This is my first post.
My mam has had Hodgkin’s lymphoma and non Hodgkin’s 3 times the last time she underwent a stem cell transplant (October 21).
She has her 6 month scan and has two hot spots in her lymph nodes what was on the 3 month scan however they it was infection but unfortunately they haven’t decreased in size or disappear.
They are discussing her case in a MDT tomorrow and possibly of doing a biopsy on the hot spots.
Does anyone know if they will give her anymore treatment or if they will class this as terminal?
Thank you and sorry for all the questions! Xx
Hi @Rebecca and welcome to the forum. It must be a really worrying time for your mum and your family and I can imagine you have so many questions about what might happen next.
When do you get feedback from the MDT meeting. I hope this will give you the opportunity to ask all of your questions and that they can talk you through the next steps.
It may be worth giving the Blood Cancer Uk helpline a call as they will be able to offer more information. Blood cancer information and support by phone and email | Blood Cancer UK
I have also copied in @GemmaBloodCancerUK and @LauranBloodCancerUK in to your post.
How are you and your mum coping at the moment?
Please do give us an update when you feel up to it.
Sending lots of special wishes X
Hi @Nichola75 thank you so much for your reply. I’m besides myself this time around with her already having a stem cell transplant and a bone marrow in the past.
They’re calling her after the MDT tomorrow so it should be tomorrow afternoon or Monday at the latest that they call.
Il be at work unfortunately so unable to ask any questions, hopefully my mam asks them.
Thank you so much for that info!
I’m trying to remain as calm as possible in front of her/at home but I’m stressed to bits. My mam seems ok she seems more stressed today but has been fine since Monday on finding out there’s still hot spots. Xxx
Hi @Rebecca I am so glad that you have found us and I can tell by your post how fearful and anxious you naturally are, our mums are very special people and you are powerless to make her better.
@Nichola75 has given you a brilliant response which I won’t repeat.
All you can do is await the MDT tomorrow.
Your mum is very lucky to have you.
Please let us know how you and your mum get on.
The main thing is that you both look after yourselves
Make sure somebody is looking after you to. It’s hard to be strong all the time. As @Erica said, your mum is very lucky to have you. Take care X
Really sorry to hear your news @Rebecca . I know how worrying it is living through an illness with someone close and the effect it has on you. It sounds like you are doing all you can to support your mom and you must all be very anxious waiting for the results. I hope that you are able to find some comfort.
How are you doing @Rebecca?
They’ve been all puzzled at the mdt as to feel you can’t feel them as they’re so small however have showed up as hot spots, they’re doing an ultrasound and biopsy within 2 weeks (sooner if any cancellations become available). They’ve asked her if she’s having any signs but with having no immune system she’s unsure how she’s meant to feel.
Thank you for all your help. I honestly wish I’d knew about the group with the first one back in 2014 ish! Xxx
I’m glad they are on top of things and you don’t have to wait to long please keep us updated when you are able to. Always here if you need to share/offload, as well as the support line of you need it. Sending lots of love X
So sorry to hear about your situation and I echo what others have said.
Regarding being unable to go to the appointment to ask the questions…
Would it be worth writing them all down and giving it to your mum so the doctor/nurse/specialist can answer them on paper for you to read or very least, ring you and leave you a voicemail with them going through all you’ve written down for them?
Take care and hope your mum is coping
Hello there @Rebecca,
I am so sorry to hear that you and your Mum are going through all this worry. I am really glad you have found this Forum as it is so supportive. May I ask how your Mum is feeling? Does she have any symtoms that are concerning to her? At this point, the biopsy results are key but I appreciate that it must feel like such a long wait for you and your family.
In answer to your orginal question, there may well be further treatment available if disease is present so I would discuss this with your Mum’s Haematology team. Clinical trials are also to be considered, you can speak to our incredible Nurse Led team if needed: Clinical trials | Blood Cancer UK
Do keep in touch and take care of you and your Mum.
Oh @Rebecca isn’t the waiting and unknown absolutely horrible, but in NHS terms they seem to be on the case,
I have also found writing down all my questions, symptoms, medications, other conditions etc very useful as my mind goes blank as soon as I walk int a medical building.
We are here for you both so please do use us and the Blood Cancer UK support line.
Look after yourselves and please keep posting
Thank you so much @Nichola75! Il keep yous updated on appointments/the outcomes! Xxx
@Rammie18 I’ve never actually thought about doing that! Il definitely do that next time. Often her partner goes to appointments so I could ask him to ask the questions if not on my behalf xx
@GemmaBloodCancerUK thank you so much for your reply.
My mam feels fine she’s got a cough that happens throughout the day but that’s been on going since having the cancer and treatment the first time I think that was early 2014/2013 and very dry eyes however she’s got prescription drops for them that she gets monthly. She’s had that and itchy eyes since after the bone marrow and stem cell transplant last year when she got gvh.
Hopefully the appointments won’t be too long and we can know what’s happening xxx
Thank you so much @Erica im definitely going to do this for the next appointment! Il keep everyone updated! Xxx
Thanks for letting me know how you Mum Is @Rebecca. If you do need to talk at any time do get in touch and take care to you and your Mum.
She received her letter from her last appointment/over view what says
It was a pleasure to see Claire in the transplant clinic today. I am pleased to say she remains very well in herself. She had no evidence of graft-versus-host disease today. Her PET
scan continues to show uptake in her neck. We will review this at our MDT this week, and I
will contact her with the outcome. I have made her an appointment in six weeks time.
Still awaiting the ultrasound and biopsy appointment however xxx
Hi @Rebecca thanks for letting us know @Rebecca sounds positive to me, although you are still awaiting the ultrasound and biopsy appointment.
Look after yourselves and please keep posting
Hi everyone, just a little update the letter came through today for the overall sound and the biopsy it’s on the 3rd of October xx