natural anxiety.
@LauranBloodCancerUK has given you a brilliant response.
All I would add is to look after yourselves and the quicker you get answers the better as the not knowing is horrible.
I always have to write down all my questions as I just go blank or forget one or more.
Also remember that medical people often speak a technical language so please do ask for clarification.
Please take lots of care of yourself, worry and anxiety is exhausting.
Please keep posting as you are now part of our forum family.
Hi
Ye it’s been tough mum is having more bad days than good. Her mouth is full of ulcers so any advice reference anything people have used that might help would be great
Thanks for asking
Regards
Oh @Jaynicki I am sorry to hear that it has been so tough for you both.
I hope that others can help with medications, and I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses, but perhaps your mum’s medical team need to know about the severity of the ulcers and the impact on her life and the same with any other symptoms she might have.
Some people find ice cubes help.
As for foods I have found that tinned custard, hot or cold is good for me, I am also an ice cream girl. Puréed fruit and veg are nutritious and food supplements (some are nicer than others)
I talk about foods because they are our fuel to help us emotionally, medically, energy wise, physically and practically, and keep the body functioning. I think of it as putting fuel in or charging a car.
Look after and be very kind to yourselves, and that also includes you @Jaynicki
Hi @Jaynicki,
Thank you for updating us all. I am so sorry to hear that your mum is struggling with ulcers. I hope you too are doing okay as being a carer for someone going through cancer is far from straight forward or easy. So please do know if you ever wish to talk things through, our helpline is always here- 0880 2080 888.
I am assuming the influx of ulcers is likely a side effect of her new chemo regime & run down immune system.
May i ask has your mum been able to alert her CNS to her ulcers? If not, this is something we would advise, as often they can prescribe some treatments to help sooth the affected areas (mouthwashes, ointments & if needed pain relief).
We appreciate just how painful ulcers can be. In case it is helpful in any way i have linked here to a few pages which offer some helpful practical tips such as foods to avoid-
Sore mouth or gut (mucositis) | Blood Cancer UK
Tips For Mucositis - Cancer Treatment Tips – Comfort Crate
I hope this is somewhat helpful and do keep in touch,
Take Care, Lauran
When I had ulcers @Jaynicki I ate nothing but ice cream and jelly until things improved as I couldn’t swallow. Not ideal but it did the trick until I could manage more solid food.