Hi, just wondered if anyone on the forum has joined the trial. Full title Oxford Precancerous Lymphoproliferative Disorders:Analysis and Interception Study.
I have been looking at this and whilst I dont yet meet the entry criteria they seem quite keen for me to join. I was going to ask the opinion of my haematologist first before signing up though.
Helen
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Hi @helenfwallace well, what a name for the study.
I will copy your post to the Blood Cancer UK nurse advisors for you @LauranBloodCancerUK @GemmaBloodCancerUK @Heidi_BloodCancerUK in case they can hep you but as you say I think your haematologist is your first opinion as they knows all about your special unique medical history.
How are you feeling at the thought of being part of the study?
Look after yourself
Please do tell us what they say.
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Hi Erica,
As a teenager I was very keen on the biological sciences and wanted to find the cure for cancer. I studied Biochemistry at University, but learnt that laboratory work wasn’t for me. This offers the opportunity to help find the causes of some blood cancers and why mgus progresses in some individuals but not in others. One important issue for me is that participation in any study doesnt interfer with my current watch and wait monitoring and any future treatment or tests that I might need in the future. The downsides seem to be travel to Oxford or other study location and possible duplication of some tests.
Best wishes
Helen Wallace
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Hi @helenfwallace thanks for your post, very interesting, although less qualified than you (you can learn on the job era) I worked in all laboratory departments from research through to customer complaints in the cosmetics and fine chemicals industries in the first half of my career (20 yrs).
It sounds as if you have thought through the pros and cons really well and I will be interested in hearing how this evolves.
Please use our forum or if you would like to talk to someone the Blood Cancer UK support line is there for you.
Take care and look after yourself
Hi @helenfwallace,
Thank you for sharing this. I hope you are keeping well?
It is certainly a trial we are familiar with and I do believe we have had some interest from supporters previously.
I have linked here to a previous thread where we advertised this same trial last year and it has the contact details of the study team at Oxford, just in case it is helpful to you in anyway- [Newly diagnosed with MGUS - Recent diagnosis - Blood Cancer UK Forum -Newly diagnosed with MGUS - #56 by Alice_BloodCancerUK)
It is also a great idea to keep asking questions of your haematology team and indeed the trials team at Oxford in order for you to be fully happy on entering something like this.
Alternatively, if you think we can help in any way, please do contact our support service team via email or telephone at any point- Blood cancer information and support by phone and email | Blood Cancer UK
Take Care, Lauran
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I joined the OxPLoreD trial today at Oxford
Helen
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Good on you @helenfwallace ,it sounds z very interesting study
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Thanks Bannanacake. Was really surprised how exhausted I was afterwards. I chickened out of doing the bone marrow test, but did the blood, urine, dna tests and ct scan. At one point I ran out of saliva and so got a packet of chocolate biccies out of my bag. I must have looked very wierd walking around spitting into a tube and with a packet of biscuits infront of my face!
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Hi @helenfwallace who cares what we look like if it does the trick.
Yes, I find all medical tests and appointments are emotionally, physically and practically exhausting.
Have you got another appointment booked for your bone marrow test?
Look after yourself
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Hi Erica,
The bone marrow test was optional for the study and it isnt something that my haematologists are not looking to do at the moment. Obviously if things change and there is a need to have it done then I shall have it done.
Helen
Helen
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