Acute lymphoblastic leukaemia

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

Our son has been diagnosed with ALL!

Vanners
Posted by

7 days ago our son Michael was diagnosed with ALL.

He had a rash and had been feeling tired, so made a GP appointment 

After visiting the GP on Friday afternoon he was sent directly to Hospital for bloods to be taken. A blood count was done and they discovered his blood was all messed up. He was kept in Hospital, further blood tests were taken over the weekend and Monday morning he had a bone marrow biopsy. 

The results of the biopsy was that Mike had ALL.

Steroids were started immediately and first Chemotherapy session was on Friday last week.

Mike is 34 years old, 35 in a few weeks and is married to Faye and they have a beautiful daughter called Matilda who will be 1 year old in 5 weeks time.

we are in complete shock at the diagnosis, Mike has always been very active, looks after himself with regular exercise & eats well. Mike & Faye are great parents to Matilda. She is absolutely wonderful & adorable. 

We as a family are uncertain as to what lies ahead.

Mike is being treated at Derriford Hospital in Plymouth, Devon

Mark
jordsped
Posted by

Hi ‘Vanners’

I was diagnosed with ALL at the age of 30, following similar symptoms as your son. I’m also married, and have two children (one of whom were born three weeks after I was diagnosed). I’m now 33, in full remission, back working full time, back playing football and in the gym, probably even fitter than I was before I was ill!

Obviously every case is unique, but I’m living proof that it can be beaten, and that a normal life can be resumed at the end of it all. I won’t lie, the first year was really tough, the second and third years not so much but still a few small bumps in the road. 

With a positive mindset, and support from family, it makes things much easier. Without my wife, parents, brothers etc, I don’t know how I would have done it. Their support kept me going through the toughest times.

I wish you all the luck in the world. You know where to find me if you have any questions at all.

Jordan

Vanners
Posted by

Hi Jordan,

many thanks for your message.

we are learning new things everyday regards Mike’s condition, however I wasn’t aware the duration of the treatment was as long as 3 years. Why is this?

many thanks Mark

Mark
jordsped
Posted by

It’s dependant on whether he has a bone marrow transplant. Unfortunately neither of my siblings were a match for my bone marrow so I went down the chemotherapy route. It was a year of intensive treatment followed by two years of maintenance. 

Thehighlander
Posted by

Hi Mark and good to see you have found your way over to this corner of the Online Community and some great support from Jordon.

You are going to find that everyone do go on individual journeys with treatment tailored to suit where everyone are at and unlike Jordon I did go on to have two Stem Cell Transplants with cells from my brother but great to hear that Jordon is doing good.

Information is power in a blood cancer journey as this will help everyone to get a battle plan in place to get through this so I would always recommend that you have a family note book.

The note book is the place where you all record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So Mike can say ‘yes I have some questions’ and should go through each question one by one, making sure he writes down all the answers he gets and if he does not understand something he needs to stop the Consultant and ask them to put into language that he understands and remember the record everything. He does not want to be going home after an appointment saying 'I wish we has asked ........'

He needs to try and understand why his team are recommending his specific treatments and it's always good to look at the future and understand what would be the next if there has to be a next.

The note book also helps everyone sleep!! As these questions often come at silly-o’clock so get the note book(s) out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear and go immediately for a cup of coffee and review what was said.

Get contact names and numbers for getting questions answered and where required a short cut to be seen fast if required.

We also have our expert section in 'Ask an Expert' at the top but you will have to wait a few days for answers.

We are always around to help out.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Vanners
Posted by

Ok, I think it’s just my lack of knowledge and understanding of the treatment process that’s causing me the problem here.

i thought the only way of correcting the problem ( bone marrow) was a transplant, our daughter is being screened to see if she’s a match to Mike, fingers crossed she is.

If no donor was a match to Mike my understanding was that he wouldn’t recover from the illness.

thanks again for your help.

Mark
Thehighlander
Posted by

Mark, there are lots of tools in the Heamatologists tool box so lots of 'what next' and lots of hope.

We do have a dedicated Stem Cell Transplant Forum as the SCT journey is rather different from normal chemo cycles so when required please come and find us and you will find the SCT Forum Link at the bottom of my posts.

The national and international Stem Cell Register can be searched, this can take time so lots of waiting to be done and lots of fighting the battle between the ears.

A good number of us have info in our profile and you can find this by hitting our forum names. 

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Vanners
Posted by

I have just had a look at the information about SCT.....

its a lot more involved than you think!

our daughter is being tested to see if she’s a match, fingers crossed here!

thank u for your help, very much appreciated

Mark
Thehighlander
Posted by

Good morning Mark, Mike is embarking on an unwanted marathon and its important to take each day of this journey as it comes......this is not a sprint with quick and simple answers but a journey that is complicated and often fall of twists and turn but all do-able.

ALL is often found in younger people but one of my SCT buddies who I walk my second SCT with had ALL and he was 61 at the time and yes he is doing great so be encouraged that this can be done.

Watch where you research for information as some, no a lot is just not up to date and very often written with a negative point of view. So stick to trusted areas like Macmillan, Cancer Research and you will find some great info in the Bloodwise site. This info book for instance  about Stem Cell Transplant is very good.

As you will see from some of our stories we often go on different journeys but all looking to get to at the same point hearing the word remission.

We are always around to help out.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Paul1969
Posted by

Morning Mark

Sorry to hear your sons news. It is always a shock and with ALL it mostly seems to be sprung on you all of a sudden.

I was diagnosed in Sept 2012 aged 43. Apart from the ALL i was fit and healthy. I got into remission early in the cycles of chemo but decided to go ahead with a SCT rather than maintenance chemo as it was likely if i didn't that the ALL would come back.

I had my SCT in May 2013 which was a 9/10 mismatched donor (delayed from Jan 2103 as I reacted to one of the chemos and ended up with a bad bout of acute pancreatitis). I think it took the team at Barts around 4 weeks to confirm they had found a suitable donor on the register by the time they had him in for tests etc.

I am now over 5 years post transplant and I am really well. My immune system is still temperamental but I have only been off immune suppressants 2 1/2 years so it is still very young!. However it is managed very well with some easy medication which allows me to do anything I want, go anywhere I want  and work full time running my own business.

As a few people have said everyone's journey is different. The regime for ALL is usually a very tough one ( I was on UKALL14 trial treatment). There will be highs and lows but if Mike takes it one day at a time then he can get through it and out the other side.  It will take time though as it isn't a quick fix so expect it to take a fair few months with some relativity long stays in hospital. I did a few 5-6 weeks stays.

Good luck and if you have any questions feel free to ask.

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.

 

Vanners
Posted by

Our daughter has been screened and we have just been informed that she is not a match to her Brother, does anybody know how this will affect Mikes treatment and his chances of recovery from ALL?

many thanks, Mark

Mark
Hamish72
Posted by

Hi Vanners so sorry to hear your devastating news. Have you discovered The Mustard Tree yet at Derriford? They are the Macmillan guys there. 

My sister got admitted to Derriford yesterday for her SCT (on the 30th). I popped into The Musrard Tree today and they were a great sounding board with lots of information.  I also recommend the Bloodwise website and downloads in particular. 

I have also found the Highlander and the other guys on here a great help to deciphering the long road ahead. 

and maybe we’ll cross paths at Bracken as I am in every day visiting. 

Sending love and health vibes to you, your son and family. 

Julie x

Vanners
Posted by

Yes we have found the mustard tree, I was down there yesterday afternoon.

my wife and I have an appointment next week to speak to someone down there.

thanks Mark

Mark
Paul1969
Posted by

Hi Mark

My brother wasn’t a match either when he was tested. The hospital went on and found me a donor. They will have been looking at the register in the meantime as they know that it isn’t uncommon for siblings not to match. I had a 9/10 match in the end as I had some unusual tissue types apparaently that were difficult to match. It isn’t matched on sex or blood group etc.. 

I don’t think it will alter the treatment a great deal. Do you know what treatment plan he is following? I was on UKALL14 but that was 6 years ago. 

That consisited of three rounds of chemo. The first two were about 6 weeks each round mostly hospitalised. Round 3 was two 5 day stays in hospital. Then there was 7 days of conditioning per transplant and most people are around 3 weeks after the transplant before they go home. It can be a longer process and it depends when your son gets into remission. I was fortunate andgot into remission after round one.

So the initial treatment including transplant takes about 6 months. 

Perhaps speak to your sons CNS (clinical nurse specialist) about the treatment plan as they tend to have more time than the consultants to sit and talk to you.

Try not to worry too much as I am sure they will find a donor on the register.

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 morning Vanners, some great support from the others.

The chances of a sibling match is always low at about 20-30% so his team will also be looking far and wide across the world, this will take time so you all need to hold on tight and not panic.

This is truly a battle on two fronts. The medical battle and that is where his team comes in, the battle between the ears is where all the family have to pull together and fight.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela