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?
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,
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,
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.
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@example.com. 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,