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
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
Mandy
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,
Steve
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
Mandy
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
Mandy
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.
Mandy
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!
Hi all,
Just a quick update on my brother, he had been quite poorly last week and had poor blood +liver readings so the aza was put off for a week and he had transfusions, platelets and liver scan. Luckily things seemed to improve again towards the weekend and he restarted the aza this week so at least he will have completed his 3 cycle come Tuesday of next week. Fingers crossed it’s doing the trick.
He has an appointment with his consultant next Wednesday where I guess they will be arranging the bone marrow biopsy as he did say they would do it after third cycle.
So onwards moving forwards with the hope that the results come back positive.
All the best
Mandy
I am sorry to hear this…but glad the Aza has started again. Hope the results continue to improve. Thinking of you of course. Take care and I hope you both manage to have a happy and relatively healthy Easter. Best wishes, Jane
Hi all,
Just another quick up date regarding my brothers treatment, we spent most of the day at hospital on Tuesday where Sean had his bone marrow biopsy done (which didn’t take all day) but had to have platelets and bloods. He is feeling the benefit of it at the moment which is good to see.
We await his appointment for next week sometime to hear results! Let’s hope it’s good news then they discuss the next stage of treatment!
Best wishes to all
Mandy
Hi all
Unfortunately today we had news that my brothers bone marrow biopsy shows he’s not in remission and has a small increase in leukaemic cells, so as you can imagine it’s upsetting and definitely not the news we wanted.
He hasn’t seen his consultant as yet,but an appointment has come through for next Wednesday ( 2+ weeks after biopsy).
I was just wondering if there is anyone out there that has had relapsed AML and received Azacitidine cycles, how many did it take to get into remission ? Or any professional that can shine any light on this situation for us?
Many thanks
Mandy
Hi Mandy, I am so sorry that Sean did not get good news from his biopsy. I feel for you both, it is what we all dread to hear. I don’t know whether this will help you, but I had AML and had a stem cell transplant in 2015. I relapsed last August and have since been on azacitidine. I was found to be in remission after 5 cycles, although I had initially been warned not to expect it for 6-8 cycles…as it often took that long to work. I cannot remember how many cycles Sean has had. Try to stay positive…(I know it’s not easy, but worrying without all the facts is not a good use of precious emotional energy I have found…). When you see the consultant, he/she will be able to give you a better idea of what is going on and hopefully have good options for your brother. Do keep in touch. I know there’s not much we can DO as such, but just so you know there’s folk thinking of you as you go through this. Lots of love
Jane
Hi Jane, thanks for your reply and I do take on board the staying positive and waiting for facts before worrying too much.
Luckily for Sean he has managed to have a meeting with his consultant this morning and has had some fears clarified so even though he hasn’t got any false hopes the plan is to carry on with the Aza for 3 more cycles and they will take a more in depth look at his Flt 3 mutation and maybe take another approach towards that.
We are not jumping for joy but moving forwards cause there’s still a plan set so we have to go with it.
Probably next week Sean will hear more about start date for Aza etc…but at least the bank holiday isn’t going to feel like such a long wait now.
Thanks again Jane hope your feeling well and enjoying your free time at the moment. All the best for your future treatment+ stem cell transplant.
Love Mandy
Hi Mandy
I am sorry that the response to the Aza hasn’t been as good as hoped. Sean is only half way through the treatment and it can sometimes take a while to work, so I am not surprised that the consultant wants to carry on with another 3 cycles. The positives are that the chemo has kept the disease under control and he has been relatively well so keep going.
You are always so positive and I am sure at times it can be hard, but you are a close family and you support each other and that is so important. If you or Sean feels like they need any support you must ask either his nurse, consultant or your GP. You are welcome to call me anytime my number is 0207 284 8229.
Keep us updated and please send my best to Sean.
Thamks
Hayley
Thankyou Hayley,
Yes we are only half way through and hope that it will do the trick after the next lot! It’s definitely worth going on and trying to get the results that we need. He hasn’t always been very well throughout the aza but he has to push forwards with it and hopefully his body may get a little more resilient to it as he goes along ?
It is a positive that the chemo has kept it dampened down so let’s hope that the next lot will manage a remission.
Thankyou so much for your information,advise and offer of help. We really appreciate it and may take you up on that along the way.
Much appreciated thankyou
Mandy
Mandy , so sorry to hear your news and my delay in noticing your news .
It’s hollow and gut wrenching when you hear news like this I hope you’ve all managed to consolidate and move forward to the next cycle …much love Christine x