Fantastic Mandy, brilliant news! It is always great to hear good news stories!
Wishing you the very best,
Greg
Thanks Greg, we are very aware that we are not out of the woods by any means but it is just good to hear some more positive news
Hi all,
Just a quick update my brother is completely off cyclosporine now so we are all hoping that nothing major starts off and keeping our fingers crossed of course but I was wondering if this is the time when there is a higher risks of complications and if anyone out there experienced any particularly around this time?
He has finished about 5 days now?
Many thanks
Mandy
Hi Mandy, that’s great news and he seems to have made fantastic progress to be off Cyclosporin already.
I would have thought if any problems were going to show up with such as GvHD they would have appeared as the Cyclosporin was reduced, which is what happened for me so they stopped reducing my dose and I didn’t come off it for about 2 years. I have to say that having suffered GvHD post transplant I haven’t experienced any problems since the Cyclosporin stopped.
Fingers crossed everything continues smoothly.
All the best to you all,
Steve
Hi Steve, thanks so much thats what we think too! It does seem very quick to be off it already doesn’t it?
However the team are really happy with his progress so even though we can’t get ahead of ourselves as we know how things can change quickly along the journey we are indeed hoping that he reaches a full recovery in the years to come.
We hope your keeping well and thanks for your wishes
Take care
Mandy
Hi Mandy
Glad to hear that your brother is doing well. Its positive to get off the cyclosporine, is he about 4 months post transplant now? Obviously he is still at risk of GvHD but the longer he goes off CSA and with no GvHD the less likely he is to get it.
Sounds like its all going well.
Best wishes
Hayley
Thanks Hayley
Yes he is still doing fine and it’s day 124 today so your right about 4 months post transplant. We are still in early days stage yet I guess but we are very pleased how he’s recovering, and it’s lovely to hear he can go and do a little bit at work now and again ( which helps him get some normality back!)
Thanks for your kind wishes
All the best
Mandy
Hi guys, it’s been awhile and my months post Everything has been absolutely spot on to be honest, he’s been back at work,building up energy and strength bit by bit,all his counts have beeen very good which has been fantastic however last tests his platelets have suddenly dropped to 26!! All his other blood numbers have not moved and he’s not on any meds other than the penicillin so we are slightly confused/worried ? He has had his childhood immunisations in the last month? Just wondering if anyone out there has had any similar experience?
Thanks all Mandy
Sorry all my auto correction must have clicked in without me realising! Meant to start by my brother has been doing great and he is 8 months post transplant!!
Hi Mandy,
Really sorry to hear your news. I don’t have experience similar to your brother’s. My counts were consistently low and only started improving from the 20s around 8 months post-transplant. What I was told by the doctors was to try to ignore the one-off results as they can be affected by a lot of things - what was more important was the trend. I’m really hoping this proves to be a one-off and your brother’s counts bounce back at the next test.
All the best,
Greg
Hi there Mandy,
Thanks for the update and I’m pleased to hear that your brother is doing well in his recovery and I hope that his drop in platelets is a minor blip.
I often think we perhaps get too hung up on counts because we’re monitored so often, and I wonder if you monitored a healthy person without the complications we’ve had you might see similar discrepancies.
I guess if he’s had some of his immunisations that might have affected things slightly perhaps. I didn’t have any blood tests close enough to my jabs to have been aware of any changes so it’s difficult to gauge whether this is something normal.
I presume that his blood results have come via his medical team so I assume that if they were worried at all they would be taking steps to address it. If they are happy, particularly as his other levels are within the normal ranges, I would try not to worry about it too much.
Depending on when his next tests are due you’ll probably find that they’ve bounced back up.
All the best,
Steve
Hi Steve and Greg,
Thanks for your information it’s very helpful to get different perspectives on it all! Yes hopefully just a blip with having the immunisations etc.
They have got him in today for a bone marrow test so they are taking no chances which is good! Unfortunately then he will have to wait a long week to get results of course
Hi all,
Unfortunately on our return to clinic today for results my brother has 9% of leukaemic cells back, so it’s not just the blip we were hoping for! We have to go back next week to go through the plan but it looks likely that he will be on azacitidine to try for a remission again and then DLI afterwards?
Just wondering if anyone has any experience with this route or advise?
Thanks
Mandy
Oh Mandy, I’m sorry to hear this. It’s clearly not the news you’d hoped for but there are others who’ve had similar experiences here and have gone down this treatment route. I hope the medical team can get him back into remission quickly and without complications and get things restarted with a DLI.
I know it will be hard but please try to stay positive yourself and keep supporting your brother the way you have been to this point. We’ll all be here to support you too and those who have gone through the treatment your brother now needs can hopefully help. I’ll try and find a link to some of the threads that may help you and posting to those threads may promote a response which will help.
I hope your brother is coping ok and is facing this new challenge with a positive outlook.
Sending you best wishes,
Steve
Mandy,
There’s a thread with three other patients going through the same treatment. It’s a while since there’s been an update but it may help to know that your brother isn’t the only one that this has happened to. I see that Rob has been on the forum most recently in mid November so perhaps a post on there might get a response?
Have a look at the ‘Relapse after 11 months’ thread in Day 100 and beyond.
Hope this helps,
Steve
Hello Mandy. I am Jane (61 now) and my leukaemia returned in August after a 2 and a half year remission following a stem cell transplant. I am so sorry to hear your brother is facing this. I started azacitidine in August and I have just completed my 4th round. I was really nervous about starting chemo but this time has been relatively easy. (The first time was rough)
Advice? As Steve says, stay positive…this is sometimes hard, but we can help each other with this. I take certain steps to help myself ( I feel I must do something!) For example, I am careful with food…especially when my white cell count is on the floor; I avoid hot crowded rooms where germs spread like mad; I ask friends not to visit if they have colds, etc; I also have anti-bac gel at the front door to help avoid spread of bugs (nobody minds!) ; these are small things that help me.
I have remained ok and live life pretty much as I would normally within limitations of tiredness and hospital visits. I do get sore sometimes (not often) at the injection sites, but it goes quickly with the cream. I have also need of laxatives which makes constipation manageable.
I do wish your brother well. It is a scary time, I know.
Take care and if you want to ask anything, I’d be glad to help if I can
Best wishes,
Jane
Thanks Steve and Jane,
We appreciate your help and advice
Sorry seems only part of my message appears!
Jane it is reassuring that your going on well with the azacitidine treatment and are generally having fewer problematic symptoms than other chemo as you have all been through enough already.
I hope that your progression continues to be a good one and that my brothers experience will be similar with the right outcomes afterwards.
Many Thanks again both for taking time to respond
Here’s to focusing on a brighter future for all
Mandy
Yes, I hope all goes well for him too. It seems a long time before we find out if the chemo is doing any good, but I figure that, as I have no control over that anyway, I try to concentrate on making the most of the “here and now” and every day I feel well is a bonus!
All the best to you and your brother.
Do keep in touch
Jane
Thanks again Jane, yes I understand what you mean it’s a long process with no indication of how things are actually going which must be a little frustrating and worrying at times, but it is good way to look at things from the perspective of the ‘here and now’ I think.
I hope you go on ok Jane and get the results needed soon.
Best wishes to you and your family
Mandy