Hi Mandy
I am so sorry that your brother has relapsed, this must be very difficult for you all when he was doing so well. Like Jane there are people on the forum who have had similar experiences and I have worked with patients in the same position. Using Azacitidine followed by DLI is one of the standard treatments at this stage and the aim would be to initially get the disease under control and once this has been achieved the DLI will be given to try and encourage some GvHD. The GvHD can also cause graft versus leukaemia effect (GvL) which means that it can fight his leukaemia and help keep the disease in remission. It is important to remember that it can take 3-4 cycles of Azacitidine before he will see a good response. Also when he has DLI if he doesn’t get GvHD it doesn’t mean that it is not working, his disease can still stay in remission. The treatment can all be given as an outpatient but it will affect his counts so he will have to be more vigilant for infections.
You have been such a good support for you brother and it always sounds like you are all very positive so keep this up. I realise this is disappointing but he sounds physically quite strong which means its a good starting point and he will tolerate the treatment. Unfortunately it is a bit of a waiting game but if you pass on the good advice from Steve and Jane this should help him cope and keep life as normal for him as possible.
Please pass on our best wishes and keep us updated when you can.
Best wishes
Hayley
Hi Hayley ,
Thank you for your advice I think we have most of the procedure in our heads now hopefully! It looks like his treatment starts sometime next week and I think he is down for 6 cycles of azacitidine.
Are we correct in thinking that there won’t be tests along the way to determine if it’s managed remission for him?
Thank you for the help and support you all have shown to us all, we do appreciate it lots.
Infact he has asked me to pass on his mobile number via the site I’m aware that this maybe not the usual way and it’s entirely up to people if they want to use it to text but he would be grateful of any input to help along the way? It’s ******* his name is Sean.
Thanks again all
Mandy
Hi Mandy
I am glad that it is becoming a bit clearer for you all, its a lot of information especially when it comes as a shock. After 3-4 cycles Sean will probably have a BM to assess how he has responded so they will keep an eye on that rather than giving him 6 cycles straight. This will then determine if he has 6 or not and when is the best time to give him DLI. Throughout every cycle his counts will be monitored as normal and although you cannot tell how well he is responding, ensuring the white blood cells do not rise and that his platelets pick up is important. Remember with this treatment it can take a few cycles to see any improvement.
Sean is very welcome to call if he would like to discuss anything, my number is 0207 284 8229.
Best wishes
Hayley
Thanks again Hayley,
That’s very informative as it does give us more of an idea of what to expect. I will tell Sean what you have said and give him your number too thank you.
Kind regards
Mandy
Hi all,
Well my brother is at the end of his first 7 days of azacitidine chemo and he has a bruised and sore belly
But it’s all about it working, is what he says, and that is so true!!
He is doing so well, actually amazing, he is so grounded, which in turn keeps us going to support him, which is the main aim! He has a few weeks off now which I’m glad about!
All we are hoping for now is that he can get into remission to be able to again move forwards with treatment!
Regards to all
Mandy
Hi Mandy,
Thanks for the update. It’s good that he’s keeping his spirits up and you can see that which will help you stay positive for him. A break will be good for him to recover ready for the next session and fingers crossed he can get that all important remission.
Please keep the updates coming.
Best wishes to you all,
Steve
Good to know your brother has finished the first round successfully. For yours and his encouragement I’ve just heard today that after 4 rounds of this treatment, we are ready to move to the next stage with me. Not sure what that is yet, but it’s good to know the azacitidine has done its job. I start round 5 on Monday. Hope his tummy recovers soon. Mine did each time except one when they gave it a bit of a rest by using arms and legs for a change! All the best. Jane.
Oh that’s brilliant Jane so pleased for you that it’s having the desired effect on your illness! To have a moving forward plan is fantastic I bet? I know it’s all the uncertainty with every step but hopefully you will be able to enlighten us with your experiences along our path maybe?
Sean is doing great to be honest he’s not at all worried about the soreness as long as it’s doing the trick! His platelets are rock bottom which is obviously making the bruising worse, but he’s not letting it bother him too much to be fair.
Anyway all the best Jane and please keep in touch as it is a comfort to speak to someone that’s very nearly going through the same treatment just a little bit in front of Sean.
Many thanks and wishing you all the very best
Mandy
Hi Jane, it’s good to hear your update as you’re further down the line than Sean and that will hopefully encourage him. I’m pleased to hear you’re doing well and that you’re ready to start the next round. It sounds like the azacitidine is having the desire effect which is great.
Please keep us updated with your progress as there will be others in your situation that will be getting support from this thread.
All the best,
Steve
Thanks Steve,
Yes definitely moving forwards day by day is the key! He is amazing to be fair, I am so proud of my brother! I am glad he has respite now though for a while it will give his body chance to recover a little.
I hope your keeping well too!
Thanks again Steve
Hi all,
Just wondering if there is anyone out there that has been down the route of azacitidine chemo cycles, and hopefully if that works then on to DLI’s, whether after that the plan would be then be on to 2nd sct eventually or can it be possible to get into a curative position with just DLI? Or maybe it’s a higher percentage success rate after a 2nd sct?
Sorry it’s a bit random but would appreciate any input regarding this issue.
Many Thanks
Mandy
Hi Mandy,
There’s a thread going at the moment in 100 days and beyond about second transplants using Azacitidine and DLI which you might find useful. There is a lady called Jane going through the process at the moment and some useful information from other patients that have gone through it.
Hopefully the following link will help.
Another thread that might help is the following, where Christine’s son is having treatment to try and get him into remission and a DLI or second transplant.
I hope having a read through those discussions will help and you’re more than welcome to join in.
All the best,
Steve
Thanks Steve,
I did take a look at links and found them helpful
Much appreciated
Mandy
Hello Mandy. I am Jane and am on round 5 of azacitidine at the moment and had just this conversation with my consultant last Friday. In my case, I was given 2 options - continuing with the azacitidine alongside DLIs or 2nd transplant. I asked exactly the same question and was told (again in my case, I obviously don’t know if this applies to every situation) that the 2nd transplant was my best chance of cure. The DLI route COULD lead to a cure but was far less likely…but it would give me longer, and I could go this route as an outpatient mostly. It is difficult, I think, for the consultants to be too specific, because there are so many unknowns, but that was the gist of it. I hope all goes well for your brother, and there is a good route of treatment for him. All the best. Jane
Hi Jane,
Thanks for getting in touch. It must be so difficult for you to be able to come to a decision of which way to go when there’s no guarantees, but hopefully whichever one you go with will be the right choice for you Jane.
I will apologise now but i understand only parts of the procedures, and I was wondering is there not the option to have azacitidine, then with DLIs ( if working) then go on to 2nd transplant when the body has recovered enough to take the strong chemo prior to transplant? Or maybe there are reasons why this can’t happen?
My brother has completed his 1st run of azacitidine and is now on rest, he is coping well but has the wiped out feeling more again, which is to be expected.
Anyway all the very best Jane and if it’s ok with yourself I would like to keep in touch every now and again. Thanks so much.
Mandy
Of course, Mandy. By all means keep in touch. I have found this forum really helpful and supportive. As regards your question, there may well be that option, and I would suggest you ask them directly…I am sure they will give you every possible route. I did not even ask for myself as I was offered the straight choice. And as I am 61, I figured that if I spent 2 years (for example) having the DLI treatment and found it did not work, I’m not sure I could face a transplant after all that, and I’d probably be too old to be offered one anyway. So I have opted straightaway for the transplant option ( if I pass the tests) and take it from there. Not relishing the idea, but might as well go for best potential outcome…
Hi Mandy
The decision will be be very individual to Sean, it will depend on his level of relapse, time from transplant his response to the Aza and general fitness.
He could get in to remission with the Aza and DLI without a second transplant but this will depend on his response to treatment. As he is young, if he has a good response the transplant team might suggest a second transplant but he has relapsed within a year so this will have to be discussed and will be a consultant decision. I realize this leaves you a bit up in the air and I am sorry, the next steps will be made based upon his response so as usual its a bit of a waiting game.
He should be able to remain an outpatient for the Aza and his is very positive with great support from you all, so keep focused on this.
Keep in touch
Bw
Hayley
Thanks again Jane and Hayley,
Your words are so appreciated and helpful. I know that each one is so individual and it is very hard to call what the exact route would be, but at least with the information you have given, Sean will be in a better position to ask the questions that constantly go round in his mind I guess.
We are all just trying to move forwards and never lose hope as it’s very important that we remain as positive as possible albeit a waiting game…
Sean has asked me to send his regards to you Jane and reiterate our best wishes to you going through your treatment also.
Many thanks both
Mandy
Hello Mandy , my son is showing favourable signs he had a bone marrow which despite not being very full the core sample has shown hopeful signs . He had flag Ida after he relapsed early December it’s been a tough battle but he’s doing well weight going on no pain mouth improved . Further bone marrow tues then onto DLI when he’s counts are ready flag Ida is a tough regime and it takes a while for things to recover . We’ve learned like others it’s one step at a time the relapse has been scarier than the first time we’ve found .Hope your brother continues to do well and you too Jane if you read this . If there is anything please get in touch it helps to share and everyone on here is so helpful
Christine x