Hi, my mum has been recently diagnosed with Lymphoplasmacytic Lymphoma, but consultant thinks it could also be plasma cell Myeloma. So he’s asked for an MYD88 test to be carried out, does anyone know how long this takes? We have been waiting weeks and until we know, treatment can’t start? Thank you for reading
Hi @Maz I am so glad that you have found us.
I remember be so fearful, in shock and anxious when I was first diagnosed.
So much to take in and a lot of it in medical terms and terminology.
I find there is a lot of waiting around for tests, treatments appointments etc.
I think waiting and not knowing are the worst feelings.
Perhaps your mum or you with her permission might contact the hospital to ask your question.
Does she have a CNS (Clinical Nurse Specialist) or key contact or perhaps the consultant?
Now is a good opportunity to get your mum to write down all the questions she and you would like answers to at your next appointment.
Really look after yourselves and keep posting as I would like to hear more about you.
Hi, thank you so much for your reply. Unfortunately the consultant is elusive and doesn’t answer messages left for him by his secretary and we don’t have a CNS. We are both left hanging in limbo so to speak. It’s awful.
Hi @Maz have you contacted the hospitals PALS (Patient Advice and Liaison Service) to see if they can assist?
Hi @Maz and welcome to the forum. The waiting is so difficult and having a medical team who are elusive on top of an already stressful situation just adds to the worry. @Erica gives good advice. I would definitely contact PALS to see if they can help you. I need, and have a good medical team around me and you should be able to have that to. Please let us know how you get on x
Welcome to the Forum and Thank you for posting your question.
Sorry to read about your Mum’s ‘possible’ diagnosis and also the wait you are having to find out exactly what her disorder is. Not knowing, and waiting to discuss treatment is so difficult. I hope you are both okay.
Usually genetic tests take between 2-4 weeks to be reported, however, with current staff shortages in the NHS, sometimes it is up to 6 weeks.
How is your Mum feeling? If she is symptomatic and feeling more unwell, please do get back in touch with the Haematology team or her GP to let them know.
Please do ask for a specialist nurse or key worker at the next appointment, and their contact details. I hope it’s not much longer you have to wait for her results.
Please do call our support line, if you or your Mum want any information or support at all: 0808 2080 888
Take care, Heidi.
Hi Maz, I have LPL (the abbreviation for lymphoplasmacytic lymphoma). 90% of people with LPL have the MYD88 gene (so their subtype of LPL is often referred to as Waldenstrom Macroglobulinemia - another real mouthful). I am in the 10% with LPL who is MYD88 negative (also known as MYD88 wild type). I am not aware if MYD88 gene status is relevant for a diagnosis of myeloma or not (I thought it only related to LPL but I could be wrong so definitely check with your Mum’s consultant on this). I am guessing your Mum had a bone marrow biopsy as part of her tests ?. I think it took about 3 weeks for my MYD88 status to be identified from the biopsy. I don’t think the MYD88 status makes a lot of difference in their decision for initial (“first line”) treatment of LPL but it can make a difference in the choice of subsequent treatment choices (eg the drug zanubrutinib works much better in MYD88 positive people than MYD88 negative). As LPL is a slow growing lymphoma, they will hold off treatment until it’s really necessary (they weigh up the risk of the cancer against the risk of treatment and it’s side effects), so there’s a chance your Mum may also initially be put on “watch and wait” monitoring . If her symptoms are bad or the LPL is affecting organs then they tend to start treatment. Whilst it’s a shock to know that your Mum may have lymphoma (so a type of blood cancer), as it’s slow growing it’s considered treatable but not curable so it’s likely your Mum will need treatment from time to time (hopefully many years apart) to knock it on its head
Hi@CaroleCW,I read with interest your explanation of LPL and the
MYD88 gene .I didnt realise the connection with WM so thank you for that information .
Hi,xsorry I’ve taken so long to reply. Mum has just been told her Mid MYD 88 test was negative, so it’s not a Lymphoma, but consultant then said in his letter to her this " “so therefore any diagnosis now is difficult to identify or determine”
I’m literally lost for words. So he says in one hand,yes Yiu have blood cancer, could be myeloma or lymphoma, now he’s saying in a nutshell, he doesn’t know.
Mum and I are so upset and confused by this. I called his secretary only to be told " you have a telephone call booked for next week, I suggest you ask him then!" I work as a receptionist in a busy GP practice, I’m also a qualified dispenser and have worked for a drug company, and in a psychiatric unit, so I’ve a medical background. I’m no expert, but really!? They don’t know? And to be told in a letter? Mum is 87 and bedridden due to small strokes she had early last year. She really doesn’t need to be treated like this. So sorry to rant but I’m so upset for her.
And whilst we wait , whatever is wrong with her isn’t being treated…
Hi @Maz. That must be so tough for you both. Not knowing his just the worst isn’t it. I can’t comment on the how’s and why’s they dont know but have copied in the @BloodCancerUK_Nurses as they may be able to explain more. I know the wait for the call will be really difficult. Make sure you have all your questions written down ready for your call next week. Please let us know how you get on X
Oh @Maz , @Nichola75 has brilliantly replied to you but I bet you and your mum have a good list of questions for your telephone consultation.
Perhaps be ‘pleasantly assertive’ and don’t let your call be ended until you and your mum are both satisfied.
A good rant is sometimes what is needed and that is what we are here for…
Be very kind to yourselves and please let us know how you get on.
Hope the phone call next week gives you some more answers. If you are still not comfortable with the outcome, do remember you can ask for a second opinion.
Thank you for taking time to update us all. I hope you are coping okay today?
I am so sorry to hear mums diagnosis has not yet been confirmed. I can appreciate how many unanswered questions this will leave you both with.
Unfortunately diagnosing a blood cancer can be at times be very complex and i do hope you are able to have a pathway forward for your dear mum after this weeks appointment.
May i ask Maz, do you have the support from your mums GP at all?
If you think it might help to talk things through do know that our helpline is here for you at any time - Blood cancer information and support by phone and email | Blood Cancer UK.
As others have suggested your opportunity to understand more and ask questions will be an important time for you and keeping a note of concerns and questions might help on the day.
Look after yourself, Lauran
Hi @LauranBloodCancerUK , thank you so much. I’m struggling to be honest. Mum doesn’t understand medical terminology and has a slight memory loss so sometimes forgets she’s got cancer. I understand it’s hard to diagnose but initially we were told Myeloma or Lymphoma, so now ones out the picture I assumed Myeloma would be the diagnosis but maybe I’m wrong. I’ve so many questions, I will write a list but I do know that the telephone call probably won’t be long enough for him to answer them all. Mum’s GP is supportive but only in as much as calling when she received the consultants original letter, not heard from her since. I’m getting counseling from Care for Carers as mum was in hospital for 3 months last year, discharged for a week, care package fell apart as she fell off the commode and carers pulled out. She then spent 9 weeks in a nursing home which destroyed any confidence she had left in getting about by herself. I can’t describe how awful it’s been plus to be hit with this now, I’m living on the edges wondering what we’ll be hit with next.
Everyone I speak to is so kind and says it will all be ok but the NHS is at breaking point and services are so stretched I wonder if she will ever get treated. Her bloods were done last month but GP doesn’t have them so I don’t know what her levels are and I find that frustrating. Anyway, I must get on and do the washing up lol
You have been through so much and I’m sure what you have described is just the highlights. It sounds like it’s been incredibly frustrating & upsetting time and somewhat prolonged with difficult communication, so it is no wonder you are feeling on the edge.
I appreciate when you are a carer and have so many worries for a loved one that your own self care can inevitably slip, so i do hope you are able to have support from others during this time.
Again do not hesitate to reach out to our helpline Maz if you would like to talk anything through.
Best Wishes, Lauran
Please do know that alongside the carers support you are already receiving - we are very much here for you also- 0808 2080 888.
Hope I don’t confuse but heres my experiences.
I had/have B-cell Paraprotein in my blood. Haemotologist called it B-cell MGUS, my GP called it Myloma. I questioned why my Haemotologist was non specific in diagnosis other than MGUS, in other words a general collective condition. My GP was equally but differently generalising by B-cell malignancy equals plasma equals Myloma.
10 years of watch and wait before it was finally specified as Waldenstroms Macroglobulinemia (WM) and treatment (RIbrutinib/Ibrutinib)
The differences between bone marrow based BC’s can range between Leukaemias to Lymphomas. It’s all those enzymes and messangers giving wrong messages and duff cells.
Until they’re specific in diagnosis I understand why they generalise. There are 60+ types of Non Hodgkin’s alone to decipher.
Hope you get your answers asap and if the techy doctor speak confuses you ask the nurses on the forum.
Hi thank you . We have the telephone call tomorrow. I will ask questions, these being…
1.What is the diagnosis now, if it’s not Lymphoma ? Will mum need more tests?
2 . How will it be treated, or if not how long do you " watch and wait" for?
3. What are her blood test results?:Do they show a decline or improvements since November bloods? How advanced is the cancer?
4. If treatment is an option, how do you propose it’s managed for someone who is bedridden and may suffer possible side effects, such as diarrhoea etc?
5. If mum refused treatment ( which she is already saying she will ) what is the prognosis and what problems/ issues might we face along the way?
I know he probably can’t answer some of them but is there anything else I should be asking? Mum has no CNS nurse, so I will be asking why not? Maybe it’s because she’s not fully diagnosed?
Amy guidance would be much appreciated as I’m dreading tomorrow x
Brilliant questions @Maz and don’t forget to be pleasantly assertive and persistent until you have suitable responses.
Fingers and toes crossed for you both and imagine you have your forum family with you for support.
Please do let us know how you get on.
Sounds like you have some really good questions. The support line will always help if you want to talk through your question. Please let us know how you get on x
Thank you so much, I’ll make sure I’m assertive and I want the conversation to be a positive one. Mum isn’t feeling great at the moment, she’s come down with a nasty cold and it’s her birthday on Saturday, she’ll be 87 bless her,so I really hope we get answers. Thank you again all of you xx