Hi there, I am so glad you have found this forum. If you are anything like me you might both be very anxious and fearful, your husbands diagnosis must have rocked your world. What helped me was to sit down with my husband and write down all our questions, fears, thoughts and feelings we would like questions to from my medical team. Perhaps it would also be useful to both sit down and write down the same with financial matters. When I feel so out of control writing things down seems to help, especially as I walk into an appointment and my mind goes blank, that is why I also have to write responses down and actually have the courage to ask those follow up questions.

The Leukaemia Care support line is free from UK landlines and mobile phones to chat things over with and get information on financial support:

Email: support@leukaemiacare.org.uk

Freephone helpline: 08088 010 444

Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm. We are also here to support you both. Look after yourselves and I would say communication is the key. If you are both nosey like me I find fresh air and appropriate gentle exercise is useful and free.

Hi! Welcome!

I have CLL, I guess ALL is a kind of accelerated version of the same thing.

Please accept my respects for what you are going thru.

Confusion and disorientation is part of the process. Know your rocks and supports. Ask questions. When you dont understand ask again, and again.

And please share your experiences because others will find strength and courage from you.

Sincere best wishes.

Jig

Hi there. Welcome to the forum.

In terms of treatment, we have a booklet on treatments for ALL. You can read it online or order a free copy to your house > leukaemiacare.org.uk/suppor...

If you wanted somebody to talk to, our haematology nurse is on the freephone help line tomorrow and Friday evening 7pm - 10pm. She has years of experience in haematology and can answer absolutely any medical query you may have. The number for her is 08088 010 444.

Finances are undeniably hit by a leukaemia diagnosis. A member of our advocacy team could potentially help you to figure out what you may or may not be entitled to in the coming months, savings out there that are available (reductions to certain electricity tarriffs etc). You can contact the advocacy team on advocacy@leukaemiacare.org.uk

In the meantime, take care of yourself. Our helpline is open for you too - even if you just want a sounding board for everything that has happened so far. Our general office is open 8.30am - 5pm each day for a friendly ear or just somebody to vent at about your current situation.

Morning all

Just a quick update. We saw the consultant on Thursday evening and we had some encouraging news- my husband is now in remission. I know that doesn’t mean he’s cured of ALL, but it’s a step closer. He starts the consolidation stage of chemo on Monday, different chemo drugs and more intensive. For the first time during this journey my husband has admitted he’s feeling very apprehensive about the next phase. I shall be doing my best to support him through this.

Hi Clareence45

I also have ALL with the Philadelphia+ Chromosome version.

I was diagnosed in June ‘18

Went through Induction too. Was in remission from early October. Did Consolidation, then started Maintenance in Jan this year.

Sadly I relapsed in July.

Started Blinatumomab (an Immunatherapy drug) in July.

Found out last week, I’m back in remission again. Start cycle 2 of it this coming week.

Wishing you & your hubby all the best.

x

Thank you

You too

X

I really do feel your pain. It has happened to our son 3 weeks ago. Diagnosis ALL out of the blue aged 25. Just done 2 weeks of phase 1.

Hia

I’m an ex ALL protocol patient. My diagnosis was acute lymphoblastic lymphoma (t cell). My stem cell transplant was just over 6 years ago now, so I imagine you’re on a much more advanced version of the treatments I had, which were of course cutting edge at the time!!! Even so every journey is totally different.

So many Congratulations on your husbands remission 🎉🎉🎉 and I’m hoping consolidation is going ok..... you’re both so far through this now. One day at a time....

Hoping you've found the financial advice you sought. In case no one has mentioned it I suggest you also apply for a blue parking badge.... it was a massive help to us when I was ever allowed out of hospital, also for trips to other more specialist hospitals whilst I was having treatment (TBI & transplant for me were elsewhere and hospital transport was fairly long and arduous!!!!). My husband had foresight to apply for benefits for me as my sick pay ran out during treatment. With hind sight he could have applied for carers/attendance allowance too... there’s just sooooo much going on though isn’t there it can be hard to even have time to think in straight lines!! For us the treatment path and the staff around were so focused it provided an anchor of sorts, direction and inappropriate/dark humour to keep the smile on our faces.

Presumably you’ve also sought some input from Macmillan. We found them to be really great down the phoneline for general advice and were also able to apply for a couple of their grants towards fuel, hospital parking, increased home bills etc.

Wishing you both a positive next phase.....

C x