New to ALL - UK: Hi there I’m new to this... - Leukaemia CARE

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New to ALL - UK

Clarence45
Clarence45
12 Replies

Hi there

I’m new to this site. My husband was diagnosed with ALL about 7 weeks ago, he’s just completed his initial phase 1 induction and we’re awaiting the results of a bone marrow biopsy on Thursday.

All of this is still very new to us both, and although I’ve got over the initial shock of the diagnosis, I still can’t quite get my head around everything that’s happening. I still have so many questions, not only about the treatment but also about the financial side of things (trying to work out what we might/might not be entitled to).

If anyone has any useful coping strategies, I’d love to read about them.

Thank you :-)

12 Replies
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2003UK
2003UKChampion

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.

1 like
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JigFettler

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

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NicoleLeukaemiaCare
NicoleLeukaemiaCareAdministrator

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.

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Clarence45

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.

3 likes
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Feline-Fan

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

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Clarence45

Hi there Feline Fan

Good news that you back in remission. Stay strong, you got this !!!!!

Put that nasty disease back in it’s box where it belongs!

Sending you best wishes

X

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Feline-Fan

Thank you

You too

X

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Cyprusfan

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.

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Christiana_

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

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Cyprusfan

Hi Christiana. You do not know how encouraging it is for me to read your post. My son is 25 diagnosed on 25 August 2019 a date which is etched on my brain. He has ALL B-cell. Currently in phase2 and was told 4 weeks ago he is in remission. ..however the intensive treatment still is continuing and which will lead to a bone marrow transplant. Our daughter is a

match for him.

It's turned all our worlds upside down. He only graduated middle of July then 4 weeks later this nightmare started after a trip to A & E.

What I wouldn't give to have our normal lives back pre 25 August. Apologies for going on..

Take care.

Hayley xx

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Christiana_

Hey!

No need for apologies on this site. It’s full on sharing here with lots of understanding and shared experience.

You should look up the willow trust foundation for a possible treat at the end of/during treatment.

It’s a long hard slog but just keep taking the baby steps......

Brilliant you have a good match with your daughter.

Sending you all lots of positive thoughts and wishes for peace in the chaos....

C x

You might like to check out my treatment ‘diary’/blog on www. christiana saberton.wordpress.com?

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Cyprusfan

Thank you so much for your reply. Nicholas has been sent Willow foundation paperwork. We will definitely look into it.

What I have learnt is that things have to be taken day by day, week by week.

It's a world that you always think happens to others ..I guess we are those others now.

It's surreal.

Thank you for your kind words. I will look on your blog

Hayley x

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