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janemill
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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…
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Thankyou for replying, Rob. I appreciate it. I have AML which has relapsed. May I ask if your mouth problems were GVHD related? And were they a result of the actual transplant or the DLI treatment you had before? I realise that everyone is different, I am just trying to build up a picture to help me as I think this…
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Update. On Friday I saw my consultant. The chemo (azacitidine) has done the job, but this is short term while deciding the next treatment. My choices are 2nd transplant. Start again. High risk potentially better outcome. Or Azacitidine plus DLIs . Less aggressive treatment, mostly outpatient, lower risk ( nothing is risk…
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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…
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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…
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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…
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I, too was really pleased to hear this story. It is good to know it is possible. I went 2 and a half years before unfortunately relapsing. I now face the possibility of a 2nd transplant (if my current chemo gets me into remission) and it is quite hard to be able to look ahead very far. Since this lady had an active life…
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Thankyou so much
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Update I am currently on my 3rd round of chemo. Not doing too badly. Sore injection sites, but I'm sure it could be much worse. Not likely to hear about whether it is being successful in getting me into remission until after Christmas, which may be just as well. Still swinging between days of looking ahead and making…
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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…
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Thankyou so much for posting this. I have not up until now been in contact with anyone who has actually had a 2nd transplant. I do hope your progress continues well. I almost certainly would be glad to have the opportunity to ask you about the experience - thank you. At the moment I am waiting to see if this chemo will get…
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Thankyou all for your care. I heard today that the blood has recovered enough and I have started my 2nd round of chemo. Feeling very relieved having gone through all sorts of emotions. Still feeling well and very thankful. What a roller coaster it is. Onward and upward!
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Update. Bloods the same. White counts still 0.1. Now on gcsf injections to try to boost the count ready to try again next week. I can't have chemo of course, while my bloods are this low. And I'm told they can't delay for too long....but haven't given a time scale. (Any ideas?) Feeling quite calm and looking forward to…
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Update. Went for my second round of chemo today only to find my white cells have dropped too far. We are now waiting for them to rise up and I am back next week when hopefully we can get going again. Is this a normal part of this treatment ? I had been under the impression that it was every 28 days on a regular basis. The…
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Thankyou all so much. I feel a bit more positive now. I know this may not even be a possibility as I may not be offered one ( that will be up to the doctors and dependent on me getting into remission anyway, I realise) but I am the sort of person who likes to think things through for a while rather than have to make a…
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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…
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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…
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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…
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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…
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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…
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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!
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An update. So, 8 weeks in, with almost weekly blood tests, white cells and haemoglobin still not recovering yet....slight upward movement with platelets. Bone marrow test booked next week. Still thinking ( hoping!) along the lines of undetected infection, and they are being very thorough with trying to find the source.…
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Thanks. I am quite upbeat about it at the moment...it was just a shock to hear the bloods had dropped after such a long time. I knew it could happen, of course, I'd been warned often enough! Still, onward and upward. Enjoying the summer and forgetting about it again for another week..........
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I am aware that I haven't updated for a while. That's because I still don't really know what is happening. My blood tests seem to have stabilised, except for the platelets which continue to descend. Doctors seem ok with it, so that is positive. Back to weekly blood tests keeping an eye on the trend. I am very grateful for…
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Thankyou
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Thankyou . I think you are right Nichola, in that it could be a mixture of lots of things causing the tiredness. Sometimes it's easier than others. Sometimes I beat it and sometimes I don't. At the moment (rightly or wrongly) I am doing as much as I can this week prior to these forthcoming tests....just in case the doctors…
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Thankyou Sue
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Thankyou Hayley. Sorry for delay in replying. I seemed to have plateaued on the fatigue side of things, until recently when it has become a little more marked. I saw the consultant yesterday, who told me that my bloods were showing changes....lower platelets....lower haemoglobin. Hopefully just a sign of hidden infection,…
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Thank you all for your replies. It certainly does help to get a fuller picture of what is going on. And yes, Hayley, most definitely I find it very helpful to hear of others' experiences. I am generally a very positive person I would say, although it is difficult for friends and family sometimes to understand how I feel,…
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Thankyou for your response Sue. It is good to hear I am not alone in the way I feel. I have found this latest stage quite difficult. People keep telling me how well I look.....isn't it amazing?.......good to see you 'back to normal'. And I am generally well, and it is amazing and I shall be forever grateful for this…