Hi Everyone
Let me introduce myself. Im Cameron, the other new Online Community Champion.
I was diagnosed in 2013 with Large Cell Anaplastic Non-Hodgkins Lymphoma or Lymphoma for short. I had a really long journey before I even got to transplant so I'll try make it short. Initially after being diagnosed I was given 6 rounds of chemo which put me into remission and I was sent on my way with regular check ups. Then, 9 months later, I relapsed and was given 2 years worth of low dose chemo called Vinblastine. However, this only kept the lymphoma at bay whilst I was on treatment and one month after finishing I relapsed again. This is where my transplant story begins.
I was given 5 rounds of antibody treatment to get rid of any remaining lymphoma and had a non-related donor transplant in January 2017. The only thing that went smoothly was the hour or so I recieved my donor cells. After that it was all down hill. I had GVHD which did not go away with steroids so I had this treatment called ECP. This is a process where a machine took my blood and zapped the white blood cells with UV light. I had this a couple times a week for 2/3 months. I also had every virus under the sun from norovirus to astrovirus and more! One of them even put me on gastric rest for a week.
With everything included, I spent around 3 months in hospital and havent been admitted since. I have now been in remission for 3 and a half years and have met my donor which was amazing! I also held a drive at the school with Anthon Nolan and Scottish Fire and Resuce Service where I got fellow class mates to sign up to become a donor. The day was a success with 140 people signing up to become a donor. I have just left school and am taking a gap year before starting University. I am hoping to study Medicine.
Thats is my story and hopefully it was insightful. How is everyone doing?
Comments
HI Cameron
Lovely to hear from you. It's lovely to read your story and hear that you are doing well.
I had my Stem cell transplant in 2019 after 3 and half years of treatment I'm now 18 months post and joined the Online Community Champion team last week. So welcome! It's great to have another new Online Champion on board.
I'm doing well other than the GvHD which comes and goes with the reduction of Cyclopsorin which is proving hard to get off. I was first diagnosed B cell Non-Hodgkin lymphoma and that progressed into Haemophagycytic Lymphohistiocytosis or HLH/ Hisito for short. I was treated with 3 lots of chemotherapy, Immune therapy and Biological therapy. But after 3 relapses Stem cell transplant was the only thing that could give me a better chance. I also had a tricky time after the transplant day it self. My stay in hospital was 7 months due to my CD34 failing which left me pretty unwell and I had to have a top up of stem cells. I continue with issues around chronic fatigue and pain. How do you find your energy levels? I'm in a much better place now and pleased to give back by supporting others on this forum.
Your the first person that I have come across that explains ECP so simply. Thank you for the little bit of insight with that.
Welcome aboard I done a post starting a discussion about sleep if you have anything to add it would be great to hear your views on sleep and if you have had any challenges how you have worked through them.
All the best,
Michelle
Online Community Champion
Hi Cameron,
I'm also a community champion and have been around for a while after having my transplant in January 2013, so it's good to have you on board.
I have twin sons the same age as you and your initial diagnosis was about the same time as I was diagnosed with Leukaemia. I couldn't imagine one of them having to go through the process we have so I can imagine it must have been really tough to face all the chemotherapy at your age, with the transplant so many years afterwards. I'd be interested to know how disruptive that has been to your life and school?
I had GVHD too (affecting my skin) and also had ECP, but in my case the treatment lasted two years. Thankfully it resolved the problem and I haven't had any issues since in almost five years.
Well done on your donor drive at school, that's fantastic to get so many people to sign up.
Best of luck with your studies in medicine. Do you plan to head towards Haematology by any chance?
I look forward to hearing your insight in the discussions and getting your perspective as a younger patient. Welcome to the Online Community Champions team!
All the best,
Steve
Morning Steve and Cameron.
I second what Steve says. Your increase in awareness at school was incredible. Well done!
I think it would be great also to hear how you coped as a young person?
Have a good day all,
Michelle
Community online champion
Hi Michelle!
Its great to here you are doing well.
After Transplant I found my energy levels so depleted to the extend I could only sit in a chair for half an hour or so at a time. This was the case until I could get out of isolation and start walking around the ward. Even at this, I was still getting tired after 30 seconds and would have to take a break. What I found really helped my strength in my hands and arms was actually Fidget Spinners believe it or not. I had my transplant around the time of that craze.
Even after I was released from hospital (3 months after transplant) I found it really tiring sitting in a car or sitting a table trying to raise my arms. One thing I found really helped was just trying to claim back some sense of normality whether that be seeing friends or going out.
I am still experiencing fatigue to an extent now if I do far to much in a day even though I am 3 and a half years post transplant. Hopefully that helps
The irony with the ECP is when the doctors where explaining it to me, they don't know why it works!!!!
Thanks for welcoming me to the board and I will try to give some tips about sleeping.
Many thanks,
Cameron
Hi Cameron.
I can really relate to the fatigue in the early days. I had the discussion with Steve too about fatigue later down the line. Im glad Im now part of a community that understand. I manage by pacing at the moment and actually become well aquainted with the theory i pacing task/activities.
I remember the fidget spinners funnt as I had stress **** I squeezed and actually ended up getting into Lego which helped my arm, head strength and core. I was a rag doll for months after
I had to find new hobbies to suit my reduced level of energy. Im sure you can relate to it all being part of the journey
Im very much looking forward to sharing and hearing more between us Online Community Champions.
All the best,
Michelle
Online community champion
Hi Steve!!
What a coincidence!! Its good to here you are doing good.
When I was diagnosed at such a young age, my focuses on what was important to me would have looked different to you, I will certainly start a discussion on what transplant and cancer was like as a young person.
Thanks!! It was a really rewarding experience as it gave me a proper opportunity to have closure because when I came back from transplant I was straight back into work school exams and didn't get a chance to reflect on what I went through. I am glad so many people thought of signing up as I had the fear that the day was going to be a flop.
Im swaying between Haematology or Stem Cell Transplant Team. I spent a week last year shadowing doctors of different departments at the local hospital which was actually organised my one of my doctors who treated me!!! I was in departments like A and E, Oncology, Theatre and Radiology.
Im glad to be here and thanks for being so welcoming!!
Many thanks,
Cameron
Hi Michelle (again
) )
Thank you for the kind words and will start a discussion about having a transplant as a young person.
Hope you have a great day,
Cameron