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Acute Lymphoblastic Leukaemia - just diagnosed!

Hello, sorry I didn’t reply but have only just found your comment. I am now halfway through my chemo blocks and not feeling too bad thankfully. I am due to have a bone marrow transplant in Aug/sept time, which I am getting a bit nervous about. I have read quite a lot about it and follow a Facebook site for info. The fb site is American and I am finding is quite graphic and negative so might stop following. I Know it is not going to be all plain sailing but I need some positivity as well. I am generally a positive person so I am really trying to keep that going. I am particularly interested in hearing from anyone who has been through the stem cell process. I understand they have found me a 10/10 match and my consultant says my body is in good order so fingers crossed all will go ok.
Summertime

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Hi, it looks like we are in a similar boat. How are you coping? I was diagnosed with All with Phil in April this yr. I am currently half way through my chemo blocks and so far it’s been ok. I was told yesterday that my livery markers are raised (I was due to have a lumber puncture on on which didn’t go ahead due to this) not sure what’s happening but they are checking my blood clotting.
Will you be having a bone marrow transplant? I have to and this is prob in Aug/Sept. I am feeling apprehensive about this as have read some horror stories. I am also anxious about being away from my family for so long. Oh well, it is what is it.
Would love to hear how you are doing
Summertime x

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Hi @Summertime, it is only natural to feel anxious all medical procedures are scary. Perhaps the internet can be a double edged sword !!!
I believe America can approach blood cancer treatments a bit differently to the UK sometimes and I do not do graphic.
That is brilliant news that a match has been found for you.
Don’t forget you will not be going through treatment alone and that we are there to support you.
Take care and have the odd treats.

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Thank you Erica, not sure how I make a new post. I have only worked out how to reply so far!

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Hi @Summertime, I also struggle with all technology.
I will copy this to @Alice_BloodCancerUK and @Bav.BloodCancerUK with the hope they can help you.

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Hi @Summertime, hope you’re doing okay - please do get in touch with our support line if there’s anything you want to talk through with us, such as stem cell transplants. We have lots of general information around this if it might be helpful? (Or feel free to send us an email at support@bloodcancer.org.uk).

To create a new post on a thread, just go to the end of the page of the thread you want to post in and there should be a red button that says ‘add comment’.
If you want to start a completely new thread, just go to the homepage and there should be a grey button on the right saying ‘add topic’. (This might be helpful : Guide to getting started) :slight_smile:

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Hello, how are you doing? . Sorry I’m still getting to grips with this forum. Lovely to hear how you are doing.

I’m half way through my first phase of treatment and currently an inpatient. Being away from home has been so hard. I miss my children so much. I’ve been here for 3 weeks so far.

I had my first puncture yesterday and have chemotherapy again today. I have that pegylated asparaginase on Sunday which I am nervous about. I couldn’t have the first one as my liver was messed up due to some medication but it’s a lot better now so I can this second dose.

They are checking my siblings currently for a match for a donor but have not told me if I’ll need one yet. I guess that happens once first treatment ends?

I saw you have transplant August /September. Wishing all the best with it. It is so strange not knowing what exactly is going to happen-when etc. I’m too trying to be positive and love hearing positive stories. I saw bits on fb that made me feel worse so try not to look.

How are feeling? Are you an outpatient on your second round of treatment.

Sorry to ask questions.

Take care of yourself and wishing you lots of luck with the transplant xxxxx

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Hi @Northernsmito26, it must be so tough for you being in hospital, having treatment and missing your children so much.
It must be scary being on this unknown roller coaster speaking this weird language.
Perhaps try and stop searching the internet and just stick to reputable sources of information !!!
We are here for you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Thanks for supporting others on this site and it is fine to ask questions.
Pleadse keep posting what is going on for you and take care of yourself.

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Hi, yes I am an outpatient currently. I finish second block tomorrow then wait for levels to come up before starting next block. Next block I have 2 inpatient stays and then I should be ready for transplant. I don’t have any siblings so I need a donor.
What hosp are you in?
Are you having a transplant?
I bet it’s hard being inpatient, can you have visitors?
Xxx

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Hi!

How are you feeling? I was very much similar to you at diagnosis, admitted to hospital and my world changed. I know how isolating being in hospital can be and it must be even more difficult being away from your children, you are doing brilliantly so far.

I know it’s something everybody says but the key really is to be positive. I found that that doesn’t mean you can’t have moment where you are upset or emotional because we all have them. It’s just means try not to let those moments rule your day. Really do lean on your family and friends (and of course the community here). A lot of the time your family and friends will feel a little bit useless at the moment so you talking to them will actually help you both.

The blood cancer help line here is really good, I did use it a few times whilst an inpatient when I found myself getting very emotional. Remember that is always there for you! The agents on the other end of the line were always so kind and understanding, it really helped.

I found some family members and friends who were just willing to sit on facetime with me sometimes watching TV ect. Just so I didn’t feel alone, we didn’t necessarily have to talk about anything important. Whilst I don’t have kids I have young cousins who I used to babysit a lot and missed, depending on their age you can watch a movie with them over facetime, that always cheered me up.

Don’t worry too much about getting the peg asparaginase (easier said than done I know) your team will be monitoring you closely and wouldn’t give it to you unless it would benefit you. Always speak to your team about any concerns you have, they really do prefer it that way. I am terrible for not asking questions because I feel like I’m inconveniencing them (I really should know better I work in healthcare) but your mind will always be more at ease after asking them.

I’m not sure if things will work differently for us (do you know what treatment protocol you are on?) But for me they did a bone marrow biopsy after induction 1 to see if I was in remission then another after induction 2. This one was sent of to London and they used the results of that one and the genetics of my leukaemia to determine if I needed a transplant or just chemotherapy. My second one came back inconclusive but they have decided to go ahead with just chemotherapy anyways (although I get another biopsy in 3 weeks) and I hopefully start maintenance in about 5 weeks. So a transplant isn’t always a guaranteed route.

That being said I have spoke to a few people who have had transplant and heard positive stories. It by no means sounds like a walk on the park (just like chemo) but with todays medicine and level of expertise of doctors and nurses they are well prepared for any complications that may arise. Have you tried the MacMillan leukaemia group? It’s a lot like this forum and there are a few positive transplant and chemotherapy stories on there. Well worth a look. Blood cancer UK also has leaflets about transplants if you wanted to look at them now although maybe it’s a good idea to wait untill you know?

I really wanted to be an outpatient for induction 2 however my team really recommended being an inpatient as induction 2 (on my protocol UKALL14) was slightly more intensive with chemo almost every day. Whilst I didn’t really feel any worse from it that induction 1 I was a lot more tired. I know others that have started it as outpatients and become inpatients due to fatigue. So I suppose it can be done both ways depending on your hospital/team but it’s something to discuss with your team and really consider. Right now though focus on making it through this cycle or believe me you wil drive yourself mad!!

If you are interested as well as making good use of this forum there is a charity called trekstock for people in their 20’s and 30’s, you could give them a quick Google. They also have a Facebook page where you can ask others questions who also have similar experiences. They also have online yoga/Pilates classes and recordings on YouTube if you’re looking for something to do when your bored in hospital!!!

Let me know of you have any questions or just want to talk or want any suggestions.

Hope you are feeling well and everything goes ok for you!

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Hello - sorry I am rubbish at finding my old messages on this forum. Thank you so much for your advice.
I am currently at home for a 3 week break, had my biopsy and will be starting my next phase on the 26th. It is lovely to be at home!
My protocol is the same as your one next UKALL14. Just having a look at it this evening and it does seem intense. I am at St Bartholomews in London but they want me to stay in their hostel for it rather than be a full inpatient this time. I’m hoping I can go home for a few days to see the kids before my levels drop and I will have to be in isolation.
I will see the doctors next week to find out my results from biopsy and more what happens next next week.

I am a bit emotional at the moment but trying to enjoy every moment with the children. My hair is starting to fall out now so that’s probably getting to me.

I have been advised to get my second covid vaccine now, in between chemotherapy but I’m not sure if I want it. I was really ill after the first one… I don’t know, feel a bit unsure. No one seems to be able to give me a definite answer. Any advice.

Thank you for giving me details of support groups and ideas to keep me busy. I’m going to try and exercise next week as I exercised a lot before I got ill so would like to buold up my strength a bit before the next chemo.

Summertime I hope you’re keeping well and treatment is going well. Do think about you and how you’re getting on xxx

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Just realised I can reply to you like this!
Hope you w are you doing? Been thinking of you.
Currently home after my first block - will find out the results of my bone marrow next week and start second block on the 26th at St Bartholomews.
Do you know any more about your transplant? I do not know yet if I’ll need one.
Hope you’re keeping well xxxx

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Hi,sorry I managed to log myself out so hadn’t seen your messages.
Where are you at now? It must be so hard having children at home and being away from them. Mine are all grown and left home. But I still miss them and my grandchildren having to isolate and be so careful when levels are flat.
I am on a break atm waiting for platelets to rise before I start next block. This will be 4/5 nights in hosp methotrexate.
Transplant is planned for Sept but I need an update from consultant.
Keep yr chin up xxx

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Gosh - you have so much going on. I feel overwhelmed for you just reading about your journey! Building your strength is do important - make sure you have some relaxation to. It’s really hard with the vaccine isn’t it as nobody really knows. I wonder if the support line could help? Please take care of yourself. Sending lots of love and discuss wishes.

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Hi Everyone
I’m not sure who I am replying too so this is to you all who have messaged me.
I think I’m a bit older than some of you, I’m 57. I have 3 children all grown and with their own families but we are very close.
I have 3 grandchildren and another due Oct. I miss seeing them so much.
I am on UKALL14 protocol. About to go into block 3 with involves staying in hosp for 3/4 nights having methotrexate. Apparently it is very toxic to organs so they run fluids along side it to flush it out. I then have a few weeks to recover then have another week of it. I should hopefully be finished treatment by mid/end August…
I was told from diagnosis that they recommend a transplant as I am also Philadelphia positive.
I am currently being cared for my Nuffield hosp in Cambridge but will move to Addenbrookes for transplant.

Good luck to you all xxx

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Hi @Summertime I am 71yrs old and I was diagnosed 17 yrs ago, so there are no age barriers here.
You must really miss your children and grandchildren, family and friends are priceless.
You have a hospital stay coming up and methotrexate, my husband is also on that for his rheumatoid arthritis.
It sounds as if your treatment is under 2 very good hospitals.
Well if you need to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk and please do keep posting how you are and look after yourself.

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Hi @Summertime and @Northernsmito26. Just wondered how you were both doing?

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@Northernsmito26 @praxedes
How are you both doing? I have been on a different post ‘awaiting stem cell transplant’ might be worth a look.
I have finished chemo now and waiting for date to go into Addenbrookes for transplant.
Still being so careful about who I see, miss my girls and grandchildren so much.
Think of you often and wonder how you are getting on xx

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I can imagine you have to be really careful at the moment. Must be so hard missing family. I really hope you get to see them soon X

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Thanks @Nichola75, it’s 2 of my girls bday on wed ( only I could have 2 children born on the same day but 4 yrs apart!), I really want to see them both. Hoping the weather is good so then maybe we could meet outside :crossed_fingers::crossed_fingers:

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