My mum was diagnosed with AML in September 2020, and we was told 12 to 18 months with treatment. She was started on pallative chemo straight away. She was having regular blood transfusions until the end of November. She had 6 weeks where bloods were normal, and no need for blood transfusions. Since the middle of January shes been having regular transfusions due to low red blood cell and platelets. Her consultant has now ordered a bone marrow test and stopped her chemo until he gets the results. I’m out of my mind with worry. Shes lost so much weight. Can anyone offer any advice. My mum is 77.
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Hi @Wendle, I am no good at medical issues and it is natural for you and your mum to be ‘out of you minds’ with worry, you are a loving, caring daughter and she is the patient.
From my experience I would say that good communication is so important to share what you are both thinking and feeling.
Secondly that you look after yourselves and have treats.
The waiting and not knowing is the worst time of all.
We are here to support you both and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Please do let us know how you both are. Take care and stay safe both of you.
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Hi @Wendle. I am thinking of you both at this difficult time. I think one of the difficult things in living with a blood cancer is that we, and the consultants, rely on results from blood and marrow tests which we expect to give us straightforward results and help plan our treatment. So often after all the waiting time the results are less than clear and more results are required. We feel time passing and a fatigue settles in. All this in the time of Covid too and lockdowns. I hope you are able to find sparks of enjoyment in other ways while you wait. The bunch of rosebuds you watch open and bloom, the gorgeous sunrises the phone call from a friend, that deliciously naughty dessert you would not normally eat. I understand that sometimes that dessert feels like a mouthful of sand and it is hard to find any joy. You wake up and think ‘Only six more days to the results’. I wish I could make it easier for you but do know that we feel your anxiety and know how hard it can be and are willing you strength and hoping you find a little sparkle of joy along the way.
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I can only imagine what you are going through @Wendle and it’s only natural for you to feel so worried. I know that your mom will really appreciate having you around and all of the support you give and that’s the best you can do. Cancer is mostly a waiting game for those of us who have it and those who care for them. I hope that your worry eases soon. Do let us know how you get on.
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Yes I will let you all know how me mum gets on. I feel so helpless, but talking it out helps loads. Had a girly sleepover with her last night
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Forgot to mention my mum is in denial, she thinks she’s just anemic and the Dr’s have made a mistake. Is this normal for her to think like this ?
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That sounds fun. It’s not something men seem to do as I suppose it’s considered unmanly. Hope you had a good time.
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I can’t comment on that except to say how I felt. I think I just felt relieved that I had an explanation for what had been happening to me and was keen to get on with my treatment. I guess it’s different for everyone though.
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Hi @Wendle it is so natural for your mum to be in denial, it is all part of the shock process.
Give her time and a girlie sleepover is probably just what you both needed. There is no right or wrong to how we process information.
Just take so much care of yourselves and keep having fun together.
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Oh @Wendle I can only imagine how worrying things must be for you right now.
Has your mum’s consultant given you an idea of when you’ll get the results? Do you have a contact number for him to talk things through, or the contact details of your mum’s clinical nurse/key worker/chemo nurse, to talk this through with them? As you’ll know, your mum’s treatment team would be best placed to offer you advice and answer any questions or concerns you have have.
If it helps in any way though, you’d be really welcome to talk things through to a member of the support services team here who is a clinical nurse specialist. She wouldn’t be able to offer advice in the context of your mum’s individual circumstances, but you might find it helpful to talk things through with her. If this might be helpful, feel free to message me directly on here and we can arrange a call (just click on the little envelope when you click on my name), or email us at support@bloodcancer.org.uk. Or give us a call on 0808 2080 888
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They said 1-2 weeks for the results. My mums nurse is lovely and answers all our questions the best she can. Its just such a worrying time. I see my mums light fading everytime I see her and it breaks my heart. I just wish one of us kids could go with her to her appointments, but with covid its not allowed. I’m hoping the consultant will allow one of us to go with her when she gets her results, im waiting to hear if we are.
When she was diagnosed he said her prognosis was 12 to 18 months. Are they usually right or can they be wrong. I’m hoping they are wrong in that diagnosis
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Hi Wendle
I am 73 and reverted back with AML after two years in remissions, about 10/11 months ago.
Like your mum I have been fairly dependant on red blood cell and platelet transfusions alongside Azacytidine injections.
I too went through a time when blood counts were pretty good … by AML terms!
I can imagine the mental anxiety you and your mum are going through.
However I hope it will help you to know that my chemo was also halted so an accurate position of how my bone marrow was fairing could be gained.
I am now back on my monthly Aza cycle and weekly top-up for red blood cells and platelets as my bone morrow is producing very little of anything …the positive part being that that means it is producing few leukaemia cells too.
Today my haemoglobin count was 78 and platelets 14!! Tomorrow is transfusion day.
I am explaining this in the hope that you can see that what you have been told is not altogether bad news and your haematology team will have a plan once they know the results of the biopsy.
Please talk to your mum’s consultant rather than wait as all may not be as dreadful an outcome you fear.
Good luck to you and your mum.
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@JohnC thankyou so much for your reply, this has given me new hope
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So mum was admitted to hospital on Monday as feeling unwell and had a temperature. Her bone marrow test went ahead as planned yesterday and she got her results today. It showed some red cell activity, but very little white cell activity and a few lukeamia cells. So the bone marrow is relatively empty. The decision they made was to give her a break from chemo to see if her bone marrow function picks up. A decision to restart chemo or not will be made in a few weeks time.
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Hi @Wendle, thanks for letting us know that your mum has been admitted to hospital, it must be a very worrying time for you all.
Please look after yourself.
Please let us know how you are and how your mum is doing.
Hi @Wendle I hope that you and your mom are coping and that you’re able to give her some comfort at this difficult time. With luck her bone marrow activity will increase but keep us updated and don’t forget to look after yourself too so that you can be strong for your mom.
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Seen me mums dr today. The plan is to restart chemo on 22nd March, but only over 5 days instead of 7. This wil be every 3 weeks. They have stopped her daily chemo pill. This will be her 7th cycle. The dr says he will review her again after this cycle. He also said she can stop chemo at anytime if she’s had enough. Hes hoping her bone marrow will improve, so everything’s crossed and we are hoping her blood behaves. He said the chemo has done its job in keeping the cancer at bay
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Thanks so much @Wendle for the update, it really seems to me that your mum’s doctor is tailoring her treatment to what might be best for her.
How are you both doing emotionally?
Tbh I really struggled at the start of all this, I know it sounds silly, but I kind of starting grieving then. My mums my best friend, so it really hit me hard. My mum suffers from anxiety since my dad passed away 5 years ago, and is on medication for that. So she finds it all a struggle most days, especially with covid and shielding. The only thing keeping her going is the hope of a miracle. And you know what, even though I know its not curable, im going along with her, its the only thing keeping her going
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Well @Wendle, those feelings sound so natural for both of you and certainly not silly.
Please keep letting us know how you are both thinking and feeling and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
I think when I was diagnosed I sort of started grieving for what I thought I had in life and it being taken away from me.
Does anyone else know what we mean about prematurely grieving.
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