I was diagnosed with Acute Myeloid Leukaemia at the end of July 2021 and spent much of the rest of the year in hospital. I had a Haplo transplant in April 2022, I’m 7 months post transplant. I am very lucky to be feeling completely back to normal, no Graft-versus-host-disease and I’m 100% donor. I live about 2 hours from the transplant hospital so I have a fortnightly video appointment with them and visit my local hospital for bloods the week in between, so still hospital contact weekly. Has anyone any experience of when I might be set free? Initially I found the check ups reassuring, now they make me anxious! I asked the specialist nurse yesterday and she said I would have close contact with them for a year post transplant, that’s five more months, I want to get on with life.
I’m a year ahead of you, and I can totally understand how you feel. I’m also two hours from my transplant hospital, and one from my other hospital, so it’s so time-consuming, costly and (dare I say it?) boring attending all these appts, because the waiting can take up most of a day.
It does get better on the appt front. One year ahead of you, and now I only see my transplant team every 6 months, and my local hospital every 3 months (though I do have a monthly blood test and phone call.)
However, I must mention - though it may not happen to you - that around the 7 month mark, I started to get infections from viruses lurking in my system from many years ago. The Epstein Barr virus reared its ugly head, and required months of monitoring, then a month of outpatient treatment, and it unfortunately caused glandular fever type symptoms. Then I had shingles twice and had to go back on the Aciclovir. And C.diff - a bacteria many of us harbour in our guts - became a problem, because the antibiotics wiped out my good gut bacteria, allowing this to proliferate, and that took many months to sort out. (I’m off the antibiotics as a result, and that’s actually a pleasing outcome for me.)
I think this demonstrates why they keep the frequent appts up, because there are so many infections that can yet arise, particularly from this point on (when off the ciclosporin and aciclovir etc.) Other people have trouble with CMV and other historical viruses, and I expect some people get new infections too, as the immune system grows and develops post-transplant. They say it takes at least a year for our immune systems to mature and to be able to cope with things. So it’s probably wise that we’re monitored closely- all sorts can and may well crop up. I certainly hadn’t expected going from feeling fighting fit at month 7 to being attacked by several horrid bugs from Aug to May - it was very frustrating. But they sorted each thing out; it did pass, and I’m feeling brilliant once more.
And on another happy note, once I’d rid myself of the C.diff, my appts dramatically dropped and I was able to go back to work, and I can report that my immune system appears to be working really well now - I’ve not caught covid or anything else in the workplace.
Hopefully though, you will keep virus and bacteria-free, @Suey, and your appts may drop off sooner in that case. But in my case, several infections meant regular (but reducing) appts for a further 10 months.
Hope my experience gives you another perspective on it all.
Btw, guess where I’m writing this? You got it! A hospital waiting room, ha ha.
All the best.
PS And I’m sorry, I missed that the appts are now making you anxious. It’s a dreadful feeling, isnt it? I picture my blood cells being examined under a microscope, and they’re all grinning and waving at the haematologist, happy as Larry. That helps, thinking of it as a check up to see how wonderful your blood is. And I take lots of things to distract me during the waiting. I’ve often written replies to people on this forum, whilst I’ve been waiting. Or I go off and eat some chocolate cake. ; )
Thanks for posting and it is great to hear how well you are doing after your transplant. Often recovery takes a lot longer so it must be so reassuring for your team to see you doing so well.
Our colleagues at Anthony Nolan demonstrate the issues assessed in follow up clinics here Recovery: Body | Anthony Nolan. Did you Nurse Specialist mention the reasons why you need this follow up when you talked to them? I would mention how you feel next time you speak to the team. I am sure they undertsand the anxiety you are feeling but at the same time they will want to keep assessing you after such an intensive treatment.
If you do want to talk things through with us please do call: Blood cancer information and support by phone and email | Blood Cancer UK
Thanks for that encouragement, I have never really had anxiety issues before (even through this cancer journey) but I got it into my head that I was being told everything looked good but because they kept checking my blood that there was something they were concerned about! I was also frustrated with not being able to plan ahead, it’s my daughter’s graduation on the 15th, over 4 hours from here, and I had to be very insistent that I wasn’t going for bloods on the 14th as we are travelling over the weekend before, I am going on Friday instead.
Sorry you had viruses etc, I had c diff when I had been home about a month, not a pleasant experience.
I will have to just be patient with the appointments, sounds like for a while yet! Hope yours has gone well today
Thanks for sharing your journey and also for being so open about the difficulties and frustrations.
It’s really pleasing to hear that you’re doing so well after your transplant.
I can totally relate to the mental battle post treatment, especially prior to follow up appointments. This is absolutely a normal way to feel so please be kind to yourself. Stay patient and positive and take care.
Get it completely but I try and look at the positives of being in the system. It does feel draining at times but conversely it can be super reassuring to know you have a team there for you should you need them.
I had first hand experience of that despite being five years in this week when one of my lymphoma nodes popped up. One phone call later and I’ve a scan booked in. If we were not in the system this would have involved waiting for appointments with my GP and potentially a long wait for an appointment for a scan.
So I think there is a good reason to remain in the system and under close monitoring.
So easy to think along those lines, isn’t it, @Suey? Once you’ve had one shock diagnosis, suddenly the unthinkable becomes all too real, and it then seems any other horrible diagnosis could just as likely become a reality. I remember thinking I could have bowel cancer, with the C.diff. All sorts go through the mind - especially with all the endless testing and waiting. I really do get how you feel.
Yes, these appts make planning so, so difficult. And with something as important as your daughter’s graduation, you absolutely want to make sure of things. Congratulations, btw, to your daughter. What is she graduating in? And I hope you have a fabulous time cheering her on. You must be so excited! Best of luck to you all with it.
Hi @Suey, I was diagnosed with Acute Myeloid Leukaemia with Myelodysplastic syndrome (MDS) in March 21 and had a stem cell transplant in October 21.
I am 13 months post transplant, yesterday I had my latest phone call with the consultant. He stopped my co-trimoxaze and acyclovir having been on then since the transplant.
He also moved my follow up appointment to every 3 months. After my transplant I was on weekly appointments and as I got better they moved to 2 weeks, 3 weeks, 4 weeks then 6 weeks after about 10 months. So it does get easier just a long road.
I think of the appointments as at least they’re keeping an eye on me and have just discharged me with a follow up in 5 years.
Keep going and things will get better
@Suey I also meant to say that I have had loads of test recently as part of my 12 month review and I take the view that if something is wrong the hospital will be in touch before my appointment for my ongoing reviews therefore no news is good news.
I just live my life now how I want to live it, if something happens then I also know that the clinical nurses are only a phone call away.
@Fullofbeans Yes we are really looking forward to the graduation, we haven’t seen our daughter since early August as she started working!
She studied Maths at Sheffield Hallam, she got a First too despite her course being disrupted by covid, her dad having a heart attack and my Acute Myeloid Leukaemia diagnosis! She was also my stem cell donor about 6 weeks before her final exams!
She also landed a good graduation scheme job with Toyota in Derby while I was in hospital.
Thanks again for your kind words, I’m back to my usual optimistic self today
Thanks @Muzza, I had undiagnosed Myelodysplastic syndrome (MDS) too. I have been told that my appointments will extend to every 3 weeks soon. It would be nice to have appointments made until the year mark instead of having to wait for the next one each time, at least I could look ahead and know which days are free to do stuff!
Hope you continue to do well
Oh @Suey please do congratulate your daughter from me and I bet you are the proudest mum ever.
You deserve to enjoy yourself now.
Be kind to yourself
Oh my goodness, @Suey - your daughter is Super Woman to achieve all that under such hugely worrying circumstances! And to be your donor too…it brought a tear to my eye.
Enjoy the wonderful occasion, and please pass on my huge congrats to her. What an amazing daughter you have. X
Hi all, thank you for all your good wishes, I was told on Thursday that my appointments will go monthly, happy with that!
If I’ve done it right this is a photo of me and our daughter, we had a lovely day despite the rain xx
Photo brilliant @Suey , thanks so much, a very proud day I can tell.
Great news that your appointments going monthly as well.
Look after yourself
Aw, fantastic photo, @Suey! Congratulations to your wonderful daughter.
And so pleased you’re moving to monthly appts - that does make life easier. X