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Relapsed AML
Hello, I was wondering if there was anyone in a similar position?? I was diagnosed with AML last year and had four round of chemotherapy and have been in remission up until now. I have been told I have relapsed and now need a transplant. I already have a donor who is prepping but I am absolutely terrified about the whole thing and the consultant scared me to death! Thanks
Comments
Hi there and thanks for your post.
My name is Steve and I'm one of the Online Community Champions on the forum and had a transplant myself in 2013 for ALL. I'm sorry to hear that you've relapsed and are now facing the propects of a transplant. It is a big shock being told that you need a transplant and those of us on the forum, that have had, or are going through transplants know just how you are feeling right now. In my own case as I was at a high risk of relapse, a transplant was suggested right from the start of my treatment and like you I was terrified.
The positive thing is that you have a donor and that preparations are underway for your transplant. Nobody here will tell you it is an easy process to go through, but stem cell transplants are being carried out every day and are a well practiced procedure. Success rates are very high compared to some years ago and are improving all the time. A successful transplant offers the opportunity to prevent your disease coming back.
We are all unique though and react in different ways to transplants so that is where the routine takes a little more work. For some people the transplants can be straightforward and recovery relatively quick, for others the recovery can be slower and there can be hiccups along the way.
I know the prospect of the transplant can be really daunting and as you say, your consultant has scared you to death, but they will be acting in your best interest and must think that a stem cell transplant is the best solution in your case to prevent your AML returning. The key thing is to speak to your medical team to understand what is planned in your particular case, as everyone will be slightly different. They will be able to tell you about the treatment you will have leading up to the transplant, the transplant itself, what you can expect during your recovery, and any potential risks you might face during transplant and recovery.
There is also a wealth of information on the Anthony Nolan website that will help you understand the process you are about the go through. The 'For patients and families' link at the top of this page will take you to a variety of guides that will describe the transplant and recovery process and you can also get support and contact the Anthony Nolan Patient and Families team directly. The Anthony Nolan team are extremely experienced and knowledgable and they understand both the transplant process and the needs of patients and their families outside the clinical setting. Please don't be afraid to contact them directly to get specialist advice that will hopefully support and expand on the advice your medical team are giving you.
It's also worth having a look through the information and guides and making a list of questions or concerns that you might have that you can discuss with your medical team, and if necessary with the Anthony Nolan team. You probably feel like it's a whirlwind at the moment being thrown into the transplant, so having those notes will help you structure discussions with your medical team to help you get the assurances you need.
Like me, our other Online Community Champions are also transplant patients and we, the Anthony Nolan team, and the other patients will help you through your transplant and hopefully reassure you that what you are going through is not unique and you are not alone. We all have a variety of experiences and if something concerns you, post about it here and invariably someone has had the same experience.
I hope this helps give you some reassurance and whilst it won't remove your fear of going into transplant, you know that we are all here to help you get through it and come out the other side.
Best wishes,
Steve
Hello Jesjesica1
My name is Michelle and like Steve, an online community champion. I am also a Stem cell recipient. Having had my transplant in 2019.
What you describe was similar to my story. Relapsing after 3 months of treatment. I was introduced to the prospect of a stem cell transplant at that point but with no immediate plans due to being so unwell. I had to know the ins and outs of ehat was going to happen. I thrive on information. This hrlped me deal with my anxieties and fears.
It is a scary road to be put on but Anthony Nolan has lots of resources that are very informative for both you and family/friends.
I ordered almost all of the leaflets that are available and shared them with those closest to me so they knew what to expect.
My donor was available to prep and harvest cells in the October of 2018 but i didnt get the cells until 2019.
As Steve mentions every ones journey is unique to them. My case was complex for many reasons but in alot of cases people do quite well.
It is great to have your donor all ready prepping although it must feel frightfuly immenant.Taking one hurdle at a time is useful. Dealing with this unsettling news and coming to terms with your next steps.
It isn't an easy journey but being informed, asking questions, getting your self as well as you can be physical and emotionaly, sharing concerns or anxieties with those around you and your team. Work through any uncertanties with your team will help them to support you when you an inpatient.
Make a list of things you want to take in with you will help you distract from any difficult things but also prepare you psychologicaly for going in for the transplant.
If there is any one big tip i could share is, every question/thought/concern that enters your mind, write it down, take it to clinic visits, check those things off, and ensure you are as comfortable and informed as you can be.
Definately seek advise or emotional support from Anthony Nolan's helpline. It is invalueable and can help with your mental health prior, during and after. Anthony Nolan are there throughout.
Best wishes,
Michelle
Thank you to you both! It is all moving so fast I’m starting chemotherapy tablets tomorrow to get into remission. I am so terrified of the side effects! I have read so many horror stories about it all. I have been looking on the website and resources which are keeping me informed I think I will try the helpline as well !
Hi Jesjesica1
Our bodies are weird yet wonderful things. We can't predict how our body will respond but having the right support and knowledge will help prepare you.
Speak to your team (and Anthony Nolan Specialist Nurses) about those side effects both conditioning chemo, transplant and there after. Maybe ask your team about the ones you are most concerned about (i know all of them are scary) and how they are managed i.e. nausea what will they offer you, ask about managing appetite, seeking advise before hand can settle the nerves a little.
I asked alot about pain management, what was first line, second line and what happens in the worst case scenerio. I also had a plan around emotional well being i.e. tips on keeping distracted and in contact with friends and family.
If there is anything specific you want insight on we are here to support you too.
If you are a into list writting or journal writting this can help a lot.
Best wishes,
Michelle
Hi Jess
I'm am very sorry and can understand your fear. I have non hodgkins and have relapsed 3 times after 1st chemo few years ago. I had my transplant last August after a clinical trial got me back into remission. I think having donor transplant is a chance at a fresh start.
I was scared too at the time after speaking to doctor. They have to cover everything. If it helps I record conversation on my phone which helps as can't always take it in at time. It is really good they have matched you.
My journey hasn't been easy but I did it. The hospital will support you through every step prior during and after. You can also access support through maggies Centre. To help me prepare I took online yoga class through maggies London.
There will be support here for you too. I found this forum really comforting when I got home. I hadn't looked at it before. I know it's hard try not to read the Web. Everyone experience is unique and often information is not up to date. If you have any questions please feel free to ask. I am nine months on and things are.looking good.
Take care
Laura x
Thank you everyone for your kind comments your all so supportive. It’s good to know there’s so many other people that have got through it and are doing so well! X
Hi Jesjesica1
I am one of the other Online Community Champions like Michelle and Steve. I am so sorry to hear of your troubles and the thought of a stem cell transplant. I also have had relapses but for Non-Hodgkin's Lymphoma, one of which ended in a stem cell transplant.
I was definitely nervous about having a stem cell transplant especially when my treatment plans before were completely different.
Another thing that didn't help was my consultant also told me every single risk that could happen which also scared me to death too!!! My bit of advice is to ask a professional or your consultant if there is anything that you are unsure of because this really helped me put any worries to bed.
If you want to ask questions we are all here to help,
Cameron
Hi! Thank you for being so supportive it means a lot you read all these horror stories especially as I was on the ward last year for my first treatment and saw the rooms and everyone talked about them like it was this awful procedure to have done that scared
Me to death! I haven’t even had the chatbut I’m dreading it. Even being told I relapsed my consultant was very serious going into if this doesn’t work and that doesn’t work and all sorts! I think I’m scared about my mouth I seen a lot of posts people saying they had to have a feeding tube! I had three rounds of intensive chemo last year and my mouth was fine so I’m hopeful that’s a positive as I think I’d panic otherwise!
Hi Jess
All your concerns are valid and im sorry it is all field with so much fear for you.
In regards to your mouth, ice lollies helped me lots and i know one of the chemos during conditioning therapy, ice lollies are advised. Maintaining good oral health throughbout will help and there is plenty of oral mouth washes and gels that can be presxribed should you have a GVHD flare of the mouth. Others here can share their experience with mouth sores etc. I managed to avoid any issues with my mouth.
Also the Anthony Nolan nurses can support you with any anxieties.
Sounds as though you done well with your treatment last year.
Best wishes,
Michelle
Hi Jess,
Your consultant will have to explain all the things that could potentially happen so that you understand the risks and the potential side effects that you might encounter as you go through the process, but it's really important to remember that those risks and side effects might not ever happen. Your consultant is duty bound to tell you about them so that you are aware. It's a bit like taking paracetamol which carries an explanation of the risks on the paper leaflet in the box. People very rarely experience side effects from taking paracetamol, but the advice still has to be there.
My advice would be to try not to think about how you will cope with something if it happens, as it may not happen to you. Deal with each issue only if it arises. Your medical team will have seen all possibilities and will know how to deal with them to resolve it, and there will be patients on here who can share their experience. Everyone is unique and everyone's transplant journey will be slightly different, so try not to dwell on what has happened to others as your experience may not be the same.
As for the rooms, I know what you mean that on the face of it they can be quite daunting places. I have probably quite a unique experience because back in the late '80s I started work as an electrical design engineer and the first project I worked on was a new hospital project at Leicester Royal Infirmary. I remember working on drawings showing the bone marrow transplant unit and subsequently watching the rooms being built on site and how I felt sorry for any patients that might end up in one. At the time bone marrow transplants were much more rigorous procedures and success rates nowhere near where they are now. Patients were in total isolation and the rooms that I helped design even had hatches in the corridor wall to pass meals to the patient.
Little did I know then that I would end up being treated as a patient in one myself! The hatch was still there but was never used and the experience was nowhere near what I expected from the design work I did 30 odd years before. There was no need for total isolation and I was allowed visitors as long as they were healthy and washed hands and put an apron on before entering.
I actually spent a lot of time in the bone marrow unit, even during my early chemotherapy treatment long before my transplant. I thought of it as my own private room, almost like a hotel room, with my own TV! It gave me a lot of security knowing that the specialised clean ventilation system to the room mean that I was protected from airborne bugs and that being in my own room, rather than in a shared ward with others meant I was well protected from infection. If you think of it in a similar way it may not seem so daunting.
It sounds like you've handled the chemotherapy you've had well to date so hopefully that will continue as you move through your transplant and you will go through the process without any problems.
I hope this helps.
Steve
Thank you Michelle I know the hospital have lots of Ice lollies on tap!!!
Thank you Steve that’s so weird you found yourself back in those rooms again! I have heard the rooms are quite big and at least I won’t be moved which is good to know! Fingers crossed.
I’m struggling with the fear of relapse already how do you cope with this? Mainly I relapsed already so am terrified of relapsing again before I have even started the treatment I’m convinced because it happened once it’s going to happen again and they will run out of options x any suggestions?
Hi Jess,
I know it's hard to ignore thoughts of complications and relapse, but try not to think about it if you can. I don't know what the statistics are but relapse from transplant certainly doesn't affect everybody, and the majority of people get through their transplant without relapse.
The reason your medical team think a stem cell transplant is the way forward for you is probably because your disease has relapsed already without one. A stem cell transplant wipes out your old system and starts with a new one, so has a good chance of getting rid of your disease too. I always liken a stem cell transplant to wiping a computer with a faulty operating system clean and uploading a new version of windows!
I'm a firm believer in thinking positively and I think that helped me get through my transplant. Like you I was told about the risks associated with a transplant and it is scary, but I went into it with the mindset that those things were not going to happen to me and that I was going to get through it all and back to normal life, which I did.
I'm hoping you have a good support network of family and friends around you that will help you get through this, as we will here. With your family and friends, set yourself a goal to achieve when your transplant has been successful and you have recovered. Something special that you can do with them to celebrate that it is over and give yourself something positive to aim for. That might help you focus on that positive end goal rather than worry about the potential negatives which might never happen. And celebrate the little milestones along the way, such as having the cells infused, the first signs of your blood counts growing, going home from hospital, the 100 day mark, immunosuppression being reduced, and so on, but try not to dwell on any minor setbacks along the way.
Stay positive and you will get through this and be able to look back on it all in the future.
All the best,
Steve
Hi Steve thank you I feel much better now. I think it’s all about putting things into perspective. A bit like the chemo last year I was so scared but the side effects weren’t half as bad as what I imagined!!! That’s a good way to describe it I was having a transfusion earlier and talking to a guy who put it exactly the same as you ! My close ones are very supportive I am very lucky! This time round I have a journal so each day I can write everything down and how it has been etc I think I will find it useful! I think in my mind thinking negatively is protecting myself instead of feeling positive and getting bad news -not a great coping strategy!
Thank you again for your advice this thread has definitely put my mind as ease!
Jess
Hi Jess
Steve put it well in regards to positive mindset. I found it hard but once i was in my room on the ward, where i was very familiar with the staff and they knew me better than i knew myself at this point. Immediately i began even getting excited about have the cells on day 0. Im super nosey when it comes to procedures and wanted to know everything that was happening. I even remember saying to a friend thats it i have a chance its done!
I then looked foreard to lots of sleep and lazy days. Watching all my favpurite films. hahah.
It is great to hear that those close to you are very supportive. It helps immensley with how you cope.
When i was told that SCT would be my next step i was told i couldnt go ahead with the procedure without a support system. I live alone and family live far away from me. So i spent my time before getting friends in on what was happening, what to expect, what i would need from them during and after. I actually ended up living with 2 seperate friends on and off before. During that time talking to them about ehat would haplen and what the drs had said had helped me process everything too. It made it all alot less daunting.
Keep talking and sharing. You have done amazing reaching out to process and cope with how your feeling about it all
Best wishes
Michelle
Thanks Michelle
I’m weirdly excited to get going but have to wait until the chemotherapy tablets work first! I’m not surprised I know they like you (where I am) sometimes to go to nearby flats but you need someone with you 24/7. Had my picc line put in yesterday as was fed up with getting stabbed a million times a week xx
Hi jess,
Picc lines make a huge difference. The constant insertion of cannulas can be overwhelming and daunting for some.
It does make your addmission easier and more accessible for medications when and if needed.
We are all here to continue to support and encourage you throughout, as are the Anthony Nolan Telephone support team
Best wishes,
Michelle
Hi Jess
I was reading over everything and saw some worries I might be able to help with as well!
I also didn't want a feeding tube at all and really focused in mouthcare. Like Michelle, I also managed to avoid it. along with brushing my teeth, I also used mouth wash which really worked. Starting mouth care as early as possible really helped.
During transplant, you will get to know all the staff really well and they will always cheered me up when I was having a bad day.
Hope you are well
Cameron
Using a sensitive toothpaste without sls in will really help. I use zendium but there are others.