New diagnosis of ALL for my son 25 ..so s... - Leukaemia CARE

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New diagnosis of ALL for my son 25 ..so scared

Cyprusfan
Cyprusfan
22 Replies

Scared mother of a 25 year old son recently diagnosed with ALL totally out of the blue 3 weeks ago

22 Replies
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Jm954

Hi there,

I'm so sorry to hear of your son's diagnosis, it must have come as such a dreadful shock.

Whilst this is devastating news there is much to be hopeful for as treatments are the best they have ever been and he is young, so hopefully, mostly fit and able to cope with them.

There are several types of ALL and the doctors will have spent some time testing his blood and bone marrow to make sure he gets exactly the right treatment for his type. Have they asked him about storing frozen semen in case his fertility is affected?

Presumably he has started treatment now, 3 weeks after his diagnosis, and you have more information than at his diagnosis. This treatment is a marathon rather than a sprint so try to take each day as it comes.

Leukaemia Care have a helpline: leukaemiacare.org.uk/about-...

and Bloodwise: bloodwise.org.uk/info-suppo... with a free support line on 0808 2080 888 bloodwise.org.uk/info-suppo...

With very best wishes for you both

Jackie

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Cyprusfan
Cyprusfan
in reply to Jm954

Hi Jackie.

Yes they did all the fertility steps week 1. Doctor mentioned bone marrow transplant possibility. White cells/haemoglobin have reacted well so far. It is a huge shock as his symptoms were fatigue/dizziness/general feeling of being unwell. He took himself to A & E as it was painful on breathing in. Nurse asked him if he was usually so pale. Did blood test found out he was anaemic and something on blood. He had it for 14 days!... make it worse he is in London having graduated in July from uni and had a job trial 2 weeks ago. We are from Wales and are staying in our touring van until he gets transferred back to Wales after phase 1.

Thank you for your reply

Hayley

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Jm954
Jm954
in reply to Cyprusfan

Hayley, you must be very proud of him as he sounds like such a sensible young man, not many would have taken themselves to A&E as he did. It's not unusual for the first signs and symptoms to be so vague and that action might have saved his life.

Have they said what sort of ALL he has ?Ph +ve, T cell or B cell? A transplant is always a possibility but they will be very experienced so don't worry about that, at least not until you know more. He's fortunate to have such caring parents able to be with him during this time. please let us know how things are going, we will be thinking of you all.

Take care and best wishes.

Jackie

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Cyprusfan
Cyprusfan
in reply to Jm954

Philadelphia negative B Cell Jackie. He has appeared to responded well so far but the doctor mentioned another gene which I can't remember the name of this is the reason they think will require a bone marrow transplant. Our daughter getting blood test next week for a match but they don't appear to be in a rush to do it. White cells or nasty ones I call it were 100 on admission and 2.55 week before haemoglobin 30 on admission and 90 last week. He has only had 2 blood transfusions in last 3 weeks. Eating well etc.

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Jm954
Jm954
in reply to Cyprusfan

Gosh Hayley,

even in the world of ALL, those are striking results on admission. How he was even standing with a Hb of 30 is remarkable.

There are a few genetic abnormalities that occur with ALL and hopefully the information you've been given has answered your immediate questions. They will need to get him in remission before the transplant can be done to give it the best chance.

Co-incidentally, my son was an unrelated stem cell donor for a young man with ALL a few years ago when he was just a few years younger than your son. He cried when he heard from the person (through the London hospital that he donated at) that it had been a success and he had saved his life.

Every best wish

Jackie

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Cyprusfan
Cyprusfan
in reply to Jm954

We didn't even know he was in hospital on the Friday night. He rang us on Sunday morning to say he was in with a chest infection bit of fluid on the lung ..then rang my husband at 4 pm Sunday and told us what the hospital thought it was..or rather his girlfriend took over the call. It was bank holiday weekend we were in a holiday resort with our dog and daughter as a last summer break. Couldn't leave our van in storage so set off for London Monday morning. Make it worse nicholas was due to move out of his student house 6th September had to move 3 years of stuff out then our daughter we had to move up to London for her uni weekend to start . It's all happened in a matter of weeks. That's encouraging about your son donating. Nicholas walked to A & E after ringing 111. The hospital is a short walk. He didn't want to bother ambulance as he knew they would be busy.

Thank you for listening.

Hayley

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Jm954
Jm954
in reply to Cyprusfan

Oh my goodness!

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Cyprusfan
Cyprusfan
in reply to Jm954

Absolute rollercoaster. Oh yes and he had a job alert for a assistant cameraman last Wednesday from BBC for Attenboroughs Planet Earth. He cried like a baby about that as he qualified as a cinematographer. People have told me to advise him to email and explain situation and please keep him on file. He is doing that to keep himself positive.

It's remarkable what your son did by donating. I have sent for a swab kit to join register. I donate blood but have never thought about marrow until now 😔..

Thank you for listening

Hayley x

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Jm954
Jm954
in reply to Cyprusfan

Oh my gosh, definitely send that email to the BBC! Fingers crossed they get in touch with him in the future.

xx

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Jm954
Jm954
in reply to Cyprusfan

How is your son getting on with his treatment Hayley? I've been thinking of you all.

Jackie

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Cyprusfan
Cyprusfan
in reply to Jm954

Hi Jackie

He is doing okay touch wood. Been in hospital twice in 4 weeks for temperature spike but we think it was more to do with our electronic ear thermometer!...as once in temperature and bloods okay. They gave us a under tongue one from hospital which is better. Had his first bone marrow results since diagnosis. Results 2 weeks ago showed remission....however we have a long long way to go ...starting phase2 tomorrow which is 5 days of chemo it's going to knock him for six. We are still looking at a probable bone marrow transplant eventually. I still can't believe I am in this surreal bubble. Thank you for asking. Hope things well with you. X

Hayley

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Jm954
Jm954
in reply to Cyprusfan

Hayley,

That all sounds very positive even though, as you say, there is a long way to go yet.

I'm really happy to hear things are going well.

Phase 2 already, time is flying by. I hope things continue as smoothly.

Very best wishes to you all

Jackie

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Cyprusfan
Cyprusfan
in reply to Jm954

Thank you Jackie.

He is getting his girlfriend Alice to shave his head 😔😔.....he is approaching it with his own blend of humour!....just come into lounge with a mohican. This is the bit I been dreading but I was thinking back to when we had initial diagnosis and didn't know if it could be treated or not. I remember seeing a lady on Nicks ward first time he was admitted to Kings hospital and she had no hair and I remember saying to Paul my husband please let Nick get to that stage as that is when they can do treatment...I guess we have thankfully reached that stage. Xx

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Jm954
Jm954
in reply to Cyprusfan

Hayley, it's funny how we become grateful for all sorts of small things in these situations.

Your son sounds like a wonderful young man and with the help of everyone, he will cope and perhaps even be a stronger more compassionate person as a result of this experience.

xx

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Cyprusfan
Cyprusfan
in reply to Jm954

It is a difficult time for all concerned. I feel sorry for him in that he graduated from uni mid July world was his oyster then bang 4 weeks later this surreal nightmare.

We just have to get through it I guess as best we can.

I am so thankful I found this group as it seems more personal than some other ones out there .

Thank you for your support

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DrunkJam_UK
DrunkJam_UKAdministrator

Sorry to her of your news, it's a scary time. This board is great for people to listen and to ask things of. Feel free to ring Leukaemia Care as well, they are very helpful.

I will say, treatments have got so much better. I was talking to our HETAS installer (who comes to check our stove every year) because he was asking after my husband who is away on chemo. Turns out, he also had ALL, out of the blue in his early 20s. He is completely well now.

I am also in Wales, so, do shout if you want a chat!

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Beans-on-toast

I had T-ALL, diagnosed November 2014. Treated at the Christie, Manchester on UCAL14, no transplant. Happy to share my experiences.

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Cyprusfan

Thank you so much. It is the shock of it. You always think it happens to others . We are now those others.

Hayley

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NicoleLeukaemiaCare
NicoleLeukaemiaCareAdministrator

Hi Cyprusfan. Welcome to the board but so sorry to hear about your lovely son. Such a shock for all of the family.

If you need somebody to chat to, we have a nurse on our helpline five days per week:

Monday 9am until 5pm

Tuesday - Thursday 9.15am - 2.15pm

Thursday and Friday evenings 7pm - 10pm.

If you just want a friendly ear to chat or rant at, the helpline is open 9am until 5pm every weekday and we'll do all our best to support you.

We have booklets available that you all can read, or if he'd like somebody to talk to who has been through similar, we may be able to provide him with a buddy?

As you are quite a way from home, there is also a hospital travel fund that we can provide too - details here: leukaemiacare.org.uk/suppor...

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Cyprusfan

I think a buddy may be good of similar age. I will ask Nicholas.

Thank you so much

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2003UK
2003UKChampion

Hi, if you are anything like me you must all be in complete shock and feel very fearful, you have all had a life changing news, I found my feelings and emotions were on high alert for a very long time. I think also being a mother adds maternal, protective feelings into the mix. As your son is 25yrs old perhaps you might feel helpless as well because, although he is your 'little boy' he is also an adult and might or might not want you involved as much as you do. Perhaps just being there for him and keeping honest open lines of communication open is all you can do. We are all here to support you so please keep posting and don't forget the Leukaemia Care support line is free from UK landlines and mobile phones:

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

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Cyprusfan
Cyprusfan
in reply to 2003UK

That's exactly how I feel helpless. And he doesn't like fussing either.

Difficult for him as he graduated in July after 3 years in uni so has had independence that's the worse part. He should be starting his career now

Thanks for listening

Hayley

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