Hi,
My brother has ABL, and has undergone phase 1 of induction. But he did not achieve remission as hoped. The team is going come back with what other options are available. What other treatment would they suggest?
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Hi @Drake
I’m sorry to hear that your brother hasn’t had the response hoped for following his phase 1 of induction.
I have a different condition and had several times when the chemotherapy didn’t provide the positive results hoped for.
Your clinical team really are the best to share options with you as each individual with blood cancer is different.
If you wanted to speak to someone confidentially I’d encourage you to reach out to the @BloodCancerUK-SupportTeam
You can call them for free. Details below
0808 2080 888 (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
- Monday, Wednesday, Thursday, Friday: 10am – 4pm
- Tuesday: 10am – 7pm
- Saturday: 10am – 1pm
- Sunday: Closed
- Bank holidays: 10am – 1pm
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
Hope that helps and do keep us informed as to how things progress and for support more generally when you need it.
Take care and best wishes to your brother.
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Thank you Duncan. He completed phase 1 2 weeks ago and has not had any treatment since. So im feeling a bit anxious as we’ve not been advised of a plan or next steps.
The MDT are meeting this afternoon or tomorrow so hoping to know more soon
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Hi @Drake
I appreciate 1-2 weeks since treatment might seem like an eternity for you and your brother and of course wider family.
Taking it to the MDT is what they usually do so that they can determine best next steps at this point.
Hopefully get some news shortly 
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Hello @Drake
Thank you for your post.
We are so sorry to hear about your brother’s diagnosis and that he has not yet achieved remission.
Please do know that you are not alone and should you wish to talk through anything you can call one of our support services team on 0808 2080 888 or email us at support@bloodcancer.org.uk.
To clarify, can we ask if you are referring to the BCR::ABL1 gene in Chronic myeloid leukaemia ('CML'). If so, we have further information on Chronic myeloid leukaemia ('CML') and it’s treatments on our pages - Chronic myeloid leukaemia (CML) | Blood Cancer UK that may be helpful to read over. As treatment is determined on an individual basis, it’s hard to comment on which treatment may be recommended by the team, however under the treatment section of our Chronic myeloid leukaemia ('CML') page it does include information about first, second & third line treatments as well as other types the team may discuss. It may be useful to write down any questions you as a family have for the team and they will be able to go through this with you.
Please do keep us updated & take care,
Warm wishes,
Emma (support services nurse)
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Hi Emma, he has acute lyphoblastic lymphoma, TCell, Philladelphia negative. Its being treated the same as aute lyphoblastic leukemia. The ALL14 treatment plan but as the 1st phase has not gone as hoped they are looking at alternatives.
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Hi @Drake
Thank you for getting back to me.
Apologies for the confusion.
It will still be determined by the treating team/ consultant. There are guidelines for this protocol, again this could vary for certain individuals and also be altered due to a number of factors such as age, past medical history, general fitness and diagnostic tests. Often if the first phase has not achieved remission, the team may move to ‘Phase two’ which may involve the following drugs: Cyclophosphamide, Cytarabine, Methotrexate and Mercaptopurine.
Take care,
Emma (support services nurse)
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Thanks Emma. I have found it all confusing too as although its lymphoma, the treatment is the same as for leukemia. There’s more information on the ALL leukemia then on the lymphoma type.
Hoping for an update tomorrow on next steps
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Hello @Drake
Thank you for your reply.
Your brother’s haematology team will be able to offer the best guidance going forwards. Is it okay to ask how old your brother is to see if we can provide any further resources or support around this?
In case it is helpful our colleagues at Macmillan have some information on Lymphoblastic lymphoma Lymphoblastic lymphoma (LL) | Macmillan Cancer Support.
Lymphoma action also explain that this is very similar to acute lymphoblastic leukaemia (ALL), and is treated in the same way. We also have further information about ALL that may applicable depending on what the team discuss is most suitable for your brother on our page - Acute lymphoblastic leukaemia (ALL) | Blood Cancer UK
Keep us updated and warm wishes,
Emma (Support services nurse)
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Hi Emma,
Thank you for the information, very much appreciated. My brother is 56 years old so again I believe this is quite rare for someone of his age to have this?
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Hello @Drake
Yes, both acute lymphoblastic leukaemia (ALL) and acute lymphoblastic lymphoma are rare diagnoses in adults and are seen much more often in children and teenagers. However, they can occur at any age, including in people in their 50s and older.
We can imagine that receiving a rare diagnosis at 56 may make your brother’s situation feel particularly unexpected and worrying. While it is uncommon, the haematology team will have specialist knowledge alongside his individual results and will be best placed to advise on the most appropriate treatment options for him.
In case it is helpful, I just wanted to make you aware of our Clinical Trials Support Service if at any stage your brother would like to explore whether there may be any clinical trials relevant to his situation. They aim to identify suitable trials and provide information around this that he could then discuss with his treating team - Clinical Trials Support Service | Blood Cancer UK
Please keep us updated and let us know if we can support further.
Warmest wishes,
Emma (support services nurse)
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I have just been on a call with my brothers consultant. They have decided to start Nelarabine on Monday. This is with the hope that he can then have a stem cell transplant if the Nelarabine works. Another option they have looked into is a potential clinical trial at UCLH called Fract ALL. Im glad there is some progress but so anxious about whether this is going to work.
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Hello @Drake
Thank you for updating us. It sounds positive that your brother’s team have been able to identify some next steps and that there is now a plan to start Nelarabine, with the hope of moving on to a stem cell transplant.
It is understandable for this to cause feelings of anxiousness and uncertainty, please do reach out to us or our clinical trials team if we can support further. Perhaps loop in with your brother’s haematology team/ clinical nurse specialist about how you and your brother are feeling so that they can support you as best they can. It’s encouraging that his team are also exploring other options, including the Fract ALL trial at UCLH.
Keep us updated.
Take care & warm wishes,
Emma (support services nurse)
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It definitely will be difficult and a worry right now @Drake
What I found helped me is just focusing on the present and what I could influence as well as letting go of what I couldn’t control.
It sounds like your clinical team are being proactive.
Take care
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Hi Duncan, sometimes it feels as though nothing is progressing and the suddenly its all happening at once!
Yes very good advice. Take it day by day.
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Hello @Drake, I’m happy to see you’ve received some great advice in this thread. I just wanted to check in and see how you were doing, and ask how your brother is?
Take care,
Ceri - Blood Cancer UK Support Services
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Hi Ceri,
Thank you for checking in. Its been a busy couple of weeks. My brother has started the treatment and will now have his final session tomorrow. After that its more waiting to see if the new treatment has worked. Thats the hardest bit I find…the waiting and the unknown.
My brother has coped so well. Im very proud of him.
We dont know whats next. He may need another round of this chemo or he may then move to having a stem cell transplant.
He is also still waiting on an update from UCLH on the clinical trial, so that could also be an option.
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