Acute lymphoblastic leukaemia

A support group for anyone affected by acute lymphoblastic leukaemia (ALL) to come together, share experiences, and ask questions.

Husband diagnosed with AML and ALL

Kerwayn
Posted by

Hi ive just joined, and this is my first post, sorry if it’s a bit of a ramble. My husband thought he had tonsillitis, last week we were on holiday. Husband didn’t feel great GP sent him to hospital, he has been diagnosed with AML and ALL we have been informed that this is super rare. Is there anyone out there that has this. 

Paul1969
Posted by

Hi Kerwayn

Sorry you find yoursef posting here. You must both be in complete shock! I have only had the ALL part of the diagnosis your husband has been given. That was 6 years ago and following a stem cell transplant in 2013 I am now doing really well.

i don’t know if anyone else will be along who has had both but feel free to ask any questions you may have regarding the ALL side of things.. 

Good luck to you both 

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

 

Paul1969
Posted by

As a thought also try posting in the stem cell transplant forum. Whilst you are not at that stage yet and it may not be the route your husband follows there will be a lot more people who have had a lot of different experiences with leukaemia that may be of help. 

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

 

Thehighlander
Posted by

Good shout Paul, worth casting the net far and wide.

The link for the Stem Cell Transplant (SCT) forum is at the bottom of my post.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

emma_b36
Posted by

Hi Paul,

My Dad has just been diagnosed with ALL on Friday, he is being treat in the Freeman Hospital in Newcastle.  At the moment he's really struggling with an infection to his bowel/stomach which is not shifting, if anything is getting worse.  The Doctors want to start chemo asap however they can't do this until the infection subsides.  I can't believe how quickly he's gone downhill since Saturday, I'm hoping it's just the medication he's on (morphine, antibiotics, blood transfusions etc).  Did you have any experience of issues like this when you were diagnosed?    He's 52 and fit and healthy in general, never smoked, not a heavy drinker, not overweight, but he's so weak right now.

Any similar experiences would be really helpful.

Thanks

Thehighlander
Posted by

Hi Emma  and welcome to the Online Community but sorry to see you joining us. I am Mike  and I am dropping in past from one of our Lymphoma Forums to say hello.

This is a hard time for both your dad and the family but it does help to talk with others who are on the same journey so lets look for Paul and the others to pick up on your post.

It would be good if you would join the ALL forum (just under the ALL heading) and also indicate how you want to receive email notifications of answers to your posts (see on the top right)

It would also be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

Unfortunately infections are indeed part of the journey but the team at the Freeman are great. I am in Inverness but was down to see a specialist in the Freeman during the planning for my treatment.

My journey was full of ups and down and I have lost count of the infections I had and the amount antibiotics, pain meds and transfusions I have had over my long years but on the whole blood cancers are treatable and can achieve great results, I actually made good friends with 60 year old man when going though some gof my treatment and he is doing great - so be encouraged.

Infections can bring the fittest person down to their knees rather quickly as his bodies energy is being used to fight this. You need to trust his team and look to get this under control so he can start chemo.

It may help in the future to start your very own thread to keep your help together, you can do this by hitting the 'Start a discussion' tab and post away.

Keep posting as we are around to help.

All the best.

Mike - Thehighlander

Some journeys take us far from home...... but some adventures lead us to our destiny  - CS Lewis

emma_b36
Posted by

Hello, thank you so much for that, that really helps. I will read this out to him when i see him tonight to try and raise his spirits a little .

I’ll sort my profile and add some information also. 

It’s nice to read positive stories and i keep thinking he’s in such good hands and in a great position general health wise, we just need to stay positive and make sure he is also.  I know he’s getting very agitated in hospital which is understandable, he’s very uncomfortable at the moment. 

Thanks you again

Emma

Paul1969
Posted by

Hi Emma

Sorry to hear the news about your Dad.. I* am sure it will have come as quite a shock to everyone.. I can still remember when I was told and I think I spent the first month in denial!

Yes during the course of treatment I had infections and complications.. I had sepsis, the BK virus, Epstein Barr virus (glandular fever), pancreatitis, GVHD, bile acid malabsorption plus probably some minor ailments I have managed to forget..

The first infection is scary.. your Dad is in hospital, just diagnosed with ALL and now he has an infection and is getting pumped full of drugs and seems to be getting worse..... BUT what never ceased to amaze me (and my wife who is a nurse) on my journey was how quickly the human body bounces back.. You can be throwing up and bad one day and two days later telling friends to bring in a MacDonalds when they visit!

The morphine (is it injected or oramorph?) will make him sleepy and sluggish.. the antibiotics will be IV (intro venus) and will be strong and will knock him out for a bit before they really kick in. Give it a couple pf days and hopefully you will see and remarkable turnaround.

Depending on the treatment regimen they put him on (I was on UKALL14 ) they may put your Dad on high dose steroids for a week to begin with before they start chemo. The only reason I mention this is because I got myself all revved up thinking chemo was on its way but it took a good week before the first dose (during which I just drifted off to sleep it was such a non event!).

So fingers crossed but hopefully in a few days your Dad will be feeling much better and will be ready to begin the real batle with the ALL.. I am over 6 years since diagnosis and "cured" and doing fine.. so it is a battle that is winnable and normal service can be resumed afterwards!

Good luck and feel free to ask any questions you want.

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

 

emma_b36
Posted by

Hi Paul,

Thanks so much for the response, I went in to see him last night and I read this out to him, I think it really helped as he'd had such a bad day yesterday. 

We're all very concerned about this infection he has in his bowel, it's just not shifting but I guess with his immune system being so low it's going to take a lot longer for any antibiotics to take hold... it should help with starting on the steroids a couple of days ago too.  I think it's just the amount of pain he's in is really dragging him down, he said he just needs it to go away.  On a positive, his obs are perfect, temperature back to normal, BP, respiration etc.  My mam is going to speak with the doctors today to get an update on things as she didn't manage to yesterday.  I think we just need peace of mind that this isn't uncommon and nothing sinister, and they're not overly concerned about it, as we are. 

It's great to hear stories of people battling through it, I'm trying to keep him positive but within the space of 5 days his whole life has imploded, so I think he's still in shock and probably feels like he'll wake up from a bad dream any time.  He really perked up after I'd visited last night though which was nice.

Thanks again for your response, it's been such a help to us all.

Emma x

Paul1969
Posted by

Hi Emma

Was just wondering how your dad has been getting on?

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.