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  • edited January 2018
    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
  • 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
  • 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
  • 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
  • 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,

  • 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
  • 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,

  • 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
  • edited January 2018
    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,

  • Thanks Steve,
    I did take a look at links and found them helpful
    Much appreciated
  • 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.
  • 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

  • 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
  • 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
  • Thank you Christine,
    I am pleased that your son seems to be heading in the right direction and hope he continues well with his progress. It is a worrying time for all the family but hopefully there will be better news for us in the future too.
    I’m almost certain my brother has had flag Ida in the early stages of diagnosis, but because of his relapse being just 8 months after transplant it is too strong for his body to tolerate I guess. Anyway let’s hope this azacitidine and DLI route manage to do what’s needed.

    Thanks again and best wishes
  • Mandy I hope so too it’s tough but I’ve found taking each day as it comes helps as does these forums and leukaemia care . Living in hope not fear although that’s easier said than done some days fingers crossed much love x Christine
  • Thanks again Christine,
    Your words are supportive and make a lot of sense. It is difficult especially being in somewhat of a limbo situation and just watching my brother trying to manage the side effects of the drugs but we are still very hopeful that it will be for the greater good eventually, so yes I think it is a day by day time.
    He starts his second cycle of azacitidine on Monday.
    I do hope your son is coping with his treatment ok and he is progressing well.
    Sending all our best wishes
  • Hi Mandy, all the best for the next round of treatment, I hope it goes smoothly for Sean.

    I’m sure Christine’s updates regarding her son are giving you some hope that the same can happen for Sean and it’s helping all keep positive.

    Has he managed to get over the side effects from his last round of treatment ready to face the next one? Fingers crossed he can stay healthy and strong and get through this phase and on to the next.

    Best wishes,

  • Hi Steve,
    Thank you all the positive feed back on here helps a lot,we do appreciate your comments.Sean hasn’t really got over his chemo fatigue which to be honest has surprised us as it is a less intensive one compared to what he has had in the past? I guess you can never tell how it will affect individuals and whilst hopefully doing the job it’s meant for, it is poison as well so there are bound to be side effects.
    He is still up for next cycle this week, onward and upwards hopefully!
    Thanks again!

    All the best
  • Hello again Mandy. I'm glad Sean is still up for his next cycle. It's worth giving it a go for a few rounds. My experience was that the first round was definitely the worst, with sickness and constipation especially. When they were under control, these difficulties haven't returned (thankfully!) I have actually experienced significant fatigue ever since my transplant. This continued for 4 cycles of Aza. Just before Christmas needing a 2nd blood transfusion. Since then, I have had round 5, and much to my delight have felt considerably better and my bloods recovered without any intervention at all! I am now as you know, in remission. They told me at the beginning that it takes 6-8 rounds to really get to work, so I hope this will encourage Sean. I know it's not a given, but it does happen! Please wish him well from me, too. Jane
  • Hi Jane. I think the fact that Sean had been feeling better regards the fatigue before the relapse and treatment has been a bit concerning though it’s good to know that your team told you that it would maybe take 6-8 cycles to really do the trick, so it’s very good that you are in remission at 5, that must be such a relief? I know there’s still a way to go with treatment but to feel as if your on the way must indeed make it all more positive and that there are options too. We are so pleased for you and really wish you all the best with your future treatment.
    Sean had to have a blood transfusion last week as his count had dipped abit too much, he has today started back on Aza so fingers crossed the side effects may ease.
    I know he will try his best all through, and we will be behind him all the way.
    Thanks again Jane
    Best wishes
  • Hi all,
    Sean is on rest at moment but restarts his 3rd cycle of azacitidine next Monday. He is going on ok other than loss of appetite, fatigue and most importantly breathlessness! It is a worry to him ( and us all),and hope that this is just a side effect of the chemo rather than anything more sinister of course. So we continue to keep everything crossed really.
    I think after the next cycle he will have a biopsy, so we will have to wait and hear the results of that fingers crossed
  • Hi Mandy. I have just read your update on Sean. Strangely enough I was thinking about you today and wondering how he was getting on. I am sorry he is having a difficult time with the azacitidine and really hope he can get on top of the side effects soon. You will be pleased I am sure to have the biopsy after this next round. Here's hoping that the chemo is doing its job and you get some good results. Wishing you both well. Try to keep strong and thanks for keeping in touch. Jane
  • Hi Jane, thanks for posting but my message was only partly posted for some reason.
    Anyway how are you going on? Hope your treatment is not causing too many side effects for you?
    Did you suffer any breathlessness whilst you were on aza on its own at all? I know each patient is different in not only how the body reacts but I guess how the side effects can happen.
    Sean will be back on it next Monday for 5+2 days with break over the weekend so still keeping everything crossed.
    Thanks again to keeping in contact Jane it’s much appreciated.
  • No, Can't say I have breathlessness as such...certainly nothing to concern me. I think I have been very fortunate. My main potential problems have been sickness and constipation, both of which are controlled very well by the medication as long as I am careful.I have just finished round 6 and now have a break till just after Easter before my next lot.
    My next milestone is a pre-transplant consultation in 2 weeks to see if there is hope of a donor for me. Meanwhile, trying to continue to enjoy life and stay well!
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