Newly diagnosed ALL

Hi everyone , i hope this is the right section to post this. I am posting on behalf of my brother in law who has been diagnosed with T- cell ALL about a month ago. It has now transitioned to refracfory ALL having failed to respond to two different chemo regimes and now trying a new salvage chemo regime flag IDA. My sister is panicking and is holding onto the last ray of hope that is the flag IDA although we have been told it has only a 10% chance of working to get into remission. I have been trying to do as much research as i can to see if there are any treatment options available. The only antibody therapy i found was CAR t cell therapy but that is only for b cell ALL. I have asked the clinical team in charge of my brother in law if there are no options for clinical trials but they said there are none available, is this really true. I really need some help and advice i feel like im running into brick walls every direction i turn , any help or advice here will be massively appreciated

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Hi @Wh1tel1ght and welcome to the forum. It’s definitely the right place to post and I’m glad you did.
Gosh - that’s a lot to take on board and so much to think about. I can see how hard you are trying to get somewhere and it must be difficult not getting the answers you need. I would imagine your brother in laws medical team are looking at all options.
I can’t offer advice on trials or anything medical but I think it would be really useful to give the support line a call. How to contact Blood Cancer UK | Blood Cancer UK
They will be able to advise on what to ask or
point you in the direction of other useful information. I’ve also copied in our lovely Blood Cancer nurse advisors;
@GemmaBloodCancerUK and @LauranBloodCancerUK.
Your family are very lucky to have you by their side but please take care of yourself. I know at times it was really overwhelming for the people around me and we are here to support you as well X

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Hi @Wh1tel1ght

Welcome to the forum and thank you for posting…

So sorry to hear of your situation, it sounds very similar to when my sister had a different type of cancer and was stuck in hospital and me and my family were actively trying to do anything we could to help and assist her med team with something they didn’t know or may not have looked in it. i know nothing can compare to how your brother in law and sister are feeling but that sense of resolution being taken out of your control and power is not a nice feeling.

I have a different type of blood cancer but I know there are many people on here whom I’m sure will be replying to your post with more insight and guidance to your request. I know there is some great information about trials and how to access them on the buck website as well as an ongoing post on the forum about trials and ALL

From what I gather about trials, it’s very much a post code lottery and luck of time when trials begin and whether they are wanting specific patients, but I really hope your brother in law, sister and family find yourself in a more positive position and soon. But never give up hope and keep trying. I know at times it’s the only you can do to help and it becomes a bit of an obsession and a race against time, especially when you start thinking or enquiring about what’s available abroad.

Thoughts are with you, and please do not hesitate to contact the support line who maybe a quicker source for you to get the support and information you need.

Be kind to yourself

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Thank you @Nichola75 and @Rammie18 i will start by giving that number a call for some guidance thank you for your supportive and encouraging message

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Dear @Wh1tel1ght,
Thank you for posting and I am so very sorry to hear that your Brother-in-law is going through such a challenging time with his diagnosis of T-cell ALL. We understand that exploring all potential treatments is so important. Can I suggest that you talk to our Clinical Trials Team which is a Nurse Led expert service that will allow you to discuss your Brother-in-laws clinical situation and any potential trials: Clinical trials | Blood Cancer UK, the referral is on the webpages I have attached.
May I ask whether the Fla Ida treatment has started yet? I am hoping your Sister is getting support from the Clinical team? Do they have a Clinical Nurse Specialist that can support them?
We would also be very happy to talk to you over the phone if that would help: How to contact Blood Cancer UK | Blood Cancer UK
Do take care and hopefully we will speak to you soon,
Gemma

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Hi Gemma , the flag IDA started last friday and so far his white count has gone back to normal levels but we have been here before with previous chemo drugs and the white count shot up suddenly so we are just praying this time the flag IDA works, thanks for the links I have made an telephone appointment with the clinical trials team at blood cancer uk to see what they can offer

Can i ask here does anyone know if we can get a second opinion in regards to treatment from a different hospital or consultant as the clinical team currenly dealing with us have said flag IDA is the last option but im sure there must be other treatments available.

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@Wh1tel1ght a great big welcome and I am so glad that you have found us, you really are doing every single thing you can to help you brother in law @Wh1tel1ght and I am so glad that you have found us I will copy your question to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK and @LauranBloodCancerUK.
Others have given you good responses and I am looking at your situation from a completely different angle please look after yourself as well as you are looking after your brother in law. Perhaps you and your sister might need to just spend some time together talking about how you are both doing and feeling and perhaps take care of yourselves as I expect you are both completely drained emotionally, physically and practically.
Running into brick walls is exhausting
You are a wonderful sister and sister in law and so caring.

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Hello again @Wh1tel1ght,
I am really glad you have an appointment with the trials team, they will do all they can to support you.
Your brother-in-law can request a second opinion regarding his treatment via his Hospital Consultant or his GP, here is some information from our colleagues at Macmillan that may be helpful: https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/getting-a-second-opinion. Treatment decisions are always made in Multi-disciplinary team meeting so several consultants, pathologists and Nurse Specialists will have been involved in the treatment decision so far. It is understandable that you would like to explore every option.
Do take care and do call if you need.
Gemma

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Hi @Wh1tel1ght I have been thinking about you and your brother in law and just wondered what has been going on since you last posted.
Look after yourselves xxx

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Hi Erica just a update on my brother in law
After two failed chemo regimes they have decided to try one final chemo regime the flag IDA protocol, i have been told its a salvage therapy with a slim chance of success. 3 weeks in and it seems to be working however due to the chemo my brother in law is severely neutropenic and recently had a chest infection. They treated with antibiotics so seems to be ok however last night he had a slight bleed on the brain due to low platelet count. Our family are just holding onto the hope now that he can make it to the end of the flag ida course , i think we have about a week left and hopefully he can reach remission so we can begin discussing bone marrow transplants.
I will keep you guys updated, thanks for your thoughts @Erica

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Hi @Wh1tel1ght. Thanks for giving us all an update. It sounds like a really difficult time for you all. Your brother in law sounds like he is battling through it. I hope next week continues in the right direction. How are you doing? Keep us updated when you are able to X

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Thanks so much for taking the time to update us @Wh1tel1ght.
Your brother in law is being given a treatment regime, just give it time, but it must be so hard to watch as you just cannot do anything to make him better.
How are you and your sister doing?
Yes, please keep us updated and we, on our forum, and the Blood Cancer UK support line are there for you both.
Look after and be kind to yourselves

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