Acute myeloid leukaemia

@SarahMum - best thing I have heard all day. Just read this and told my hubby too. We both send huge yippees! Love and every good wish to Danae for all the adventures that are ahead. YOU are a wonderful mum, bask in her glory as it’s yours too xx

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Congratulations Danae on getting a First in your degree :clap::clap::clap::clap:

Hope the job hunting goes well and you find a job that you love.

All the best for the future x

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@SarahMum and of course Danae. What a huge achievement and I send so many congratulations.
Continue celebrating throughout the summer and do please send us some graduation pics if you can.
Thank you for letting us know and this had made my day.
Kindest regards
Gemma

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Hi everyone

Thanks for all your congratulations and best wishes :blush:. We hope everyone is doing okay out there.

We have had Danae’s graduation :woman_student: day! It was soooooo wonderful to see Danae beaming :grin: all day long! We spent the day on campus and then went for a lovely dinner in the evening.

We spent the next day packing up Danae’s stuff and she is now home with me :blush::two_hearts:. She is applying for lots of jobs and is very keen to find her next chapter… (thanks to forum members who have reached out to her on LinkedIn- any help is much appreciated :blush:)

She will be attending appointments at a fertility clinic next month to see what damage the chemotherapy has done and see if there is a chance that some eggs can be harvested. Here I go, just writing that sentence has made me cry :cry: But I am thankful to have my gorgeous girl here with me. Her vision throughout treatment was to return to uni and get her degree. She has absolutely smashed it :two_hearts:.

Here are some pics as promised…

Look after yourselves you special people and we will check in soon

The DD :blush::woman_student::two_hearts:xx





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Oh @SarahMum and Danae. what a momentous celebratory day for you both and what a wonderful beaming smile.
I will be thinking of you at the fertility clinic.
Just take your time to find a career that you enjoy.
I still don’t know what I want to be when I grow up and I am 75yrs old.
I always took jobs because I needed the money and they fitted in with my sons schooling.
As the saying goes the world is your oyster, and in this day and age it is.
Enjoy your special time together
Lots of love to you both xxxxxxxxx

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Thank you @SarahMum for sharing these beautiful photos. An incredible achievement. Many congratulations! Thinking of you all in the coming days and months. Willow xx

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Hey up lovely people :blush:

How are we all doing? I got my girly home with me so all good here :blush::two_hearts:

Danae is undergoing fertility treatment atm. She is injecting herself three times a day and will (hopefully) have some eggs to be harvested at the end of this month. This still hurts my heart so much. Another thing that has happened as a result of the leukaemia/treatment :pensive_face:

But, I have her home with me and that is sooooooo lovely :blush::two_hearts:. And, guess what..? She has only gone and got herself a job! :smiley:. She will be moving to Bristol in September to start. So, not too far away from me. We are already planning shopping trips and girly weekends!

So onto the next chapter. I still get scared/anxious but I am so, so thankful that we are here, in this moment. The love and pride I have for my daughter fills my heart :beating_heart:

Anyway, over to all of you. I hope everyone is doing okay. Danae always asks me for updates from our BC forum family :blush:

So, take good care of yourselves and do keep checking in when you can.

Sending love and positive thoughts

The DD :blush::two_hearts:xx

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Oh how absolutely wonderful that Danae has got a job, I am sure they will be lucky to have her and as you say @SarahMum Bristol is not too far away.

Unfortunately the treatment process must feel that it goes on and on, but at least Danae’s medical team are on top of it. Fertility is something that is rarely talked about by anyone on here and it really should be as it such an emotional and medical process and certainly not easy. Really look after yourself Danae you have so much going on over the next few months.

What has happened is my sister has been diagnosed with a t cell lymphoma, which was a bit of a shock, (I have Chronic lymphocytic leukaemia (CLL) so completely different). She was given the diagnosis, knowing that she lives on her own, over the phone and within 24 hrs in hospital in Truro and started on chemo. I have to say they seem to have been great there. But it is a far more complicated saga which my little digits are not trained for, saved to say complicated medically, emotionally, physically and practically involving frequent, over hour long, phone calls separately with her, her daughter and son in law who all have their own agendas and dynamics.

@SarahMum perhaps you will always be an emotional rollercoaster with your Danae, you’re her mum.

I have love and pride for both of you, you really deserve to be our Dynamic Duo, keep posting.

@Erica I am so sorry to hear about your sister :worried:. Is there anything we can do as we are down that way. If she needs anything? What a shock.

Thinking of you xx

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Hello @SarahMum

Firstly such brilliant news about Danae’s job, how wonderful for her and for you to have her nearby to continue your fun weekends.

It must be hard to see Danae continue to be affected by the treatment she had for her Acute myeloid leukaemia (AML), it all seems very unfair but I really hope the fertility treatment goes as well as possible and that Danae feels well.

Thank you again for all your updates, it certainly warms the heart and sending all our best wishes to you and Danae.

Speak soon

Gemma

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Dear @Erica

I have just read your post about your sister, what a shock for you and very close to home. I wanted to reach out and offer support to you and your sister if you should need. I am really glad that the team in Truro are good and that she has been treated in a timely fashion.

Please know we are here for you as you have been for so many other people affected by blood cancer, we are only a phone call away.

Take good care

Gemma

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Hi @SarahMum I really appreciate your offer xx

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Hi @GemmaBloodCancerUK I really appreciate it, I know you are only a phone call away, look after yourselves

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Hi everyone

Just stopping by to share that we are back in the social media spotlight alongside the lovely @GemmaBloodCancerUK :blush: It feels so positive to be able to support the @BloodCancerUK-SupportTeam . Thanks for all you do :heart:

So everyone, check out the posts and get sharing!

Thinking of you all :blush:

The DD :two_hearts:xx

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@SarahMum you spoke so sensitively and beautifully.

Total star :star_struck:

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I have just been diagnosed with Acute myeloid leukaemia (AML) . Just stated my first round debilitating chemo . After the recovery period of four weeks I can go home . How soon does. Onsolidstion therapy begin after that

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Just catching up - @Erica I am sorry to hear about your sister. I am also horrified that she was given the diagnosis over the phone. I don’t think that should ever happen, least of all when they knew that she lived alone. Good to hear that she is having good care in Truro. Take care of yourself - this must bring back lots of feelings about when you first got your diagnosis.

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Hello Cordeiro, I’m glad you’ve found this forum. I didn’t find it until after I’d had my stem cell transplant, and how I wish I’d found it sooner!
You’ll find a lot of people here with years of combined experience of Acute myeloid leukaemia (AML). I think treatment plans differ according to which centre you’re in, and also depending on the genetics and risk level of your leukaemia.
The big takeaway message is take things one step at a time, try not to google too much (or you will terrify yourself), and stay positive.
In answer to your specific question, it very much depends on your centre. I was allowed home for a week between my two lots of preparatory chemo. I had Vyxeos (CPX-351) which was gentle as far as side effects went, but caused prolonged neutropenia. My team was obsessive about infection risk so I actually had to stay in hospital in an isolation room for ten weeks until my count came up a bit, then I was back for the second dose and transferred for stem cell transplant after six weeks. I hasten to add that most people’s counts come up much quicker!
For the actual transplant I was only in for three weeks. The 10 days conditioning chemo pre-transplant isn’t a bundle of fun, but much better than I’d feared.
The first Covid lock down started ten days after I left hospital, and I developed skin Graft-versus-host-disease, so to be honest the two years after the transplant were much worse than any of the chemo/ hospitalisation etc!
The good news is that although I had high risk Acute myeloid leukaemia (AML) I am now six years post diagnosis, five-and-a-half post transplant, in full remission, and living an active life. I’m sure you will find your own way to cope with things - it’s a lot to deal with at the beginning. I found the specialist Bone marrow transplant nurses incredibly helpful, and the fact that the transplant unit emphasised that I should ring about any concerns, even if not apparently to do with the transplant. They (correctly) said that no matter how good my GP was, s/he would have little knowledge of Acute myeloid leukaemia (AML).
Good luck with it all :smiling_face_with_three_hearts:

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Thank you your comprehensive and informative reply Diana . I had my first chemo week last week and was in no fit state to reply with the added 10 different transfusions .

The thought of a stem cell transplant worries me more than anything as being 70 I was regarded as borderline but with healthy internal organs . The MRI consultant was honest enough to say some people don’t make it through at my age which is a frightening thought !

I’m so glad you made it and live a full life but the two year battle with grant v host must have been a tough experience .

Thanks again for your advice and you’re right I should take one day at a time .

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No need for apologies nor for thanks - sharing experience is what the form is for.

I understand your additional anxiety about being 70. I should have added that I am also 70, just 65 at time of transplant, but my consultant also warned of a 20% risk of not making it. I seriously considered not going ahead, and just making the most of what time I had. Thank goodness several consultants talked me out of that course of action, particularly as we didn’t know that COVID was about to appear 6 weeks down the road.

I do think that being fit before diagnosis, staying positive, and getting as fit as possible afterwards make a huge difference to how well you cope.

Don’t hesitate to ask any questions, and good luck again🥰

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