Blood levels post chemo

Caring for & supporting a loved one
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Good evening

This is my first post as a husband of a fighter of AML.

My wife was diagnosed in Mid August with AML and is currently on her 2nd course of induction therapy after the 1st course (AML 17 trial) failed her blast levels had reduced from 80% to 55%.
She is now at day 18 after a course of FLAG IDA but we are yet to see any increase in her blood or neutrophils levels.

As you can imagine after being given the bad news after round one that she is high risk and her only chance of recovery is getting into remission and a successful stem cell transplant we are at a very nervy stage.

Today hasn’t been a great day emotions wise for both of us so I’ve felt compelled you post for the first time to people who may understand the situation.

All I want is the answer to the one question nobody can answer, not even the consultant, whether she can get through this.

We have 2 beautiful children aged 9 and 5 and not having their mum home for 9 weeks now is heart breaking and now I am really starting to see changes in their behaviour.

Has anyone else or a loved one gone through more than one induction treatment and felt similar despair and anxiousness?

Obviously she is fighting as best she can and otherwise seems completely healthy which is even more frustrating.

Thanks in advance

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Hello and welcome, firstly I am so sorry to hear of your wife’s diagnosis but I am glad you have reached out in this forum.

I was diagnosed with AML in 2015, at the age of 39, with an 8 year old daughter so can really understand your thoughts and feelings. Though I was the patient my husband and I have spoken about what happened many times.

I had 4 cycles of chemo, so was in hospital for a long time but we did get through, I am not saying it was easy but want you to know that there is a way through. I can suggest some things that we did to make it easier? Sometimes being proactive helps you cope, it did for us.

Is the hospital she is in nearby? Are you still going to work?

You are not alone, I would be so happy to help further.

Best Anna

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Hi Anna,

Firstly let me thank you for your response and i am very glad you have got through it.

The emotions are so very new to us and were both extremely scared what the future holds for our family so to hear someone else has been through similar and is doing well is a great comfort.

Really could do with some tips to stay proactive if I’m honest as I’m struggling mentally to have any positive thoughts currently. I don’t want to go on too much as this really isn’t all about me but it’s good to have a forum where you can reach out.

The hospital is fairly local and work have been extremely understanding which i am grateful for.

Did it take long for your blood counts to rise? And how many induction cycles did you go through if you don’t mind me asking?

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Thank you and I am very happy to help your family through this, I know how much the help we got in the early days meant to us and still does now. Firstly it is ok to feel how you are so don’t beat yourself up, it is certainly a whirlwind. It is hard to have positive thoughts so this is where being practical comes in (from our experience) Don’t think too far ahead, try to take each treatment cycle at a time, or even each day and I do understand how frustrating this is to hear as people used to say it to me but it really does help!

Yes bloods do take a while to rise, this can be one of the most frustrating things but quite normal. I remember the long wait every day for my blood results only to be told that they hadn’t moved. I assume you are waiting for the neutrophils to come to a level so your wife can have a few days at home? I had two cycles of induction chemo but some patients need another one. Then I had two cycles of consolidation chemo. Has your wife had another biopsy since the first cycle of chemo?
They will do another bone marrow biopsy after the first cycle to see whether or not the AML is in remission, mine went into remission after my second induction cycle.

There are many things I can pass on but it depends on how much you want to know and when and so on. By being proactive I mean taking care of practical things. It helped my husband. He was very lucky as his employers were so supportive, he basically had six months off on full pay to be with me and our daughter. Have you given any thought to how you want to do things regarding work?

Have you got support from friends and family? Have you been introduced to your wife’s CNS (cancer nurse specialist)? Have you spoken to your children’s school? Does your wife work? Which hospital is your wife being treated in?
Apologies for my questions but just so I can gain some understanding of your situation.
Warm wishes Anna

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Hi, I am sure Anna below can be of so much more support than me, but I just wanted you to know that the strength of this community forum is that we are all here to support you and your whole family. I think what we do all share with you are the fears, thoughts and feelings of living with the fear, the not being in control, the not knowing, how to support your children, how to get through this yourself, how to keep up the juggling act etc., etc., When you have the time please let us know how you all are?

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Hi Anna,

My wife is currently on her 2nd round of induction chemo after the 1st lot failed (still 55% blast cells on bone marrow biopsy after 1st round) her counts never rose after the first round. The doctor basically told us it’s one of 2 things at the time either her counts are slow to rise or there were still cancer cells in her blood, unfortunately it was the latter which is why we are so anxious waiting on counts to rise this time around.

She did have a brief respite of a weekend between 1st and 2nd induction course which was lovely yet very emotional at the same time.

With regards to work I’ve always been the sort of person who needs to work to stay focused so going back after 6 weeks or so has helped in a strange way although they have made it clear I’m free to go and do what I need to do without question. Without friends and family I’m not sure I could cope although I’ve always been a hands on Dad there are still days where you need a break and just sit down!

We have been introduced to the specialist nurse who has been great, she sent a box of activities and books explaining her condition for the children and has been very hands on in sorting out her brothers appointments for the potential stem cell transplant.

School have also been very understanding and supportive to the children although our youngest has only just started reception he has taken a while to settle presumably your circumstances are a factor.

She is being treated at Heartlands hospital in Birmingham who I cannot fault at this stage their care has been first class.

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Thank you Erica I feel very grateful and glad I’ve joined the forum already and thank you for your kind words.

You are right though the not being in control part, waiting and not being able to have any answers over any outcome is extremely frustrating and the worse part of being a loved one of someone with this illness. Thankfully I have a great support network of friends and family to help however I do tend to bottle things up and I’m still struggling with telling people how I’m feeling in all this and usually just respond that im ok as part of me feels guilty that it isn’t me that is poorly if that makes any sense?

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Hi
It’s not unusual for the leukaemia to still be present after one cycle of chemotherapy, in my case it happened after my second cycle. If it still doesn’t happen they will do a third cycle of induction, this is something that happens. It is good that your wife is coping fairly well with the treatment and feeling quite well? How was she diagnosed?

I remember that when I came home between cycles it was a strange and emotional time, I got so used to being in hospital, the routines etc that when I got home I felt a little lost. Of course it was lovely to be at home but I was pretty exhausted.

While I was in hospital, I had my ipad and used sky GO rather than the very expensive hospital TV. You can pay for the hospital wifi monthly or weekly which was a life saver for me. Then I could facetime my daughter and she could also message me etc.

I’m glad that your work are being supportive, it really helps doesn’t it and normality is a comfort at times, this is why we still made sure my daughter went to school and her dance classes. She visited me regularly and brought her school work in with her so I could help. Is your 9 year old a girl or boy? It’s good that the school are supportive too, they made sure my daughter knew she could talk to their pastoral care person whenever she wanted, she did do this many times so this is worth making sure of.

Its great to hear that you have the support of the CNS (nurse specialist), mine was brilliant and still is. My husband would email her via his iphone whenever he needed to, had any questions or concerns. They are highly qualified in Haematology so a good source of information. Mine would speak to my consultant and then relay information back to us. Also my mum rang her a few times when she was worried.

Has anyone given you advice on the benefits you can claim and that you can apply for a blue badge?

You can order leaflets/booklets from the main Bloodwise website which you will find extremely useful, there is a diary you can use to make notes, put questions in etc during your wife’s treatment which I would recommend doing as we found it very useful, there is so much to take in and its easy to be overwhelmed and forget things. I also found these notes helpful after my treatment. There are booklets about AML, transplants, coping and so on and they are really helpful.

The care in the NHS for Leukaemia is fantastic so your wife is in very good hands, they a very very experienced at treating this, my care too was brilliant and I trusted my consultant 100% and still do. If you want to know more let me know

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Don’t forget carers and the unsung heroes and although I am in a different situation, I have CLL, diagnosed in 2003, and have remained on watch and wait, very luckily. I certainly know about the ‘I’m OK’, I even go to the GP and he asks me how I am and I say ‘oh, I’m OK’, mad or what!! I also have never shown or spoken about my feelings, that was part of my upbringing. I saw being a coper and strong were qualities, times have changed, I hope. I also think other people then pigeon hole me as having those traits so are then scared if I do say how I am or feel because it does not keep the status quo. Since diagnosis I don’t want friends to try and fix me, just to be there for me and listen to me and certainly not to tell me how well I look when I feel terrible inside. I now have some priceless friends. You make so much sense so please keep posting.

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@Gazh200780 Yes I agree with Erica, carers are unsung heroes, I know how hard it was and still is on my husband so you are doing great.

My husband had a couple friends that he would text, would you find it easier this way rather than saying how you feel face to face… if you want to that is. My husband also used to text a couple of my friends who were nurses as he felt comfortable messaging them.

And don’t be afraid to accept or ask for practical help… with food, the children. It really helped us and friends want to be able to do something because close friends will be feeling helpless. So mine would sometimes have my daughter or run errands. Also my sister and school mum/dad friends would make sure my daughters projects and any other school stuff was taken care of and would remind my husband of things that needed organising.

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I was under the impression they may not do a 3rd cycle but only a clinical trial (Maybe another version of induction) but I’m praying it doesn’t come to that. The nurse today told her they are pleased with her platelet count which is rising steadily, I’m hoping that’s a good sign? Her neutrophils don’t seem to be rising as fast although we have had a tiny increase to 0.03 today.

My wife was diagnosed after feeling unwell for a couple of weeks, the doctors originally said it was a virus and have her antibiotics but She got progressively worse to the point she couldn’t walk up the stairs without being breathless. She insisted on a blood test and later that evening at 11:15 they called her to go straight into hospital.
Her Haemoglobin levels were that low the doctor said her has never seen someone still alive in 28 years with levels so low…how she was still conscious was nothing short of a miracle.
A transfusion then followed and a BMB which confirmed our worst fears.

Luckily at Heartlands they get free TV which is a godsend for her and she has a tablet and books etc to keep her occupied but i fear it is affecting her mentally now having been in for 9 weeks, she certainly needs a break now for the sake of her own sanity.

We have 2 kids a 9 year old girl and a 5 year old lad.

Wasn’t aware we could claim for a blue badge although we have spoken to McMillan who have told us our entitlements which are next to nothing due to our earnings although they were very helpful.

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Yes that is probably so as my treatment was three years ago and things change all of the time so what you have been told will be correct, if you aren’t sure or need to go over her treatment plan again do ask her consultant or CNS, I assume she is checked on every day by members of her team?? I wasn’t on a trial as there wasn’t one available when I was diagnosed but most patients are on a trial, its usual with AML. I understand your concerns but try to be reassured that your wife’s medical team will be very experienced at treating this and will liaise with other teams about the best course of action if needed. For example when I had quite a major concern during my treatment and voiced it to my consultant he spoke to one of the top haematology professors in the country for a second opinion and to get the latest AML trial data to help me come to a decision.

Neutrophils are slow to recover so a rise no matter how small is good, some days they don’t move at all.

My diagnosis was very similar, unwell for a couple of weeks, had my bloods done purely as an afterthought by a nurse and later that night a phone call telling me to get to hospital immediately. All my blood counts were out of range and I had 90% bone marrow affected.

My daughter was a similar age to yours when I was diagnosed and we used to FaceTime which helped.

Being stuck in hospital for so long is soooo frustrating and I know exactly how your wife must be feeling! I was allowed, depending on my blood counts, to go for walks to the main hospital reception with family etc and that was a massive treat… I’d sit there with a hot drink and watch people coming and going! There was also an small outside area I was allowed to sometimes. I built up lovely relationships with the nurses and consultants, I used to joke whether or not I was allowed out to play then wait for my consultant to let me or not! Chatting to the HCA’s and cleaners helped pass the time, they were lovely and other patients, some I still keep in touch with. But then there are always the more difficult ones too who give you something to mumble about. My Mum and Dad would bring cross words when they came and we’d sit in my room (sometimes I had to be in isolation) doing them. Does your wife like box sets? I watched a lot, so did my husband while I was asleep!

The blue badge will be useful when your wife is recovering because she’ll probably be pretty exhausted after treatment and it means you will be able to park nearer the entrance so less distance for her to walk. I couldn’t walk far until I built myself up again.

You will be able to claim PIP as its not means tested, they don’t take into account earnings. We don’t qualify for any benefits either. I was award PIP (personal independence payment). Does your wife work?

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I think it’s just a watch and wait scenario at the moment. They are doing another bone marrow biopsy next week if her levels don’t rise sufficiently but I can feel the nerves creeping in already. It’s so painful waiting and now knowing if it’s worked especially knowing how upsetting it was 1st time around.
She has been on the ward the longest now so has a good relationship with the staff they all love her because she never causes a fuss and is always so nice to everyone.
She has got through a load of box sets, we like to watch them together but now I’m back at work we have to just compare notes on them over the phone, not seeing her all day everyday does hurt though

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Hi
I to was diagnosed with AML back in 2006 and was on the AML15 trial which scheduled me to have 2 courses of FLAG IDA followed by 2 courses of ARA C. After Induction course 1 it took me longer than expected to start growing any neutrophils, I think about 3 weeks and then after the 2nd course it took 62 days! And thankfully I am here to tell the tale! My 3rd course was not given until 9 months later, and only then after much discussion between the trial and various hospital consultants and I was never given the 4th course

I also have 2 daughters, aged 9 and 14 at the time, I look back and really feel my husband had been the hero throughout it all. He juggled hospital visits with looking after the girls/ the house and all the emotional strain. Thankfully he was also given time off work. He set up a blog (social media was in it’s infancy back then!) and both he and my eldest daughter kept it updated so friends and family could keep up to date with my progress. He got into a routine and brought the girls to visit me on a Wednesday and one day at the weekend. The youngest would bring reading from school and her teacher and I would exchange notes in her reading diary. When he brought them in, he would leave one of them with me and take the other for a drink in the café and then half hour later - swap! Otherwise I found it too much as they would both be understandably ‘fighting’ for attention with me, but it also gave them vital mum-daughter time

My youngest daughter remembers little of that time now, my husband tried to make it a fun time when visiting and those are her memories - singing in the car - they had a 30 min journey each way, sleepover with friends ( which gave my husband much needed breaks), and drawing on the plastic hospital aprons

Like Anna, I too felt very strange coming home after a long spell in hospital - it takes a while to adjust and fit back into the family dynamics particularly as I was feeling exhausted and couldn’t help, and I felt vulnerable out of the hospital environment.

Lastly, is there a social worker in the hospital who can help with PIP claims and maybe ESA - I saw one who filled everything in for me - a real help

Best wishes to you all

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Hi Susie,

Thank you. Glad to see you’ve come through this after being diagnosed such a long time ago, the early days as you well know are notorious for messing with your head!

Thankfully today we had a small rise I my wife’s neutrophils only to 0.05 but a rise non the less also her platelet level are steadily rising the doctor said they are happy with the increase and they are optimistic. Just to hear the fact someone is optimistic is music to my ears to hopefully we can get some good news shortly and start with the stem cell transplant and recovery.

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I think time seems to go so slowly when you are in it but hopefully looking back in years to come it won’t seem as if it was so long. Take care both of you and keep posting.

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Hi and welcome to the forum.
I was diagnosed 11 years ago with Philadelphia positive ALL. I had one course of induction chemo on UKALL12 which had a similar result to your wife, didn’t achieve remission. I went home for the weekend, then was back in on the Monday for a second induction course, this time on FLAG IDA.
Getting that news after the first chemo felt like the original diagnosis all over again, my daughter was 6 years old at the time and all I could think about was wanting to see her grow up.
Emotions are all over the place and as Anna has said you take it a day at a time, both as a patient and partner. I remember each morning being thankful to still be here to fight another day. It helped that we have wonderful family and friends who did their bit to keep us going, by making sure my wife was OK and visiting me. Hopefully you have support from your family and friends too.
It did feel like a long time before my levels to come back up, but they did eventually and I achieved remission with that second chemo. I then went on to have 2 further rounds FLAG IDA, a couple of weeks home before the stem cell transplant. A total of 6 months in hospital.
Try to stay positive.
Kind regards,
Nick.

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Thanks Nick,

Your story sounds so familiar, hopefully we can get a similar result to you with this round. The doctor did say FLAG IDA is a stronger course than the original so it may take a while longer for her results to improve, it’s just the waiting that is the worst part. fingers crossed and thank you for your comments

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Hi Gary. Yes I thought that when I read your post, how similar it was to my own experience. The waiting is really hard, and there is lots of it.
It’s a case of finding little positive to help keep you going.
This group is really good to help you realise that you’re not alone and people do get through it.

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Just thought I would keep you all updated.

My wife’s neutrophils levels are slow to rise compared to her other cells so the consultant ordered a bone marrow biopsy. After an agonising 2 day wait we got some good news!

The FLAG IDA has worked it’s magic and the early signs are that her blasts have reduced to 2% which is essentially remission, they are cautiously optimistic as there are still some test results they are waiting on however it is the best news I could have hoped for and to be honest the first time I’ve genuinely been happy in 10 long weeks.

They have agreed to let her home for a break for a couple of weeks dependent on the other results , she will have some outpatient appointments in the meantime then go back in for a 2nd course of FLAG IDA then it’s on to the stem cell transplant.

It is early days on a long road to recovery but a little win. And someone recently said to me it’s the little wins that ultimately get you through.

Thank you all for your comments and I will keep you updated, it’s time for a nice home cooked meal for my wife and definitely a nice glass of wine!

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