Introducing Our Selves!
Hello My name is Michelle.
I recently become a Community Champion here at Anthony Nolan.?
I wanted to say 'Hello' to each and every one of you and Introduce myself.
A number of years ago I was diagnosed with B Cell Non Hodgkin Lymphoma but a very quick decline lead to a complex and rare immune disease being found called Haemophagocytic Lymphohistiocytosis. I know a mouthfull right? It is often also refered to as HLH or Histio.
After a fair few rounds of chemotherapies and immune therapies. I was offered a Stem Cell transplant. I had a trialing time leading up to the start of my Stem Cell transplant and caught the common cold putting things on hold much longer than I hoped. But eventually one Christmas season I got the phone call to say I could start the conditioning therapy. I was confused but joyful. I was anxious yet excited. I was aslo experiencing other emotions that I didn't understand. But with the great support of Anthony Nolan just before and my medical team we got through the conditioning therapy and entered into My Day 0. Which felt sureal. I'm sure you can all relate!
My journey through transplant was rocky and I came face to face with many challenges. I'm hoping that with things I experienced and also learned since diagnosis all the way to today I can provide some meaningful conversation and support.
Some off my challenges where during all my treatments I struggled with insomnia, anxiety and had to adapt to many weeks and months in isolation which was tough and then there was the GVHD. I had GVHD from a few days post affecting eyes, liver, gut and skin. But that goodness it has all resovled with just some mild skin GVHD now. Which is managed.
I would love to hear from you, our fellow users here at 'The Patient and Family Forum'
I know we have a few other Community Champions here new and old.
How are we all? And what is your story?
Chele,
Comments
Hi Michelle and welcome to the forum and to the Online Community Champion team!! I've been around the forum for about 6 years now and an Online Community Champion for about 5 years (I think), so it's good to have you on board.
I'm glad there's an abbreviation for your condition as that is defintely a mouthful!
I had a matched unrelated donor (MUD) transplant in January 2013 for Acute Lymphoblastic Leukaemia (ALL) and was admitted to hospital within a week of being diagnosed, so it all happened very quickly for me.
I too remember the anxiety of going into the transplant once my medical team confirmed that a donor had been found. After three months of chemotherapy I was so poorly I didn't feel ready for it but I went ahead and am still here today thankfully.
The journey for most of us is a rocky one, but it's a case of persevering and trying to forget about the bad days and enjoy the good ones, focussing all the time on getting to the end of recovery. Like you I had GvHD of the skin which I had ECP treatment for, and thankfully it hasn't affcted me since. My main challenges these days are chemo brain and a higher level of fatigue than before it all began.
Seven years later I can look back on it all as a bad memory but one that I'm proud to have come through and I'm sure like me, your experiences will help others get through their transplants.
Welcome again and I look forward to reading your posts on the forum.
All the best,
Steve
Hi Steve,
Thank you.
I feel reassured to read that my experience of on going fatigue and 'chemo brain' is across the board and a common experience. Although I am only 18 months post. Early days for me.
Wow! 7 years post. Congrats' to you! I wish you many many more 7 years.
I go through stages with skin GVHD mostly acute when the Dr's drop the Cyclosporin. Which then I get stuck in a cycle of them upping the medication to rectify the GVHD, hence the long haul with Cyclosporin. Topical steroid cremes seem to be enough for now. Which I'm thankful does the trick.
We most certainly all have a unique experience and I very much look forward to hearing from others.
All the best,
Michelle
My name is Mandy.My 37 year old daughter has aml...she was diagnosed April 22.She is currently in hospital as she had a stem cell transpant on new years eve.I feel totally lost i cannot beleive what she is having to go through and i cannot help her or visit as she is isolated.... ...Everyday she seems to have something differant ........... we find out soon if the transplant has worked.
Hi Mandy,
I'm Tom in the Patient Services team here at Anthony Nolan.
Thank you for joining the Forum. This must be an incredibly difficult time for your daughter and for your whole family. We hope all goes well with her recovery.
I'm sure other Forum members will share their experiences soon. In the meantime you might find some of the posts that are already on the Forum are insightful and helpful to you.
And if you'd like to talk to someone at any time, we're here for you. Our Helpline is available on 0303 303 0303 from 9am-5pm Mon-Fri.
Alternatively you can email us at: [email protected]. We also have a Telephone Emotional Support Service that you might find useful - if you'd like to find out more about that at any time, please don't hesitate to get in touch.
All the best,
Tom
Thankyou
Hi All
First post here - my name is Sarah and I am Mum to my beautiful daughter Danae who was diagnosed with Acute Myeloid Leukaemia at the end of April. Danae is 20 years old and was just finishing her second year at university. I brought her home and she has already had 2 rounds of chemo and is awaiting a stem cell transplant.
The donor is being sourced via Anthony Nolan (thanks guys). I am scared and have gone from being worried about her losing her hair (at the start of this) to now just wanting her to survive.
We stay positive and laugh every day. I hope all others on this journey find strength and positivity
Hi Sarah
I am Liam, the Patients and Families Manager at Anthony Nolan.
Thank you so much for joining the forum and I hope you find a supportive community here. Welcome!
I am sure you will find other forum members sharing their experience with you. But in the meantime please feel free to have a look at the threads and messages that already exist.
We also have other support services available from the Patient Services team including our Telephone Emotional Support Service you can access these services by calling 0303 303 0303 and selecting option 3 or emailing [email protected].
Sending my best wishes to you and your daughter Danae.
Liam
Thanks Liam
I have had a look around and some of the threads are quite scary if I am honest.
I have learnt not to look too far ahead so for now, I am enjoying having Danae at home on a break before we head into stem cell transplant world.
It is good to have this type of support- thanks
Sarah
Hey Sarah,
Firstly, welcome to the forum and I am so sorry to hear that Danae has been diagnosed with AML.
My name is Dan and I had my Stem Cell Transplant three years ago - funny story, it was actually on my birthday, so super easy to remember.
Anyway, it is really important to remember that all of the people going through this process are going through their own unique process. These diseases impact everyone regardless of age, race, gender etc etc and they impact everyone differently. Everyone's process is their own unique snowflake of a process, so try not to read too much into other people's stories on here - especially worth remembering that people that come to this forum are normally the people looking for help so their stories may not represent the majority of patients' experiences.
With Danae being young (I myself had my transplant on my 28th birthday) she will respond very differently to the treatment than most people, and indeed will have a different treatment plan to a lot of people.
What you will find though is that Anthony Nolan are incredibly supportive as an organisation and that the community on here are awesome too, so if you have any specific questions or fears then please don't be afraid to ask here and you will find support.
Best,
Dan
P.S. Keep up the positivity, a positive mental attitude and a laugh every now and then goes an awful long way in times like this
Hi Dan
Thanks so much for your positive response and your unique story and outcome. It was lovely to read this.
I do really like the AN website as it is so informative and easy to read and learn what is going to happen next for Danae.
We are definitely taking each day as it comes and finding something to laugh at in every day. At the moment Danae is home on a break and it is sooooooo lovely to just chill together. She even bought me a little gift *see photo. It made me laugh 😂 so much and I am thankful that her sense of humour is most definitely still intact
? Won’t let me add photo..?
I can't see the photo, but really glad to hear that you two are keeping up a good sense of humour - keep it going!
It still won’t allow me to upload. Ahh well. She bought me my very own Health Care Assistant (HCA) badge - it has my name on it and everything! 😂
Aww that is very sweet - well it sounds like you two are doing the best you can in the situation which is awesome to see
Hi Everyone
I have just joined the forum today! My journey began last April with horrible pains in my back so bad that I had to crawl out of bed to go to work. I had several Doctors diagnosis me with everything from a kidney infection to trapped nerves, eventually in June they took some bloods did an MRI and discovered I had a fractured spine and Multiple Myeloma and so it began in August and I had my SCT on Feb 2nd, I am now on maintenance taking 1tablet a day. Unfortunately I still have back pains so We are trying to get the right mix of drugs to help it’s definitely better than it was tho!!
I have been told my remission is 12-28 months was anyone else given a time??
thanks for reading and I wish everyone the best of health stay positive!
Anita x
Hi Anita
My name is Michelle I am a community champion here on the forum, and a stem cell transplant patient.
Thank you for sharing your journey with us.
Your journey to diagnosis sounds really difficult. Im so sorry you had to endure so much pain prior to getting your diagnosis.
Interms of a remission them frame I was not given a time frame but my diagnosis was different to yours.
There are many others who have had a diagnosis like yours that would be able to better inform you of this suggestion of 12 to 18 months for remission.
I would reccomend speaking to your nurse specialist about this as it is different in each case.
Please continue to reach out on the forum to get the support you need and deserve.
You can also reach out to Anthony Nolan clinical advice team to discuss this topic.
You can contact them via the patient services team on 03033030303
Best wishes
Michelle
Hi Anita, I hope you find some support here.
I'd somehow signed myself out and didn't realise, so haven't been around for a few days.
Your journey here sounds horrible. What a hero you are and you're still fighting. They've told me being positive increases chances of remission. Keep at it.
All the best
Helen
Hi Anita, I have just joined the forum. My diagnosis is very similar to yours, I had a bad back and pain down my right leg, doctor diagnosed trapped nerves and sent me physio, after about 4 months physio finally referred me for mri where they found a fracture in my spine with a growth behind it Right on the bottom of my spinal cord I was admitted to King's College and diagnosed with multiple myeloma in Oct 22. Radiotherapy and 4 rounds of chemo, stem cell transplant on 11th may, I am +100 today. 2 more rounds on chemo which finish on Thursday and I have bone marrow biopsy that day too! Get my results on 8th September and then onto maintainnace.
Apart from back pain still I am feeling well. Glad to here that you are better than it was at beginning, keep strong and positive. Sending love.
Hi Ang13
That sounds like a difficult journey.
Stay strong. You're doing well. I had my 2nd sct birthday in june. Time does pass. It's so very hard though. I hope you find suppohere.
Love
Helen