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Is it a scary as it seems to me at the min?
Hi there,
I have been diagnosed with CLL since late 2013 and I was on watch and wait till easter last year. I completed 6 months of chemo FCR which finished sept 2015. October I was told that itsall calmed down now and thatI was in remission.
Then lastmonth I noticed my lymph glands had started to swell and had the normal biopsy to confirm that the cll has reared its ugly head again.
So soon has just devastated me.
I went to see my consultant this week who has spoken about possible options, and is referring me to kings hospital.
One option he spoke about was a bone marrow transplant. Which, hearing those words has just sent me into utter fear.
I have two children 11 and 5 and the thought of going through all this, how scary it will be for them.
My husband and all family and friends are so supportive so I am lucky in that respect. But Im frightened, scared if I'll cope, scared of what will happen to me and scared if it will work.
I do t normal let myself get like this, usually a very tough cookie but this has just knocked the wind out of me a little.
Any advice is welcome.
Thank you for reading xx
I have been diagnosed with CLL since late 2013 and I was on watch and wait till easter last year. I completed 6 months of chemo FCR which finished sept 2015. October I was told that itsall calmed down now and thatI was in remission.
Then lastmonth I noticed my lymph glands had started to swell and had the normal biopsy to confirm that the cll has reared its ugly head again.
So soon has just devastated me.
I went to see my consultant this week who has spoken about possible options, and is referring me to kings hospital.
One option he spoke about was a bone marrow transplant. Which, hearing those words has just sent me into utter fear.
I have two children 11 and 5 and the thought of going through all this, how scary it will be for them.
My husband and all family and friends are so supportive so I am lucky in that respect. But Im frightened, scared if I'll cope, scared of what will happen to me and scared if it will work.
I do t normal let myself get like this, usually a very tough cookie but this has just knocked the wind out of me a little.
Any advice is welcome.
Thank you for reading xx
Answers
Welcome to the forum and I hope you find getting in touch helpful. There are many members who have a similar condition to you so I hope they will share their experiences.
You are quite right when you say you have had a shock with the news you received and that the future appears scary. I had a stem cell transplant 4 years ago this week, I was 63 years old when I was diagnosed with bone marrow failure (MDS) and it was a massive shock. I have a grown up family with just my wife and myself at home. We were given so much information that at first we found it difficult to fully understand, but like you I had plenty of support from my family and I knew that my 3 children would look after my wife whilst I was having the treatment.
When we started with the consultations we found it a good idea to write down any questions we had to ask and also made notes of the information we were given. We were also given lots of handbooks and information sheets, we are all different and not everything that is written will apply to you. Try and stay positive and focus on getting yourself better, I'm sure you will be fine.
The Patient Experience team at Anthony Nolan are really kind and helpful, you can get in touch with them if ever you just feel like a chat or you want any information, do contact them if you need help.
Please keep in touch we are here to share our experiences and to support each other.
Best wishes
Peter
You probably do feel a little overwhelmed at the moment with the combination of the CLL returning and the prospect of a stem cell transplant possibly being the solution. Nobody here will tell you they went into the transplant without any fear and there's no doubt that it is a daunting procedure to be facing. Hopefully if you've read through the success stories in the threads on here you will see that the majority of us here have either come through the other side, or are well on the way to recovery.
Your medical team will talk you through the process in more detail and as Peter says it is worth making some notes of your concerns before you go to see them so that you can prompt yourself to ask the questions you need answering. You may want to read up a little beforehand and I would urge you to read the information that Anthony Nolan have themselves regarding the transplant process and more critically, the leaflets on what happens afterwards during recovery.
The positive way to look at the transplant is that it is likely to significantly reduce the risk of your CLL returning again afterwards, so once you are over the transplant you should be able to look forward to as near a normal life as anyone else, just as many of us here do.
There will always be a fear of complications, but even in the time since I had my transplant just over 3 years ago the matching process has improved to reduce the chances of things like Graft vs Host Disease (GvHD), so the transplant process is becoming better and more reliable all the time.
With your children it's a case of being honest with them so that they understand what you are going through and that you will be unwell for some time. I guess they have already seen you go through chemo so are used to you going into hospital for treatment and the effects it can have on you. I have twin boys who were 11 at the time and the critical thing for them was keeping their normal routine, even whilst I wasn't around so that things are as 'normal' as the can be. Your family and friends are critical for support and it sounds like you have a good support network around you who can help out and allow you to focus on recovering.
This forum will also give you opportunities to bounce your concerns off patients who are or have been in the same boat, and whilst we are all different in our experiences, we have a lot of things in common too. We are all here to support each other so please call on us here when you need to and don't hesitate to contact the Anthony Nolan team either as they are very knowledgeable and really supportive.
I hope this helps but please post your concerns as they come up and keep us up to date with your news as things develop.
All the best,
Steve
Im normally such a strong, and quite stubborn person
I was just saying, I was clearly having a down' weekend. But today I have given myself a talking too and are feeling quite positive!
I'm puting my trust in my cinsultant and I trust him massively..
My husband, mum and myself are going to write some questions down for when we go up to kings so we dont forget anything, so hopefully will get all the write answers.
Today has been a good day, and thats the way I like it. And reading your comments has been a massive help and made me realise I'm not alone.
Will keep you updated on here, this is a good way to release your thoughts too.
Its fab that there is somewhere to support and to gain support
My name is Hayley and I am the nurse specialist in the patient experience team. My role here is to offer additional advice and support to patients and families who have been affected by blood cancer and stem cell transplant. I will be working 3 days a week in the office. I also work 2 days a week at a transplant centre in London as the post transplant clinical nurse specialist and prior to that I was a transplant co-ordinator which basically means I was involved with preparing patients for their transplant and donor searches. So I have a lot of experience in meeting patients like yourself who have been given the news that they need a transplant.
Everything you have said about how you feel is very normal and an understandable reaction and asking for help, support and information is a great way to begin to cope with it. My advice would be to just focus on the meeting with the transplant team at Kings initially and writing down your questions is a good idea. You will be given lots of information so don't put pressure on yourself to understand and remember it all at once. You might feel overwhelmed with what they talk to you about and if you do, again this is very normal. The process of finding you a donor and arranging dates etc. can take several weeks so you have time to read and ask as many questions as you like. You can then decide what is important to know about now and what you can put to one side for a bit and come back to at a later date. I would recommend reading seven steps: blood and bone marrow transplantation from Bloodwise and The Little Guide for Transplant Patients from Anthony Nolan these are two excellent resource on preparing you and your family for the transplant. Your 11 year old might also benefit from some of the booklets from children Cancer and Leukaemia Group (CCLG), they have booklets on stem cell transplant aimed and written for young children so they can get a bit more of an understanding of what is going to happen in the next few months.
The most important thing to remember is you can do this, you said yourself you are a 'tough cookie' and you seem very positive, you have the support of your family and friends and the expertise of your consultant and transplant team. This forum is great for advice from patients who have been there and understand what you are experiencing and are now getting on with their lives and keep reminding yourself of that too, there are lots and lots of post transplant patients living normal lives.
If you have questions or once you have been to Kings you would like to discuss anything further please do not hesitate to get in touch.
Best Wishes
Hayley
I'm new to this Forum and having just read your posting, I thought I would respond to add some words of encouragement.
I had my transplant on 12 March 2015, and so I'm just over fourteen months post transplant having been lucky enough to have found that my twin-brother (obviously not identical as I'm his sister) was a 10/10 match and so was my donor. Like Peter I had a diagnosis of Myelodysplastic Syndrome (MDS) (with delete 5q) but as this form of the disease was considered the lower risk with only a 3% chance of it progressing to AML, it was a total shock to find out in November 2014 following a routine bone marrow biopsy that it had indeed progressed to AML and so my only curative option was a bone marrow transplant, also known as stem cell transplant.
It is inevitably an overwhelming prospect to have to face, but on the upside is the fact that you have the chance of a 'cure', and so for the sake of possibly having to sacrifice a year of your life when you will have to go through the treatment and recovery process, you will get your life back. Everyone is different as to how they react to the treatment, and how long it takes them to recover, and as much as it is natural to want to know as much as is possible about the treatment, including possible side affects, you can find yourself having information overload, so I suggest you try to be selective on what you read at this stage, and the ones suggested by Hayley seem to be spot on.
The success stories here should provide you with much encouragement, and the community seem incredibly supportive which really does help to make anyone going through this treatment to feel less isolated and alone. I gained much comfort in the early days of my diagnosis from the MDS Patient Forum as a self-help group, and I have not really ventured into the Anthony Nolan site post-transplant but I will try and visit more often as I may be able to offer some words of advice or comfort from my experience to others, but also gain advice myself if I have any concerns.
Just remember, that it is perfectly natural to have 'down' days and 'wobbles' but with the support of family, friends, fellow patients, and of course your medical team, you will get through this.
With Best Wishes
Sarah
Pleased to hear that you have made good progress since transplant and that you had a good match in your twin brother.
I find your post really interesting and it took me back to my first consultation when MDS was diagnosed and the words of my consultant, 'Peter in your case there is only one cure and that is a stem cell transplant'. That was back in early 2012 and I went on to have a transplant in May 2012, in fact this week I have just celebrated my 4th anniversary. When 'transplant' was first mentioned the process was explained to us as was the need to find a donor. Like you I had a twin, in my case a twin sister, hopes were raised but she was not a good tissue type, she was really disappointed. Anthony Nolan found me the perfect unrelated donor.
Transplant has been a success but like most patients there have been many ups and downs particularly in the early days, even now a cold takes forever to clear, but my consultant was right it was a cure. Support from relatives and loved ones is so important. I'm sure Charlie will take comfort from your experience and those of other members.
Do keep in touch and share your progress with us.
Best wishes
Peter