Janemcs
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Dealing with relapsed AML

Janemcs
Posted by
15 Nov 2015

 I was diagnosed with acute myeloid leukaemia in December 2014, achieved remission after 3 cycles of chemo but then relapsed in August this year.

Since then I have had 2 cycles of chemotherapy. The first was FLAG but my biopsy 3 weeks later showed that while it had reduced the leukaemia, but hadn't got rid of it completely. So for my second cycle I've had something called GCLAC which my consultant had to apply for funding for.

I'm 2 weeks post finishing that cycle and I'm feeling really bad. I've got bad mucositis which is making me feel pretty rubbish and I've had a temperature spike so I got admitted yesterday. Despite being hit with three different types of antibiotics my CRP infection marker is stills going up. Fingers crossed I start to recover soon...

When I recover I'll be having a stem cell transplant which is my only chance of beating this disease once and for all! On the positive side my sister is a 100% match and she is desperate to be my donor. She is even losing weight for me. Her BMI was slightly over the upper limit for donors, but in the last 9 weeks she has lost 25lbs to ensure she is well inside the healthy weight to range. Now that is sisterly love!

Anyway, this is my first post. Nice to meet you all, and I hope to keep blogging through my recovery and stem cell transplant in a few weeks time.

Comments

17.11.2015

Really sorry to hear about your relapse Jane and your recent set back with the infection. I've got everything crossed for you that the antibiotics kick in soon and you start to feel better.

On the plus side it's great to hear that your sister is a 100% match offering light at the end of what must seem a very long tunnel at the moment.

The important thing is that you're not alone and we're here to help in any way that we can and our patient experience team are contactable on 0808 2080 888 or via support@bloodwise.org.uk at any time if you ever need any support or information on the journey that lies ahead.

I'm a transplant patient myself and am now more than 11 years in remission. I'd be lying if I said it was an easy process but it was a bearable one and you will get out of the other side. I didn't do a great deal of research before going in for my transplant but asked loads of questions during the process and would certainly have found this guide useful: https://bloodwise.org.uk/sites/default/files/documents/seven_steps_march...

The other thing that might be of interest to you is the opportunity to read about others experiences of transplant. Anthony Nolan have a thriving community while we also have a blogger called Mark who like you decided to write a blog throughout his treatment: https://bloodwise.org.uk/people/mjn

I'm also more than happy to talk to you about my experiences at any time. My email is ajackson@bloodwise.org.uk.

Keep going and remember that we're all thinking of you and are behind you every step of the way!

18.11.2015

Hi Jane, I to am really sorry to hear of your relapse. I was in hospital having a Stem cell transplant in May this year aft I relapsed 3 years in remission. I want to offer my hand of support also like Andy. We have a support group on Face book should you wish to join our community as well. U will find the link by visiting my blog at www.fonzandcancer.com I wish you well and hope you decide to link with folk that have been where you are. Andy is a great guy also and he will be committed to helping you. Thanks again and nice to meet you. 

Fonz

18.11.2015

Thanks for the comments. I'm glad to say I am starting to feel much better now. The antibiotics are working and I hope to be home in a few more days. I'm touched by all the lovely support both here and on the Bloodwise Facebook page. It's nice to know so many people have been through it and have come out the other side. That gives me hope.

Aileen Lamb
18.11.2015

Hi Jane,

I'm currently recovering from my second induction chemo for AML diagnosed in September. 

I wanted simply to send you my very best wishes and a big hug as you  get ready for your stem cell transplant. It's all very new, very scary and very emotional but get your support network gathered round you and don't be afraid to ask for whatever help you need.

Good luck

Aileen