Acute Lymphoblastic Leukaemia

Hi loulou3105 and a warm welcome to the Online Community although I am so sorry to hear about your daughters diagnosis. I am Mike and I help out around our various Blood Cancer groups.

I don’t have ALL  but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma / Blood Cancer ‘type’ is different I understand the challenges of the journey well.

Talking with others who are walking the same journey can help so can I recommend that you consider joining our supportive Acute lymphoblastic leukaemia group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and talk with others who are supporting family and friends on their journey.

If you'd like to connect in with a group click on the Green (Bold) link I have created above. Then once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join ]button under "Group tools."

You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go.

You could copy and paste the text from this post into your new post and as always you can reply to existing ‘Discussions’ by click [reply].

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear and our Cancer Nurse Team in our Ask an Expert section helpful but do allow a few working days for a reply.

To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section. 

Talking to people face to face when on a cancer journey (patient or family) can be very helpful so do check to see if you have any Local Macmillan Support in your area.

Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family.

Always around if you need further help in navigating the community.

All the very best.

Thanks so much for the link to the ALL group. I will have a read of all of the posts and I am sure they will be of great use to myself and my husband moving forward. I think we are both still in shock and it will take time to become accustomed to this being our new normal. I am really happy that you are still doing well 23 years on and it gives me hope that we will be able to reflect on our own journey in the years to come and have a similar outcome with our daughter doing well and living a good and happy life. Many thanks for taking the time to reply.

Hi loulou3105

Sorry to hear about your daughter. I can see mike has already provided some information and let you know about the ALL forum. I remember the shock of the diagnosis when I was told I had T cell ALL back in 2012. I was 42 at the time and it was completely out of the blue. I had been feeling a bit dizzy and then had some shortness of breath and a tight chest. All of which were the result of very low Haemoglobin.

I was treated on the UKALL 14 protocol. You can click on my profile HERE  and read about my treatment and journey. 

The first round of chemo was Ok and I felt OK during it. The lumber punctures with the chemo were not painful but felt "odd". I did suffer with headaches after these and drank a lot of coke and coffee beforehand as this supposedly helped. My ALL never crossed the spinal membrane and hopefully your daughter will be the same. 

With regards to support I think you have to take one day at a time. There will be good days and there will be bad days. There will be days when she asks you to bring her something to eat and when you get there she wont fancy it anymore. There will be tears and there will be laughter.  The thing to remember is that whilst the treatment is tough it is possible to come out the other side and be fine. 

If you have any questions feel free to ask and as Mike said feel free to say hello in the ALL forum.

Hi Paul, thank you for your reply and I am glad you are doing well today.

My daughter has been told she is Philadephia negative which I think is good news as she won't absolutely have to have a stem cell transplant. I am not sure though what it actually means moving forward with her chemo treatment and I will have a long talk with her consultant to clarify the situation.

We found out in a similar way to yourself, my daughter had some shoulder pain and then it moved to her hip and lastly she had chest pain and felt short of breath this all occurred over a short period but was at the same time as her joining a gym so we initially thought the aches and pains were due to the exercising.

I urged her to get a blood test and she did and was contacted the next day and the doctor then rang to tell us there was an issue with her haemoglobin and platelets being worryingly low and other factors within her blood showed an issue. My daughter is over 18 and lives away from home as she has graduated and has begun her career in London so we travelled down to Barts and met her there where she had a bone marrow extraction, and everything has snowballed and 5 days on we are now back in Yorkshire with our daughter and she is being treated at our hospital which is a very good one and we have confidence in her consultant and she is now close to us and her sisters.

I am trying to process all of the information and we are still waiting for some results to come through which when they do will give us a clearer idea as to what we are facing.

I keep telling myself to take it one day at a time which is not in my nature as I like to plan and be two steps ahead so I am going to have to learn some patience and my daughter is trying to use humour to cope and we have found ourselves laughing but also crying at odd moments and it will just take time to come to terms with the situation.

Many thanks for taking the time to reply and I will look through your profile and read your journey,

Hi loulou3105 That's good your daughter is Philadelphia negative as well and she is young so as you say hopefully she wont need a stem cell transplant. I was treated at Barts as our local hospital couldn't treat me. The travelling for family to visit was difficult as I was in London so your daughter being local to you will mean you can support her a lot more. 

We found the CNS (clinical nurse specialist) was a great source of information and was always easier to contact than the consultant. With regards to questions for your Daughter's team try and make a note of them as they come into your head either on a phone or in a notebook so when you have the meeting you can remember all the things that you have thought of!

Yes a one day at a time approach helps as there tends to be bumps along the way with the treatment but some longer term goals of what you might do and where you want to go together once the treatment is over helps to keep the spirits up as well.