Uncertainty can be one of the hardest parts of recovery. This has been on-going for you now for over 2 years with the last few months being more difficult with the drop in counts. Its great that you feel your team are being thorough but its also normal to have the worry in the back of your mind. It is your own individual preference as to how you cope with it and maybe you need to think about what is best for you rather than what is best for your friends. How will they react and respond to you if you tell them. Sometimes telling people can cause more anxiety for you because you know they worry, they ask lots of questions and emotionally it can be draining. Sometimes it can be another source of support. At the moment there isn’t a lot to tell, you having extra bloods weekly and a bone marrow to check everything is OK. You feel well and you are managing to do your everyday things. If this changes then maybe they would have been a bit more prepared if you had mentioned it before but I feel their reaction will ultimately be the same.
I think you need to consider what you need the most in terms of support and living you life as normal as possible and the impact on when to tell them will have on this.
Thankyou both. I think you are both right in that there isn’t much that’s different on the face of it…it’s just that for me, I suppose, it dredges up possibilities that aren’t there and may not even happen. Back to one day at a time…my brain just keeps forgetting. Thanks for reminding me!
Hello again. Update. Eventually I was called in to have a bone marrow test to see what is going on. Then on Monday this week got a phone call to say I needed another - just 2 weeks later. Had that yesterday. It seems that there is some “instability” in the blood cells, so they needed a further sample to check.
Chimerism still at 97% and platelets have steadied, but the worry is the consistent drop in neutrophils (now 0.88) I am told this could still be a post-chemo effect, or heading toward a relapse. They haven’t used the word " neutropenic" but I guess I must be close. Could it be my new donor cells still fighting off my 3% original blood cells? Sounds logical. But I am concerned that should I pick up a cold or something, there’ll be nothing left to fight it. I don’t want to turn into a hypochondriac, but I am a bit scared to be honest. Next appointment in 10 days to get latest results unless they contact me after the big inter- hospital meeting (on Tuesday).
Setting out to enjoy the next week while playing the waiting game. Thanks for listening. It’s good to unload. I have told my friends now. Mixed blessing. Jane.
Hi Jane,
Really sorry to read your update, I imagine it must be a very unsettling time. I am sending you lots of positive thoughts that this is just a blip and those neutrophils will start rising soon. I had a problem with falling neutrophils but it was around 6 months post transplant. They did recover - I’m hoping the same happens for you.
Take care of yourself,
Greg
Hello, I’m a new Community Champion and only just caught up with your post. I’m terribly sorry to hear you’ve had to go through a worrying time with your bloods. I wanted you to know, I’m thinking of you and have everything crossed for positive news.
As for the neutropenia, I’m sure you know to stay clear of your children (if possible) wash hands as if you have severe OCD and in general live a quiet life until they rocket back up.
Thinking of you.
Ok. So I had the results of the 2nd bone marrow test which confirms that the leukaemia has returned. Early signs, but definite.
It seems I have 2 options. One is a course of “mild” chemo ( milder than before any way, done as an outpatient) to see if I can get back into remission. This buys me potentially a bit of time. But I need to weigh up the good it may or may not do against the bad effects the chemo may or may not have on me.
2nd option palliative route. Having potentially less time, but better quality of life.
Both options leave me open to infection as I have little immunity already because of my lowered blood counts.
I have a meeting on Thursday and treatment, if I choose that route, would start the following Monday.
Anyone got any experience of this? Azacitidine.
Oh Jane, I’m, so sorry to hear this. It’s one of the worries we all face but it’s hard on all of us to hear that somebody’s illness has come back. I can’t imagine how you’re feeling at the moment but I’m sure you will be getting lost of advice and support from your medical team to help you choose the best option, but it must be an impossible decision to make.
Please let us know how you get on with your appointment on Thursday and of course we are all here for you however we can help.
Oh Jane, I am so very sorry to read your news. I will be thinking of you, such a hard decision to make and I hope you have all the support (medically, friends and family) you need at this time. As Steve says please keep us informed and we are here for you as best we can be.
Thankyou, Steve and Rachel. After my meeting yesterday, I understand that even if this treatment works for me, it will simply be a ‘holding’ chemo. Possibly up to 2 years. There may be opportunity for 2nd transplant if I get into remission ( potentially leading to a cure). That would be a decision for later of course. That is good, because at the moment I don’t like the thought of that at all. Treatment starts Monday. Taking one day at a time and hoping I will know what to do if and when I have to decide, thankyou so much for your support. I have great support here, but talking to people who truly understand is different
Jane
Thanks for the update, I’m glad you find good support here however small under the circumstances.
It’s easy for me to say try and stay positive in the hope of getting back into remission which it sounds like there is a chance of and I’m fairly sure you are clinging on to that possibility. I know the prospect of a second transplant will be daunting but it has been done before and if that has a chance of working, to my mind you would take it.
It’s an impossible decision to make I’m sure, but I wish you all the very best as your treatment starts next week and you know that we are all with you every step of the way. I’ve got everything crossed for you and praying that the chemo gets you back into remission so that you get that chance of a second transplant that will give you the cure you need.
Hi Jane,
I am really very sorry to read your news and as Steve says I really hope that the treatment you start on Monday gets things kicked into shape. Anything we can help with on this forum, we are here. I knew someone who had your treatment for AML relapse. He found it tough and it didn’t work for him. But everyone is different, and I hear it can be very successful. Are there other options out there? I keep reading about CAR-T therapy for relapsed blood cancers - does anyone have any info on that?
I will be thinking about you,
Greg
Sorry for not posting sooner but I have been on leave. I am very sorry to hear that you have relapsed, its your worst fears. It must be incredibly difficult to hear that news after everything that you have been through.
I do have experience of working with patients in your position and gone on to receive Azacitidine. As you already know its a milder type of chemo that can be given as an outpatient, it is usually very well tolerated and most patients manage to stay out of hospital. It is still chemo however and you will be at risk of infections and this will be the most likely reason for you to be admitted again. By now you will know all the precautions you need to protect yourself. It normally takes at least 4 cycles of Azacitidine before they can tell how well it has worked and this will probably mean having another BM to assess any improvements. Obviously they will monitor your blood counts throughout the cycles. If you respond to the treatment they can keep going with it for as long as you keep responding. I have had patients that have had this treatment for 18months or so. Throughout this period if you are doing well and keeping fit they might talk to you about a second transplant but really the first thing is to see a response and how well you cope/feel. Quality of life is so important and I know its easy for me to say but try and take it one cycle at a time and concentrate on keeping well by eating and exercising. Your medical team will be open and honest with you about the options you have but you must keep talking to them too about how you feel.
I hope all has gone well today and please stay in touch with your progress or any questions you have.
Thankyou Hayley. I had forgotten how quickly the effects can occur. Had my first injections today and was sick all afternoon. Very much hoping this is just an initial reaction. Don’t fancy that every day! I feel more settled now and have eaten. Yes, I am concentrating on getting through this first cycle and trying not to look ahead too much. As you say, I am at home and for that I am very thankful.
Jane
Hello. I have completed my first round of chemo and doing ok. One more round before I find out if it is showing any signs of doing the job successfully. If it gets me into remission, I will be faced with new choices. One of them could be a 2nd stem cell transplant with new donor. In order to see if there is any advice or help on the forum about this, I have started a new discussion with that title. I am hoping there is someone who has experience of this, either personally or professionally. I have never met anyone yet who has done it twice, although there must be some! It would be helpful to hear about this to help me make the decision as to whether to go for it or not, should this be an option.
Hi my name is Joanna but I liked to b called Jo I am 18 months post transplant and I am having trouble wiv my tiredness I have a gd nite sleep but then I feel tired still plus wen I do little things like walkin or cleanin even then I feel tired plays I do work but also that takes a lot out of me so cud u help me plz thanx x
I think tiredness and fatigue is something that takes some getting used to and affects us all differently. Some of us may recover to near where we were before getting ill and others may struggle. I guess its just the way our bodies react to what they’ve been through and how well they recover.
I’m sure all of us would say we are not truly as fit as we were beforehand and I’ve heard the term a ‘new normal’ being used many times. We need to understand what our capabilities are post transplant and adjust accordingly, realising that we perhaps do get tired more easily. I know that I get out of breath more easily than I did before and I’m almost 5 years post transplant.
At 18 months you are still getting there and you may still see some improvement as time goes on so I would say try not to get too frustrated. Rest when you need it and try not to push yourself too hard. Learn your limitations and try to adjust to suit what you can and can’t do. As time goes on and your recovery becomes more complete you may get less tired.
Hello Jo. Even after 2 and a half years I found myself still easily getting tired. Try not to worry too much about it. Try to pace yourself - like Steve has said - rest when you need to. Your body will tell you. I find some days I am just naturally doing more, because I can…then other days I need to rest more. It took me a long time not to feel bad about that, but as time goes on, it certainly is getting easier to accept. It was helpful to me to know that it is the same for others, and I hope it will encourage you, too.
All the best
Jane