Hi I am just wondering if anyone has small lymphocytic lymphoma (Small lymphocytic lymphoma (SLL)) that has then transformed into large diffuse B cell lymphoma (Richters). I have just recently been diagnosed and I am petrified.
Has anyone been on the RCHOP STELLAR trial for this or is anyone aware of how the trial is progressing? Thank you.
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Hi @MrsG263
So sorry to read about this and how petrified you’re feeling about it.
I just wanted to share the details of our clinical trials support team in case you would also like a conversation with one of our clinical trials nurses about the trial you have mentioned: Clinical Trials Support Service | Blood Cancer UK
We also have information here about your diagnosis in case you would find this useful to read through: Diffuse large B-cell lymphoma (DLBCL) and other high grade B-cell non-Hodgkin lymphomas | Blood Cancer UK
I really hope someone with a similar experience is also able to respond to you - I have tagged your post to make it easier to find.
Warm wishes,
Ali
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Hi @MrsG263 and a great big welcome to our forum.
@Ali_BloodCancerUK has given you a far better response than I could have given.
I do not wish to repeat her words, but I am so glad that you have found us.
I reckon it is natural to feel petrified, you have also entered this parallel universe that speaks a different language.
I was diagnosed 21 yrs ago with Chronic lymphocytic leukaemia (CLL) and I have never learnt it. I have to ask my medical team to speak in plain terms.
Please do keep posting as I really look forward to hearing more about you. Take lots of special care of yourself and be very kind to yourself
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Hello Mrs G263
My name is Lynne, I am one of the Clinical Trial Support Nurses. I am probably repeating others and have to agree, being petrified is a pretty reasonable reaction but you are reaching out for help and support and that is an impressive way forward.
I hope you find someone with first-hand experience of the trial through the forum, if not, have you been introduced to a trials nurse or nurse specialist in your treating team to talk to about the trial and how you are feeling? If not, could you ask if either is available? These nurses might be able to put you in contact with someone who has already started the STELLAR trial.
Apologies if you know this information; RCHOP is the gold standard regime for the treatment of diffuse large B cell lymphoma (Diffuse large B-cell lymphoma (DLBCL))/Richter’s that you may well be offered on or off trial. In the STELLAR trial information, the additional drug offered is acalabrutinib (a targeted drug), it has been used in other trials and standard treatment so a lot is known about the effect it can have. The concept of the trial offering RCHOP and acalabrutinib is based on evidence that has been gathered previously to suggest there may be a benefit in combining them.
If you have any doubts, worries or questions your treating team are there for you to discuss them. However, please feel you can contact our clinical trials support service (CTSS) nurses (email: trials@bloodcancer.org.uk) one of them can arrange a call to talk through more about trials or our Support Service nurses for additional help Telephone: 0808 2080 888 Email:support@bloodcancer.org.uk.
I hope you receive answers and support. Take care.
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