Recent diagnosis- any info /success stories?

Hi Angel82 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.

I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different...... I most definitely appreciate the challenges of this journey rather well.

Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

As for your rights with regards to work and finances you may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a few people with AML in it so worth checking.

Always around to help more or just to chat.

Hi Angel

so sorry you’ve been diagnosed with aml, it’s a very frightening time. I was diagnosed six and a half years ago,suddenly with virtually no symptoms . I was 61 years old ,actually had my 61 st birthday in hospital. I was very poorly when diagnosed so was unable to have chemo for 3 weeks. Eventually they started treatment, I was on the aml 18 trial. Fast forward the summer of 2018 three rounds of chemo, 10days, then 8 days then 5 . I was discharged in October but unfortunately relapsed 5 months later and went onto have a bone marrow transplant in May 2019, another birthday in hospital. It was a tough year following transplant but now life is pretty much back to normal. Hope all goes well with your treatment. Feel free to message me if you wish.

Mark

Thank you Mark, 

That is very uplifting. I know it won't be easy, but to know there are success stories is very positive. 

Appreciate you sharing with me. 

My daughter was daignosed on boxing day last year.  After 4 rounds of chemo (including gemtuzumab daunorubicin cytarabine protocol) she was in relapse after round 2, and it continued in round 4...  hers were favourable genes too so fingers crossed for you.  The last couple of blood test shave been good.

it's hard to know what to espect, but she had quite a few PICC line and other infections (sepsis) due to no neutrophils....keep an eye on your body and mention any changes to your nurses and consultants.
She finally got released from hospital in June, so spent the great majority of her time in hospital from December... ended up in ICU for a week or so too.  She was only 26 at the time.

hi Angela82

i had 7 rounds of chemo and hit remission after first. monitored for 6 years an im now 15 years further on. its been tough and i have chronic pain every day but it can be beaten. 4 course hickmann line and 3 course intertheacal.

good luck..

daley52

Hi Angela

i was diagnosed aged 45 fit and healthy but showing a rash similar to chicken pox. 7 rounds of chemo over 5 months. monitored for 6 years and classed as cured in 2015. i suffered chemo damage which i struggle with every day and had to take early retirement.

i have never met anyone with chronic rectal pain like it left its mark with me. 10 operations later and still asking for solutions to ease my condition is rare. almost everyone else with the illness seem to have been luckier than myself and lead an almost back to normal happy  life.

cant understand you been left 2 week to formulateba plan as i was diagnosed on a tuesday and having my first course 45 hours later- i was at that stage 42% leukaemic at the time though and had been on sick leave trying to get well as it had taken my GP 6 weeks before he decided to try a blood test ! so maybe your one of the lucky ones and its relatively new in your system ?

good luck on your journey.