Hi there all,
My name is Mandy, I am new to the forum and am joining really on behalf of my brother. He is a 52 year old who has AML flt 3 mutation, he has had 3 runs of chemo at our local hospital and he is soon to have a stem cell transplant at the QE hospital in April.
If there is anyone out there with advice or maybe some else who has a family member with similar diagnosis we would appreciate your input.
Also I would just like to say that my mom and myself went to the Anthony Nolan day in Birmingham last Friday and we were very grateful of all the help and support that we received, it was well worth attending.
Many Thanks
Mandy
Hi Mandy and welcome to the forum.
I’m one of the online community champions and was also at the education day on Friday. It was good to meet you and your mum and I hope you found the day beneficial. Even as an ‘old hand’ at all of this there was still new things that I learned so it was well worth attending.
I know we have many members on the forum that have been treated for AML and hopefully someone has experience of the mutation you mention.
I guess the process for the transplant though will be common to us all, no matter what we are being treated for so once your brothers chemo is complete he will follow the same procedures we have all experienced so we can all help with advice and tips.
If you have any questions about what is going on or anything you think may be strange that is happening to your brother you my find that someone has already posted about it and never be afraid to ask any questions you might have. We’re all here to help and support each other.
Best wishes to your brother, you and your mum.
Steve
Hi Steve,
Yes it was a beneficial day for us to be able to speak to people who were ‘old hand’ and we did pick up things we hadn’t heard before so it all helps in this long road ahead!
I must just mention how great Ciara and Hayley were too, so much knowledge and so professional but also with a kind,warm and caring manner which put us well at ease as first timers!
Also I understand what your saying regards the transplant process being the same and will be very appreciative of any input along the way.
Thanks so much for your time Steve and all the best to you too
Mandy
Hi Mandy
Really great to see you here on the Forum. Keep us updated on how your brother is getting on and i know you’ll get some amazing peer support on here. Thanks for your kind words about the Education Day too - we love doing them and I’m glad you and your mum found it helpful.
Chiara
Thanks Chiara
I will keep you posted on how he goes on, we know it’s a long road ahead but we are hoping all issues he encounters will be able to be overcome eventually.
We really did get a lot from the Education Day and really appreciated the friendly warm welcome from yourselves. I would recommend it to others in the future as it was a worthwhile event.
Many thanks
Mandy
Hi all,
Well it’s been a bit of a rocky road so far for my brother he was doing so well the week and half in hospital leading up to his transplant and then everything changed as his temperature spiked on Good Friday and they have said he had a brain seizure, which basically ended up with him being rushed into critical care at the hospital where he remained until Tuesday (day before his transplant). Amazingly his transplant still went ahead (and like we had been told was quite a low key event ) which only took 40 minutes in his case. So here we are at Day 2 he is doing surprisingly fine generally so far however we know we have a long way to go yet! Hopefully no more visits to critical care please!!
Mandy
Wow, that must have been a shock Mandy, but I hope he’s ok now.
The transplant itself is surprisingly simple and no more dramatic than having a transfusion. Considering how life changing it is it’s so straightforward. We all know what he is going through and the path he has yet to follow but so many of us here are testament to the success of the process and we are with you and your brother every step of the way.
Please keep us posted and come back for support as and when you need it.
All the best,
Steve
Thanks Steve yes it wasn’t the starting block we were expecting. However as long as it all goes kind of to plan now we can cope!
He’s doing well considering what he has been through so we will focus on the steps forwards and support him along the way.
Just a quick question did anyone suffer headaches that came on sudden especially when medication was administered?
Thanks again
Mandy
Hi all,
Luckily my brothers headaches seem to be subsiding slowly so let’s hope it will continue! He looked a little brighter today so that’s great to see even though early days.
Onwards and upwards hopefully!
Thanks so much to Anthony Nolan
Hi Mandy,
I seem to remember suffering headaches from time to time. Part of my treatment was having intrathecal chemotherapy, which was injected into my spinal cord. That usually gave me a headache, largely because it was injected into my central nervous system.
I also had headaches sometime when I had transfusions. He’s probably feeling quite low at the moment anyway so headaches may be something he will suffer from, possibly due to fatigue? I found that keeping hydrated with water helped.
Hope he’s doing OK and that his recovery is smooth.
Steve
Hi Steve
That’s the headaches seemed to have subsided some what now thank goodness.
I do think you are correct that it could be all part of the fatigue he is experiencing and he is trying to keep hydrated and eating as much as he can to keep his strength up to aid his recovery.
He is doing ok thanks Steve so slowly day by day we move forwards!
Thanks again
Mandy
Hi Mandy
I am sorry that your brother has had such a difficult start to the transplant but I am glad he is beginning to recover. The headaches could be a result of his infection and/or medications. Some of the medications that he will be on can cause headaches but his transplant team will be aware of this. It is reassuring that he is feeling better and they are subsiding.
Fatigue is common especially after a stay in critical care so again this is normal. He is doing all the right things in ensuring he is eating and drinking well. This might take some time to fully improve but as long as he carries on with what he is doing and managing a small amount of exercise he should continue to make progress.
I am sure you and your mum are both doing an amazing job in supporting him. Please keep us updated on his progress.
BW
Hayley
Thanks Hayley,
My brother is doing ok generally and as we are aware things will be a slow pace of recovery but like you say the eating well and trying to keep moving as much as he can is a very important part of it all.
On a good note his headaches have improved and there has been talk of him maybe coming out of hospital towards the end of next week so we will hope that happens!
Thank you for your support
Mandy
Hi all,
My brother is doing quite well generally so all heading in the right direction! We were just wondering as he tries to get out for short walks as much as possible is there anyone out there who may have had any problems with sunlight and how it has affected them immediately after sct and longer term?
We are heading towards day 30 so it is still very early days.
Thanks
Mandy
Hi Mandy,
Thanks for the update. Its great that you brother is able to get up and about and I assume you are being cautious about what he is exposed to.
I recall being advised to avoid too much sun after my transplant as I think the treatment has an effect that makes patients skin more sensitive. I was advised to use a high factor sun cream if I was out in the sun. If anything go on the side of caution.
The issues with my skin were longer term because I got skin GvHD and being exposed to the sun triggered it, so I had to be extra cautious.
All the best,
Steve
Hi Mandy,
Fantastic to hear about your brother’s progress; sounds like he is doing well.
My husband is 2.5years post-transplant and his skin is incredibly sensitive to sunlight. We had been told to expect that anyway but we have been led to believe it’s particularly bad because he’s still on a drug called Voriconazole. I’m not sure if this is one your brother uses but it has had a massive impact on my husband’s sensitivity.
He wears full sunblock, a hat and gloves now if he’s driving on a sunny day and when he is outside for more than a short period of time. Gloves especially as his hands have burnt a few times already this year. And full clothing. It may be worth having some hat/gloves/sun block on hand just in case your brother is the same?
Bit of a shock to the system as my husband has always been a huge sun-lover but he will be keeping it covered again this summer (I have given up the sun in solidarity…and am trying to convince him to join me for a spray tan instead) (He’s not convinced).
Hope the walk goes well and your brother continues to improve.
Best wishes 
Thanks Steve and E Dawson
My brother has never really been a sun worshiper kind of guy which is a bonus.
So basically it’s take the precautions as much as possible especially in early days though he isn’t in the drug mentioned but he was wondering if there comes a time when the skin becomes more tolerant (for want of a better word) to the sun?
Thanks so much
Mandy
Hi Mandy,
Now that it’s been mentioned I think the main risk was whilst I was on Ciclosporine which made my skin more sensitive to sunlight. Now that I’ve been off it a while I’m less cautious out in the sun, though I do take precautions if I’m going to be in strong sunlight for any length of time.
Steve
Thanks Steve,
Talking of ciclosporine is there any connection with immune suppression drugs reduction and stage of recovery or does it not play a part at all as my brother has now been reduced to 100mg twice a day and on day 35 ? Basically is that a good sign or nothing to get too excited about because it’s very normal for all at this stage?
Does anyone have any views regarding this please?
Thanks
Mandy
Hi Mandy,
I think you can only trust your doctors on this. My cyclosporine was reduced quickly after transplant as they were trying to get me on a trial and around Day 50 I ended up with bad acute GvHD which they think was possibly not helped by the quick reduction in cyclosporine. Post-transplant, everything is like walking a tightrope, trying to get the balance right. Generally, coming off cyclosporine is a good thing but coming off it too quickly can be bad, as in my experience. So I would encorage you to talk to your doctors, ask questions specifically about your brother and trust in them that they are making the right decisions to help your brother navigate this period in the best possible way.
Wishing you all the very best,
Greg