Hi
I have not long joined and feel strange being on here. I have been taking part in the galleri trial for the past 2 years and my last blood sample was in June. I received a call a few weeks back to say they had found 2 signals of cancer DNA and would need to get them investigated. In the past week I have had bloods taken and a CT scan so waiting for results of them. I was wandering if these tests come back ok should I be asking for any other tests? Has anyone else had a cancer signal from this trial?
Hi @Mike_69 a great big welcome and I would say although it seems strange to be on here you are in the right place.
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses.
I do not know if there is anyone else on our forum on this trial, I hope there are and can share their experiences.
I realise the feelings of waiting and not knowing are absolutely horrible…
Please do let us know how you get on and really do look after yourself.
Hello @Mike_69
Welcome and Thank you for posting on the Forum.
I have to be honest and say I wasn’t aware of the Galleri Trial, I’ve looked it up and it seems like a great research project, that hopefully will give us all some good data for future considerations and policy changes. Thank you for taking part, it’s so important that people are willing to be part of research to get the right information to progress our healthcare directions.
Do you mind me asking if the DNA changes you have had are related to blood cancer specifically?
It’s good to know that your scan and more blood tests have been prompted by the blood test from the trial. It seems the trial researchers are quick at following up any changes they find.
I am sure that when your scan and blood test results come back, if there is an indication that you need even more tests or to be seen by a cancer specialist, this will be organised. They won’t be expecting you to enquire or ask for specific tests.
In case it is helpful, and you do want to discuss next steps, the trial does have it’s own helpline: NHS-Galleri Trial | Contact You could call or email them if you think it would be good to discuss your individual circumstance.
Please keep us posted on how you are, and how the trial is going.
Take care, Heidi.
Good evening
Thank you for your replies @Erica@Heidi_BloodCancerUK . To be honest my head is in a spin and I cannot think of anything else since receiving the phone call then within 2 weeks I’m seeing a haematologist and having bloods taken and a CT scan. @Heidi_BloodCancerUK they picked up a quite high signal in the lymphoid lineage and a weaker signal in the prostate. The haematologist did reassure me this does not mean I have cancer and he will do all nessaserry tests including for prostate. I’m just scared of the unknown at the moment but once I know either way I will be able to deal with it. Thanks again
Oh @Mike_69 please do let us know how you get on.
Yes, waiting and not knowing are horrible feelings, I also need to know what I am dealing with.
Be very kind to yourself
It is completely understandable your head is spinning, it is not something you were expecting. As Erica has said, the waiting for results is one of the hardest parts.
You are in a good position of finding out a potential diagnosis at a very, very early stage, I guess that is the whole point of the trial.
Please try to remain positive, don’t let your imagination run away with itself (this happens so easily), and certainly do not start googling anything. Be guided by the Haematologist, but do list your questions and take them with you, ask them where you can find more information if you feel the need to know more.
Even though you don’t have a diagnosis, you can still call our support line if you wish to talk things through: 0808 2080 888, it’s free and confidential.
Take care, Heidi.
Hello @Mike_69
I can see that you have had a lot of great support on here. I did speak to our Clinical Trials Team and they said that the Galleri team are obliged to do further testing as a consequence of any signals identified and potentially ongoing monitoring if indicated. It is understandable that you ask around others experience and hopefully you will have some reassurance soon.
As @Heidi_BloodCancerUK mentioned do contact the Galleri Trials Team to let them know how you are feeling: NHS-Galleri Trial | Contact
Take good care
Gemma
Just an update. After receiving my CT scan results i had a biopsy taken on the 14th of August and should have received my results today. My consultant informed me that my results have not returned yet but he can provisionally confirm I have some sort of lymphoma and has arranged for a PET scan and another appointment in 10 days.
Oh @Mike_69 more anxiety, waiting and not knowing, please do let us know how you get on in 10 days time.
Be very kind to yourself and look after yourself
Hi @Erica@Heidi_BloodCancerUK@GemmaBloodCancerUK
Thank you for all your replies, Today I had my appointment with my consultant who confirmed I have Follicular lymphoma. It feels strange knowing I have a cancer which is not curable, and doesn’t need treatment yet and I feel well within myself.
My consultant did say this would not have been picked up for a long time if it wasn’t for the galleri trial, so thank you NHS for the invitation to participate. I was told I will have a check up every 6 months and in the nicest possible way to go and get on with my life.
I had to laugh, as my wife and I left the hospital and got a taxi the driver put the radio on and the first song was I will survive .
I would like to ask @Erica with being on watch and wait for so long, is it always on your mind or do you just learn to live with it (if that sounds right).
Hi @Mike_69 to answer your question my Chronic lymphocytic leukaemia (CLL) gave me the opportunity to reflect on my life and decide what I wanted to do and with whom, I also learnt to say ‘No’. The best things in life are free, family and friends are priceless.
I have learnt to accept my Chronic lymphocytic leukaemia (CLL) and my symptoms, however I still get anxious before and during all tests and appointments.
My Chronic lymphocytic leukaemia (CLL) is not on my mind all the time, but this has taken time.
However I think since diagnosis my thoughts and emotions have been on high alert, but that’s OK.
Life is good, and I have gratitude every day and I feel a very lucky girl.
.