Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
Hi there I’m new to this group and site after last week my 40-year-old brother was diagnosed with acute lymphoblastic leukaemia.
To say I’m upset is obviously an understatement but along with upset there are lots of other emotions including powerless confused angry frustrated etc
The diagnosis happened quite quickly it was suspected at first but then confirmed a couple of days later. He was supposed to start chemotherapy quite quickly but due to a mixup at the hospital it was delayed for two days he is now in the right place but has been told he cannot start chemotherapy until taking a course of steroids as he has lost too much weight to begin the chemotherapy I feel worried does this mean the cancer is going to have longer now to spread and become worse?
At this stage we don’t know how far the cancer has progressed so don’t have a very clear prognosis I’m so angry and wish this wasn’t happening to us
I have so many questions that I know can’t be answered Will he survive? Will he get better? When?
Any support appreciated feeling a little lost at the moment
Hi there.. Sorry you find yourself in this situation with your brother.
I was diagnosed with ALL aged 42 so not to different to your brother and for me it was a complete shock as well. I had been feeling a bit dizzy for a couple of months and then had a shortness of breath. went to the local A & E on evening and was diagnosed the3 next day. The symptoms was because I was anaemic as my haemoglobin was very low as the leukemia cells were now taking up 95% of my blood leaving no room for red cells.
I was quickly transferred to Barts in London and placed on the UKALL14 trial. This commenced with 7 days of high dose steroids then round 1 of chemo after that. (Steroids were historically used to treat cancer prior to more modern forms of chemo).
I was in hospital for about 4 weeks on the first round of treatment. This was followed by two further rounds of chemo ( in hospital for 6 weeks for 2nd round and 2 x 1 week stays for 3 rd round).
I had a stem cell transplant (modern day bone marrow transplant). That was 4 1/2 years ago. I actually got into remission after the first round of chemo over 5 years ago but I was a high risk of relapse hence the transplant.
I will be honest it is a tough regime of chemo but it can be done and you can survive and come out the other end and live a normal life. It will take time though and whilst everyone is different realistically it is unlikely your brother will be back to work within 12 months. Financially it can be hard as well as physically and emotionally.
The hospital told me a lot of information and I made sure that I didn't go near google. Someone in their early 40's getting ALL is very rare (normally it is the leukemia that young children get) and as such the data isn't really relevant and is out of date.
I am sure you will have lots of questions so feel free to ask away. No doubt some one else will be along shortly to introduce themselves as well.
Hi, thanks for taking the time to reply. It really means a lot. It’s also great to hear of someone who was in a similar situation and came through it! Congratulations! Do you know much about Philadelphia gene? He doesn’t have that so I think that is good news?
I try so hard not to look at facts and figures as I know they are not reliable since every case is different.
We are still only in the very early stages of it all and so still not 100% sure what all the details are. I suppose it’s just a waiting game. I find some comfort in thinking that IT IS treatable and he can survive this but it’s so hard for your mind to not start thinking horrible things.
He is such a positive, strong person so on one hand that’s good because he can fight this but on the other hand it’s horrible seeing such a strong person go through this. Like, your big brother is supposed to be there to look after you not the other way round - I know that sounds silly.
I just want him to be ok but just really wish this wasn’t happening at all.
If you have the Philadelphia gene it can be more difficult so yes that is good news. They will have done or will be doing a bone marrow aspirate where the go into the pelvis and extract some marrow to examine and then they will have more information in exactly what type of ALL it is. Mine was caused by the chromosome 4 and 11 switching tails. The bone marrow aspirates are painful even with local anesthetic but they are necessary and you do get used to them.. sort of!
Have they said what treatment he will be getting? As I said I followed the UKALL 14 trial protocol.
It is difficult for friends and family but he will need a good support network. We found social media was a good way to give updates to everyone and the support and encouragement that friends have helped a lot. One day at a time is the way to do things. The chemo when it starts isn’t too bad but it builds up and then you start to feel very weak. The sickness can be managed really well with anti sickness meds and he just needs to let the nurses know as soon as he feels sick. Going through the treatment he doesn’t need to be a hero and if he feels sick or has pain or discomfort then speak up. The range of drugs to counter all of these things is extensive and they work well.
As things progress I am sure you will have questions and these forums are a good place for support and also to hear about people’s journeys fighting and beating this disease. Everyone’s journey is different and expect the odd curve ball on the way.
I am sorry to hear of the diagnosis however I was also diagnosed in May of this year, I am 51 fit and healthy in fact i ran the London Marathon last year, you will get through this if you fight it and do what your told to do. I was also diagnosed with ALL Philadelphia negative and was admitted straight away on the UKALL14 Program, went through 2 weeks of Steroids then the first 4 weeks of chemo, back home for a week then back again for phase 2 another 4 weeks but I picked up an infection so it was 6 weeks. Then back home for 2 weeks before phase 3 (water torture) which I had 2 weeks of. They also found a donor a lady of 31 who was 100%, I had my stem cell transplant on the 5th October and I have been out for 2 weeks now, living in isolation at home. I am day 37 and everything is going to plan.........
Keep positive there will be dark days, get through the chemo for me 6 months and come out the other side with that shiny Cancers Survivors badge........
Thanks for taking the time to reply, blown away by your kind words. So so good to hear of success stories, it does make me feel positive knowing it’s possible to beat this.
Not too sure about the treatment yet, he lives a good couple of hours away from me which another reason I’m finding it so hard ☹️ I will find out when I visit him tomorrow.
He is a very positive person so I know he will give a good fight, he has young twins - what better motivation than that? But the doctor has apparently told him today that his chances are 50/50 and that’s really really brought me down what is that based on? Can’t think like that at the moment the thought of losing him is just too painful
Also congratulations on getting this far and I hope your recovery continues
Thanks for your reply again; it made me feel really positive but just had a doctor saying his chances are around 50/50 which has just devastated me and finding it hard to shake this feeling of having a big black cloud over me.
I wouldn’t read to much into the odds that they are telling you at this stage. I seem to remember being told the same at the beginning and at one point I think I was told 30%. Didn’t really worry me as even if they had said 1% then my attitude would have been that it was bad news for the other 99% but not me!
All he can do at this stage is stay positive and have the upmost belief in getting better. The thing is with Leukemia like many cancers is that it is not because of lifestyle which becomes a positive as you don’t need to beat yourself up about choices that you have made.
Having twins gives him something to fight for but it will be hard as they are unlikely to be allowed to visit. Certainly at Barts no children under the age of 12 were allowed on the ward as they carry so many coughs and colds.
That is where everyone must be very clear. If they don’t feel well or if they have recently recovered from a cold etc. then they can’t visit. It’s a non negotiable point. Your brothers immune system will be reduced to zero on several occasions with the treatment (neutophenic) and as such any infectious people are a big no.
It will all seem scary at first and I remember being scared in the run up to my first dose of chemo. The reality was I just fell asleep while I was having it and my hair didn’t instantly fall out and I didn’t feel sick. Sure that will probably follow and no doubt they will say his hair will fall out within two weeks!! In hearing that my teenage daughter dyed my hair purple.. why not we thought! Two months later I still had that purple hair!
He will get bored in hospital but the chemo will limit his attention span so easy to read magazines etc are good. Also if the hospital doesn’t have free WiFi (most do now) then consider upping his data allowance if he hasn’t got a big one.
Whilst he is on steroids he will probably be eating for England so it was always nice to get a call when someone was in the way to visit to ask if I wanted anything brought in. I ate so many Macdonald’s and drank chocolate thick shakes! It is always good to put on a few Linda as there will be times when he doesn’t want to eat and then he will have built up some reserve..
Good luck tomorrow.
Glad to hear things are going well post SCT. Yes the cancer survivor club is quite exclusive and the membership criteria is tough.
Feels good when you get there though!
Thanks again for your reply !
He is doing really well considering. I told him some of the things you said and it made him smile! Especially the bit about the purple hair!!
I’m not sure about the trial thing you mentioned? He just seemed to be saying chemo therapy and that was all at this stage.
So far they are ok about visiting but I think the nurses should and probably will get a little stricter. It is just not worth the risk.
It’s good that they’ve said even if the chemo doesn’t work there are other things they can try, at this stage I’m trying so hard to take it one day at a time. We don’t know what is round the corner. I just have to hope and pray everything will be ok.
I was diagnosed with ALL aged 46, that was November last year. I’ve just finished the intensive chemo, like your brother I had a week of steroids before the chemo started.
It’s a tough road, mine was made tougher as I picked up a lot of infections along the way but I’m out the other side. I’m not having a stem cell transplant as there was no perfect match and because I’ve reponded well to th chemo. Instead I’ve started 2 years of ‘maintenance’ taking chemo in tablet form at home.
Don’t look at anything online other than the Macmillan website. Bloodwise and Leaukemia Care have some useful booklets but my consultant said the science is moving so fast they quickly become out of date.
People have different views on surivival rates. I prefer not to read or be told them as there’s no telling which side of the ratio I will fall so to me it’s pointless information. My hubby has a different view so he’s read that page of the booklet and I haven’t.
Hopefully the medical team are accessible so I would direct all your questions to them, but make sure your brother wants to know the answers before you ask in front of him. I just took each day as it came, to begin with I couldn’t think beyond getting through the current cycle.
I’m. Ot sure how old the twins are but I have 2 young daughters who kept me going. I spoke to them every day on the phone and I had little notebooks that I’d write a message in for them to read at breakfast, normally about something that they were doing at school, that day. My hubby brought them in to hospital each day for me to write in, sometimes they wrote messages back. They also used to bring story books in for me to read to them when they visited
Good luck to your brother
I have just logged into this site having been diagnosed with ALL a week ago at the age of 40..finding I can be very positive during the day but the nights are tough! Also have two small boys at home so the advice on how to deal with it with them is really invaluable.
Some very inspiring comments above xx
First off, I am so sorry to hear about your diagnosis. My husband was diagnosed with ALL at the age of 36 in September 2016. He is now a year (to the day actually) that he had his stem cell transplant. We also have two young boys so I know how hard it can be but without them things would have been worse because somehow they just help you get through the day.
I am sure you will go through a range of emothions at different points during your treatment and that is completely normal. I hope you have a strong support system with family and friends because you need to lean on others from time to time and don't be afraid to do so.
Feel free to message any time and I wish you all the luck with your treatment.
I am rapidly approaching 5 years post SCT after being diagnosed with ALL when I was 43.
It was a tough journey with the treatment but I lead a normal life now with only minimal meds..
Your body takes a battering and it does take a couple of years to recover afterwards but then there is no reason not to continue life as it was before ALL arrived. My kids were 12 and 14 when I was having all the chemo and they coped really well and would visit often. Luckily they were old enough to be allowed in the ward.
Good luck and any questions feel free to ask.
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