Blood levels post chemo

@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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I like little wins, they all add up. I expect you will both be absolutely exhausted and that’s OK. Take care of yourselves and spoil yourselves. Please let us know how thing are going.

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@Gazh200780 pleased to hear that your wife’s treatment is going well and that you will be able to enjoy some time at home as a family.

With AML it is definitely about the little wins, one day at a time and one step at a time. I know this can be frustrating to hear, I remember people saying it to me and wanting to scream but it is what gets you through.

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Hello @Gazh200780,

Thank you so much for keeping us updated with your wife’s treatment and hospital visits. I am so delighted to hear about her test results and so pleased she gets the opportunity to have a nice home cooked meal with you!

It sounds as though this news has made you very happy-especially since you said this is the first time you’ve genuinely been happy in 10 long weeks (although understandably cautious too). Given the good news, what you and your wife aiming for next?

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We’re just taking it one day at a time. She was only home for 5 days and had to go back in with a nasty blood infection and a fungal infection on her lung so it has been a tough couple of weeks.
Thankfully the microbiologists and doctors have worked out an effective treatment and she’s now recovering.
Some good news that her neutrophil levels have now increased steadily and another biopsy revealed the cancer cells are now at 0 so we’re just waiting on the consultants decision whether to have another round of chemo of proceed straight to transplant. Thankfully her brother is a full match so there is no hanging around for a donor.
There are down days still, especially as it’s our little boys birthday this week which she may miss and having the stem cell transplant means she may not be home for Christmas but we are still thankful there seems to be a light at the end of the tunnel and the good news is outweighing the bad currently!

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Hello @Gazh200780,

I am thrilled to hear about your wife’s test results and I am really happy that she has found a donor so quickly-especially since it’s her brother.

You mentioned a little bit about your wife missing your little boys’ birthday. It is a common issue for people to miss holidays or birthdays because of treatment. How did you tell your son about his mother’s illness? We have a topic thread about the impact on family. If you feel comfortable, would you mind sharing some of your thoughts about telling your children about your wife’s diagnosis? It would be hugely valuable to others struggling with a similar experience.

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Hi, it must be a really tough, emotional and physical time for all of you, I will be interested to know what it is like for you all and your brother in law and family having him being the donor. Please also let us know how your little boys and you both cope with a little one’s birthday and Christmas.

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Hello… Just wondered how things are going ?

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Hi Anna,

So far so good thank you. My wife is now almost 2 months post transplant and her blood levels are almost at a normal level, the donor cells are at 97% which the doctors are already pleased with at this stage. At the 100 day mark she will have another bone marrow biopsy to check if the mutations she had are no longer present which I think will be a really anxious time for us all.
She has had a little bit of sickness recently but I think it may have been a bug rather than any sinister GVHD as it seems to have subsided after a couple of days.
Thankfully so far other than weekly appointments she has remained at home and we are starting to get some sort of normality back although the fear of what lies ahead is always lurking in the back of our minds.
I’m tremendously proud of her so far she has overcome some serious obstacles and is a remarkably strong woman.
Fingers crossed she is now on the road to recovery.

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Yes, fingers crossed for your wife. How are you doing emotionally and physically?

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