AML\Remission\Relapse\Being Positive

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 Hi, hope the holiday period is as good as it can for you!

I wanted to just update my situation and see if anyone is on the same journey.

After a 3-month bone marrow biopsy early Dec, it was seen that there where abnormal cells, so after another biopsy where they took a piece of bone!  I got that dreaded phone call from my consultant saying I had relapsed. The good thing is that there is further treatment, a couple of days later I was in hospital, starting the first of two cycles of FLAG Ida than hopefully to have a Stem cell transplant (as long as a donor can be found) although I had not had this treatment before I have had 4 cycles of intensive Chemo! And know what to expect.  I was told this was stronger the pervious treatments.

Currently in hospital and finished Chemo and now Neutropenic, similar side effects from pervious treatment and we all know there not great! Now awaiting for bloods to recover (3-4 weeks), but as I have caught COVID (in hospital) I have been isolated with no visitors over the Christmas period! Not great but the team on the ward ha made it as good as possible.

If anyone is going through or been through the same and can give any insight to the process would be good especially the Stem cell transplant process as it will be the specialist team who will update me on this but that could be next month!

Stay Positive Thumbsup

Gman (Garry)

 

 

 

  • Hi again Garry  and sorry to hear about your relapse.

    As you may remember, I have a completely different type of blood cancer (Non Hodgkins Lymphoma) I relapsed multiply times between 1999 to 2014…… and I am pleased to say that my 2 Allo (Donor) Stem Cell Transplants (SCT) stopped this cycle back in Oct 2015……. and I remain in remission to this day.

    SCT is indeed a very specialist process so you are going to be meeting a complete different team and have to learn a new set of terminology.

    To help folks navigate SCT we do actually have a dedicated Stem Cell Transplant support group where you can talk with other people like myself who have navigated the SCT journey.

    Do join the group and put up a post and introduce yourself and we can help you get your head round the SCT process.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • HI Mike,

    Hope you are doing ok.

    Thank you and yes, I do remember after reading your “story”, thank you for the information and as normal very useful.

    I will join the group.

    Thanks again

    Garry (Gman)

  • Hello Gman

    Sorry to hear about the relapse and hope by now a search for a donor has been successful. I am currently in hospital for AML treatment and have had 5’separate chemo doses over 2 hospital visits. Currently neutropenic so waiting for the counts to start moving up. I have a stem cell being arranged with an unknown donor. It is going to be a challenge but the best option for a long term cure but no guarantees on outcome. See if you can speak the the stem cell specialist CNS nurses to give you some advice or read the book from blood cancer UK called Blood stem cell and bone marrow transplants the seven steps. You can download a free copy from blood cancer uk website

    good luck keep in touch via the forums if you can…..

  • Hi Johnnylond.

    I was only at Hospitial the other day discussing SCT and donor's, I had 4 possible unknown donors and one which is a match which is good news. I have finished my 1st Flag-Ida cycle of Chemo and scheduled to go back in for my 2nd cycle on Sunday (28th) after approx 5 weeks in hospital home for a week or two the SCT transplant mid March. I also got given the book on Blood stem cell and bone marrow transplant.

    Hope the Chemo was not to bad for you and the blood count soon comes up, must admit after the Flag -Ida it took longer tan any other of my Chemo treatments.

    Thanks for the advice and good luck with the SCT and yes will update eon here when able.

    Stay positive :-) 

  • Good news  do remember about our dedicated Stem Cell Transplant support group as there are many folks from many blood cancers including AML are part of the group.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike,

    Thanks and yes good news Thumbsup

    Yes I remember and have joined SCT support group and found lots of usefull information on there ThumbsupBlush

    Thanks 

    Garry (Gman)

  • Hi Johnylond and G-man

    I was diagnosed with AML in July 2021 and rushed into hospital immediately.  I had a BM biopsy to confirm diagnosis, followed by 3 doses of chemo, which was not a pleasant experience and came with some nasty side effects.  However, I was in remission! They told me in no uncertain terms that I'd almost definitely relapse without a stem cell transplant.  So I was found an anonymous donor and I had my transplant in February 2022.  Here I am now, 1 year and 11 months on at the age of 70, happily living at home and doing lots of gardening, carefully: using sun block and gloves, also masking up to do the dirtier jobs.  I try to go out for a brisk walk daily too, particularly in winter when the garden is less appealing!

    The stem cell transplant process left me exhausted, lethargic and totally lacking in appetite; it was a major struggle every morning to down the array of medications they lined up for me to take.  I ran the shower to make them think I'd had a wash, but most days I was too cold and too tired and sick to bother!  I also felt nauseous a lot and was actually sick most mornings. They gave me all sorts of pills for this: none of them had any effect. I did force myself out of bed every day except for the first few days immediately post transplant when I felt too ill.  I stayed in hospital for 6 weeks post transplant. 

    When I got home the nausea and sickness continued, as did the exhaustion and lethargy.  The latter I fought - I got a step counter, made myself move, go upstairs, down the garden, then along the streets.  The former continued. Then, at an outpatient appointment, one of the nurses did me a massive favour by suggesting sickness and nausea was possibly psychological.  So I went home, telling myself she was right.  Every time I felt the nausea coming on I got up, walked around the garden, or walked round to the garage, anywhere ... I haven't vomited since and after 2/3 days all nausea had disappeared!

    I am so so grateful for wonderful, dedicated staff who looked after me and so appreciate my new life!

    Now, nearly 2 years post transplant I am still in remission but have to attend outpatient clinic weekly or fortnightly, which wasn't quite the plan.  I still have a bone biopsy every 3 or 4 months and have had problems with neutropenia, then when that was sorted with anaemia.  Then my chimerism started falling.  So now I am awaiting a cell top up, while the team continues to be baffled by my symptoms.  The request has been made and it is all in hand.  Despite this, I have had two years of a good quality, new lease of life, the slight drawback continues to be dodging any potential infections so I don't use public transport and mask up in shops and avoid crowded places.  My friends and family know they need to do likewise and to keep away if they're unwell.  

    So in conclusion my advice would be to read all the booklets you find or are given in hospital, ask loads of questions and above all stay positive

  • Hi Felicita (happiness?),

    Thank for for sharing your story\journey and good to hear you are still in remission and have good quality of life albeit with some issues, which I hope the 'top up" fixes and long may it continue.

    Thank you for the advise and totally agree especially with the 'Stay Positive"

    Please update once you have had the "Top Up'

    Take care and Be Positive :-)

    Garry (Gman)

  • Hi Felicita 

    Very uplifting to read your story and so glad you are fit and active and getting on with your life. I agree without stem cell transplant there is a high chance of relapse with chemotherapy only.

    You overcame the challenges which takes a strong physical and mental attitude. As you say there are adjustments to be made but life is precious and you should be proud. Good luck with the stem cell top up…..

    best wishes 
    Johnnylond

  • Hi Johnnylond

    It's good to hear that you have a donor lined up and are preparing for the beginning of a whole new lease of life. 

    It will be a challenge but do remember that doctors are required, for their own protection as well as patient preparation, to give a full and sometimes very detailed account  of all the things that could go wrong or might happen as a result of the process.

    Stay positive and keep busy BlushBlush