Welcome to the forum
A warm welcome to everyone who has recently joined the Patients & Families Forum.
Our forum is a place where stem cell transplant recipients and family members can discuss anything and everything to do with transplant and recovery.
It's fantastic to have you here with us.
Take a look at what other forum members are talking about, and as soon as you've registered you can join in the discussion.
Forum members come from all over the UK and have a wide range of personal experience of transplant, so we're sure you'll find the discussions here interesting and useful.
The forum overseen by Anthony Nolan's Patient Services team including our Lead Nurse Rachel, and our Online Community Champions - our incredible patient volunteers who kindly share their own experiences and help keep the discussion going.
If you need further information about your own transplant or recovery, we recommend you keep in regular contact your own healthcare team.
And don't forget - we can give you general transplant information on our helpline (0303 303 0303) from 9am-5pm Mon-Fri or you can email us at [email protected]
All the best,
Tom
Senior Patient Services & Information Manager
Comments
Hello Tom thankyou for the past very useful for new members.
I wanted to take this oppotunity to introduce myself.
My name is Michelle and I am one of thr Online Community Champions Tom mentioned. I had a stem cell transplant in 2019 and now 2 years post I am doing well.
I had a rough journey with my first transplant failing, GVHD and a second SCT in may of 2019. I had a 7 month stay in hospital and also fought significant mental health problems as a consequence to all my treatment.
Every ones story is unique to them and it is a journey. We are all here to support one another through this and offer reassurance or advise/tips on dealing with hurdles through your journeys
The entire team are very helpful and supportive.
Feel free to start any conversations when the time or opportunity feels right.
Best,
Michelle
Hello my name is Sarah and I have myelofibrosis and have been advised that bone marrow transplant is my best treatment option due to high risk factors of developing leukaemia. I live with my 15 year old son whose best friend of 12 years died from leukaemia post stem cell transplant. I am extremely anxious about the whole process before and after and how it will also affect my young son. Any advice from any members pre or post transplant would be greatly received. Many thanks.
Hello Sarah
My name is Michelle and I am one of the Online Community Champions and Allo Stem Cell recipient for lymphoma and Histiocytosis.
Firstly, you will discover the terms Bone Marrow Transplant and Stem Cell transplant are used interchangeably.
I had my transplant in 2019 and although it was an incredibly challenging time before and after. With the expert care of the bone marrow transplant teams and improved science/treatments, success rates have increased.
I advise people facing a transplant to list all concerns, questions, and challenges you may face down on a piece of paper and share these with the Dr's and nurses you are engaging with.
Your anxiety is completely valid and expected. We all feel this way, especially when you have children. I empathise with your son having lost a friend to leukemia so young and I appreciate how difficult the journey your facing must be, knowing your son has had this experience.
The bone marrow transplant for your myeloidfibrosis sounds like a preventative to ensure that leukemia doesn't develop, which sounds positive. I can appreciate and understand it is hard to wrap your head around, to have an extensive procedure to treat something that hasn't yet occurred, but It sounds like your team feel it is in your best interest.
Leading up to my transplant I was very unwell and the transplant had been my last hope. My team were very good at explaining things to me (multiple times) and provided fantastic emotional support.
I sought support from MacMillan and Anthony Nolan, who have a wealth of booklets to inform you on what to expect in a friendly and easy to read manner. They are accessible to young people too so they may be a resource for you when speaking with your son.
Prior to transplant the best thing I found invaluable was maintaining my mental health support, support network And considering my financial situation.
The nurses here visit the platform too and can also advise around specific areas but the things that will happen are;
- preconditioning therapy which involves chemotherapy sometimes with radiotherapy to diminish your immune system ready for the new Stem cells. Which requires you to be in hospital for approximately a week prior to the day you receive the cells
- day 0 is the day you have the Stem cells infused via an IV
- then you receive various medications to support the grafting of the Stem cells and support your body.
- some people stay a minimum of 3 to 6 weeks others stay abit longer.
- your team and ward nurses will keep a very close eye on you during this period of being an inpatient where you will be in isolation due to the vulnerability of your immune system.
- you may loose some or all of your hair, speaking with your team about this is ideal if your worried about it.
It is a daunting treatment to face and I strongly recommend speaking with as many people as you can for support or reach out to Anthony Nolan Emotional Support telephone service.
https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support
Best wishes,
Michelle
Thank you Michelle for your advice - I think I will write down some questions ahead of my addenbrookes appointment. I will look at the booklets that may help my son too.
Thank you so much x
Hi Sarah and welcome to the forum. Like Michelle I'm an online community champion here and had a transplant in 2013 for Leukaemia. I'm sorry to hear about your condition and that you are facing a transplant. We're here to support you through that and there are many transplant patients and relatives here on the forum that can provide insight to what you are going through.
There is no doubt that a stem cell transplant is a very daunting prospect, but I guess in your case much of your anxiety will be around your sons feelings. I expect that he will be frightened that the same will happen to you as happened to his friend? Have you discussed your need for a transplant with him so far? How has he reacted? I know it will be a difficult conversation but speaking to him about his concerns may help.
Losing patients post transplant is certainly not the norm and most of us do go on to make a full recovery afterwards, as many of us here on the forum can testify. There are still sadly those that don't make it but this is increasingly a very small minority. The circumstances between your sons friends illness and your own are different which may help your son understand you are not the same. The transplant process is the same, but the starting point is probably quite different. We are all unique and our experiences of transplants vary from person to person, so some people will have a rough ride whilst others have a very smooth ride. Hopefully yours will be the latter and you can return quickly to normal life.
Michelle has described a lot of the practical aspects of the transplant so I won't repeat those, but the most important thing is that you have support for you and your son, particularly when you are in hospital, on both a practical and emotional level. I'm hoping you have a good support network of family and friends to help out with both, and there are additional resources that you can get through your healthcare team or through Anthony Nolan and others in terms of emotional support. It's important to look after your mind as much as your body at this time as that will help you get through the physical side and aid your recovery. We will always be here on the forum, but don't be afraid to ask for support from your care team, or to contact the Anthony Nolan support team at any time. We're all here to help.
I hope this helps and wish you all the best for your treatment. Please keep us updated and feel free to ask any questions you like.
Best wishes,
Steve
Thank you so much Steve - I feel supported on this forum and feel I have a place to go with any anxieties. It is good to hear that post transplant most patients recover well as the 2 people I personally know have both died post transplant and were younger than me. It makes me anxious about having transplant in the first place but my risk factors are high so dont really see there is any better alternative.
Many thanks
Hi Sarah,
I'm Claire from the Patient Services team at Anthony Nolan. I'm so glad that you have found our Patient & Families Forum, and chatted with both Michelle and Steve. The Forum is a friendly and welcoming community with a wide range of personal experience and insight.
You can access our leaflets online or order them in the post - these might help you to talk through things with your son:
https://www.anthonynolan.org/patients-and-families/order-or-download-publications
You might also find some helpful resources and kits to support your son on the Fruitfly Collective website: https://fruitflycollective.com/
Feel free to call our helpline on 0303 303 0303 (Mon-Fri; 9-5) or email us at [email protected] if we can help any further. As Michelle says, you might find that support from our Telephone Emotional Support Service is beneficial to you at this time - if you would like to find out more or be referred, please do get in touch.
I hope this helps.
All the best,
Claire
Hi thank you for all your replies, they are much appreciated and are helping me navigate my way around this.
Am I right in thinking you can be in hospital anything from 3-6 weeks for the transplant then spend 100 days quarantine at home, with frequent trips back to Addenbrookes (transplant hospital) about 3 times a week initially ?
My son who lives nearer to Addenbrookes has kindly said I could quarantine at his home as himself and my other sons are closer to me there and could take me to my follow up appointments. They live in Essex and I live in Suffolk - would this be an issue ? Do I need to have much care from my local haematology team in Suffolk at this point in time or is it all at Addenbrookes?
I have my appointment at Addenbrookes next month - I will have questions to ask - is there any 'must know' questions I could be asking please ?
Thank you x
Hi Sarah
I am glad to hear the forum has proved helpful.
Yes you are correct, 3 to 6 weeks in hospital. Everyone's situation is unique and this will vary and time isolating/quarantining at home will be approximately 100 days.
You will also return to the hospital where you had the transplant frequently, again this varies but it will be approximately 3 times a week in the early stages then reduce over time providing your engraftment goes well.
You will be sent home with everything you need and on returning to hospital for check ups you will be able to collect any additional medications or supportive care you require.
Your care in the early stages and up to the 100 day milestone will be handled by Addenbrookes as they are the team you are under for the Stem Cell Transplant, so staying with your son would be beenficial.
Your team will be keen to see you have a good level of post treatment/hospital support and easy access to the department at Addenbrookes.
It sounds like your plan and sons support will be perfect for you during this time. Slowly but surely you may return to being under you Haematology team in Suffolk.
I personally have not returned to my Haemotology team and remain being observed under the transplant team. I had my transplant in 2019 and my journey meant I actually stayed in hospital past my 100 days but after discharge I returned twice weekly for roughly 6 weeks then that slowly decreased to once a week and then every other week and so on.
I asked lots of questions around food and diet. You will be neutrophil for a period of time during conditioning therapy and a while after engagement. Knowing what you can and can't eat will be beneficial. For example when you open a packet of biscuits you can't keep them open to the air and still consume them the next day. So having some awareness maybe helpful especially if you are a foodie like I was 😉
Best wishes
Michelle
Hi Sarah,
I hope all goes well with your Addenbrokes appointment.
As well as Michelle's advice, we have a great page on our website which suggests some questions you may want to ask your team:
www.anthonynolan.org/patients-and-families/preparing-a-stem-cell-transplant/meeting-your-consultant
These are just ideas - hope you find them useful.
All the best,
Tom
Thank you Michelle x
It seems I have a lot to learn still. What does neutrophil mean before and after please
Hi Sarah,
When you receive the conditioning therapy, which is chemotherapy and/or radiotherapy (what you have is determined by your teams approach and what they feel is best for your condition).
During that conditioning therapy and for some time after your white cell count will drop to a point where your body has no white cells (aslo known as Neutrophils) to fight of infections. Which sounds scary but it isn't. It is what is required for your body to be in a position to welcome the new cells.
Whilst you have no white cells ( a period called Neutropenia) what you eat can impact the development of gastro problems. But you will be given foods appropriate and it can help to know what to avoid I.e. fresh fruit and veg. Veg needs to have been cooked, so salads won't be appropriate as they are open to the air.
As Tom has mentioned Anthony Nolan has tons of resources to read through that discuss this and many other topics that may be helpful to formulate any other questions prior to your appointment.
Hope this helps
Best wishes
Michelle
Thank you Michelle and Tom - I will have a look on those links suggested.
Thank you
Thank you have have applied for some information leaflets wgich I hope will answer a lot of questions. I am wondering what to expect from my addenbrookes appointment. Since my last appointment I believe they had been getting in touch with my possible unrelated donors. If one is suitable I believe Addrnbrookes need to 'reserve' the donor - how long is this reservation period and do you think I may be given a window of time for the transplant date so I can sort out logistics and care fir my son or should I have all this in place before my appointment. Although thats a bit difficult if I don't know at the moment xx
Many thanks
Hi Sarah
Pleased to hear you found some resources that you ordered. They will supply alot of useful information.
From what I understand your still in the early stages of your transplant planning. Everyone experiences timing and scheduling slightly different. This is often determined on the severity of illness, in my experience.
I was told 3 months before my original transplant date (day 0) that things where being set up for for October, 2018. This ofcourse, no matter your condition is dependent on things going smoothly.
When your team and transplant registry are happy with the status of your unrelated donor (this means applicable to donate and clear of all clinical tests I.e. free of viruses), then the date for your donor to harvest cells will be set. This date will influence when you go in to have the conditioning therapy.
I didn't make it to my October date due to carrying a virus. But my donor had already donated. So the cells where frozen.
My second date I found out last minute due to the urgency of the treatment going up. I was told on Christmas eve of 2018 to be in for conditioning therapy on the 28th December. Was all very quick.
Given the early stages of your transplant planning, you still have sufficient time to get the planned schedule. The team should inform you of significant dates and time frames. But if you feel you aren't getting the information you need, ask the team. They may not yet be sure as it will be dictated by the donors availability to harvest cells. Does that make sense? Feel I have rambled.
The clinical nurses that visit the forum maybe able to give a more specific answer. As my understanding is based on my experience.
Hope this provides some insight
Best wishes,
Michelle
Thank you Michelle - its quite a minefield isn't it. So you were actually 2 months later than planned. I am just thinking that if I have a say in the time frame it would be better to have the transplant as soon as my son has finished his Gcse's in June as he wont be starting college until mid September. I would rather avoid his exam times and his start of college so it has the least impact on him. Its just me and my son at home but obviously will follow what the transplant team feel is medically best. So I gleen from this everything could be in place and something happens last minute to throw it out , so will need back up plans in place too ?
Hi Sarah
It's always ideal to have a back up plan. I can fully appreciate wanting to have a plan that impacts your son in the least possible way, as he is in his vital years of education.
There are variables that can change any transplant plans from viruses to changes in circumstances for the donor but your team will keep you up to date.
There are solutions like cyrofreezing stem cells to enable flexibility around when you receive the cells. Providing there is a decreased urgency to your disease status, you may be able to arrange it around life circumstances. However, it's best to be prepared for the fact that the team will have a very deep understanding of your condition and may have an idea on timings.
I advise you to ask your team how urgently they want you to have the procedure, what are their thoughts on waiting? Both important questions in your case. Having a good conversation about where they are currently at, in regards to the donor and plans for them harvesting the cells.
Are your team still sifting through potential donors or has one been identified this may give you a better sense of where the team is at?
Best wishes
Michelle
My last appointment in October I was told there were 7 donors who were a 10/10 match and that Addenbrookes would be following them up so that they had a donor in place to tell me at my appointment in March. I had a bone marrow biopsy in December and Addenbrookes should have those results including the dna results for my 'risk' factors. I am expecting a lot of groundwork may have been going on in preparation for my transplant. In October Addwnbrookes told me they would be looking to transplant in 2022.
It is amazing you had so many 10/10 matches.
There is alot of behind the scenes stuff for Addenbrookes to do including alot of blood work of the donors who have shortlisted. The donors have to have blood tests to ensure that they are virus and infection free, but also to see if they have been exposed to certain infections or viruses such as CMV ( Cytomegalovirus).
Addenbrookes are more than likely working tirelessly to ensure they have a good sturdy match and that all blood work is effectively completed. There is alot of work to ensure the logistics are precise and that any variables from a clinical perspective, donors and yours are prepared for. So, when they feel this is certain. They will then discuss with you about how the Stem cell harvesting will coincide with you going in.
When I went through all of my processes it often felt like nothing was happening or that it was never going to happen. It wasn't until I sat with my specialist nurse at a time when I was extremely vulnerable and told them I felt like nothing was happening as I had not been given a date. They spent a very long time ensuring I knew everything that had been happening up-to-date, alot of it is paper work to seek funding (it's complex), checking and double checking, negotiating logistics with time frames and planning staffing, machines, tests, beds, and ensuring your health is up to scratch to undergo the procedure.
After I understood what happened behind the scenes I was able to get a better sense of why it felt like it took forever. In actually fact it wasn't forever it was 3 months from start to finish. Being ill and anticipating such a huge monumental procedure can change our perceptions of time.
I knew for a year that I needed a stem cell transplant but initially there was no rush then it got to September of 2018 and things started to full into place. I spent alot of that year asking alot of questions and sometimes repeatedly.
There are great YouTube videos on Anthony Nolans page about the process for a donor and other patients experience.
I hope the insight and information helps.
Please continue to reach out as there are lots of other people here on the forum that could add some very valuable information to your queries.
You can also seek additional and more specific support from Anthony Nolans emotional support team
https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support
[email protected]
Best wishes
Michelle
Thank you so much Michelle
Hi I understand that I will need a dental check up - I cannot access a dentist and its not for want of trying and trying and trying. I moved here in 2020 and havent been able to get on anyone's books. I am sure I read somewhere that the hospital or trust could sort this for me ? Is that the case ?
Thank you
Hi Sarah
I haven't heard of this as a major prior requirement or advisory pre Stem cell transplant. Each hospital or team may have different suggestions around optimum health prior to the procedure. The specialist nurses here on the forum may have some information.
I didn't have any dental check ups before hand. None of my team mentioned doing so either.
This maybe another good question for your team also.
Hope this helps.
Best wishes
Michelle
Hi Sarah, like Michelle I didn't have a dental checkup immediately before my treatment and hadn't had on for some time beforehand. In reality I didn't have time as I was admitted to start chemotherapy within a week of being diagnosed, but I wasn't asked about it at any point.
I think the reason will be because you will probably not be able to have treatment for some time after your transplant due to the risk of infection, so it's probably just a precaution. If you don't have any problems with your teeth and look after them the likelihood is that you'll be OK.
Hope that helps,
Steve
Hi Sarah,
You can find out more about practical steps you can take to help prepare for transplant here: https://www.anthonynolan.org/patients-and-families/preparing-a-stem-cell-transplant/medical-appointments-and-planning-ahead. Let us know if you have any questions about this information.
I recommend that you speak with your medical team about the dentist, as they will usually sort this out for you.
If you would like to have a chat with us in the Patient Services team, please feel free to get in touch via the Helpline (0303 303 0303, Mon-Fri, 9-5) or email ([email protected]).
All the best,
Claire (Patient Services team)
Hello
I have my addenbrookes pre transplant appointment on Thursday where I will discover if my non related matches are a possible donor and my latest bone marrow dna cells testing. I was told last year I would need stem cell transplant this year and I am extremely anxious as I feel quite well in myself. Any tips please
Hi Sarah,
I hope all goes well with your pre-transplant appointment on Thursday. I seem to remember from my own pre-transplant appointment I went through a number of tests to make sure I was fit for the transplant. The consultants also described the process of the transplant with some indications of what to expect and what might happen.
It's good that you are feeling well in yourself and you will probably wonder whether it is worth going through with the transplant if you don't feel ill. The transplant is probably needed to reduce the risk of your illness returning, even if you might be in remission at the moment. I was in remission after my first month of chemotherapy but still had two more months of chemotherapy afterwards which were increasingly harsher. I was considered to be of high risk of my Leukaemia returning which is why transplant was always the goal right from the outset.
Make a list of the things you are anxious about and discuss them with your clinician during your appointment. They will hopefully put your mind at rest.
There's no doubt that a stem cell transplant is a big undertaking, but for that reason it wouldn't be done if it wasn't necessary so there must be a reason your medical team think you will benefit from it.
Please let us know how your appointment goes and ask us for any support you need in the lead up to, during, and after your transplant. We're here to help and we've all either gone through transplants or going through the process at the moment so we understand your feelings.
All the best,
Steve
Thank you Steve
Hi
I had my addenbrookes appointment - I was expecting to be given a time frame however the consultant said even though my molecular results showed another mutation in my cells my bloods were stable in January and today and as I am fairly well in myself he is of the mind to watch and wait for a little bit. He is referring my case to a panel meeting with myelofibrosis specialist team, local team and himself to discuss way forward. He said as he cant guarantee I would be as well as I am now after the transplant, the fact its only 50% successful for myelofibrosis and 20% mortality rate, his decision was about quality of life and he didn't want to do transplant too soon and impact my quality of life. I still need the transplant and I am mindful of the window when I am well enough to undertake transplant. I am seeing my local team next week and feel its appropriate to ask to have more regular blood tests say every 4 weeks as apparently my condition could quickly change.
I am pleased in part with this decision but worried I may miss the 'window' and worried about undergoing transplant with 50% success rate and coming through it with more problems than I started with.
Could I ask what your thoughts are please? I am a little perplexed x
Thank you x
Hi Sarah,
Thanks for the update on your appointment. It sounds like it was quite positive and perhaps the news that you don't need a transplant yet is good news. I know it means regular blood tests to keep an eye on things, and if something changes at least they are prepared top progress to transplant.
You said previously that you feel well in yourself and that is possibly part of the reason for the decision. As I mentioned before, a stem cell transplant is a hard process to go through so they probably don't want to put you through it for now if your current quality of life is good. As you note they will monitor you and if anything changes they can adapt their plans. likewise if you notice any changes in your health you can no doubt contact them in return.
Steve