New diagnosis

Hi Bernadine 36  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the 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.

You can also do a word search using the search tool  near the top. Put in Cytarabine and/or Venetoclax then select 'anywhere' and this will bring up the older posts and as always you can hit reply and see if the members is still using the site.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

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 most are online at the moment….. the one I attend does have a person with AML in it so worth checking.

Always around to help more or just to chat

I had this combination for 18 months, also did my chemo at home, I understand  the feeling of isolation, it felt as though my world had become much smaller. However that combination along with 2 round of intermediate chemo which I had this year  did get me into remission, am now about to start maintenance chemo, so hang on in there, wishing you well

Did you have 18 cycles of this treatment? I am on my 3rd round of chemo. Am finding it hard because the drugs make me feel fatigued. I am home but my life is very different 

I had 10 rounds which were constant, 10 days of cytaribine and venetoclax, then just venetoclax for the rest of the month. After those I had a 2 week break in beween  cycles until last Dec, since then I have had 2 rounds of intermediate chemo  for which i was an in patient, 1 round in Jan and 1 in April.It is really hard going and a roller coaster.My life changed considerably, I was still working even though Im old, and travelled a lot because of work, so to be "locked down" when the rest of the world was opening up was very very hard, especially as I have a Son and his family who live in the USA, I didnt see them for 3 years, so I really do understand how life changes.I feel that being a part of a group like this really does help. I wish you well in the journey that we didnt choose to take, I think over time it does get better, I found the first few months the hardest re fatigue etc, but dont fight it your body needs to heal

Appreciate your reply. I am on a similar regime. Good to know it might get easier. As you say you can’t fight the effect the drugs.

I found after the first 3 rounds it became easier, Please do let yr team know if any meds they give you for side effects dont work, it happened to me re nausea meds, eventually the right one was found for me, then things became easier

Hi Bernadine, are you on low cytarabine?

How long were you all together on venetoclax? 

Hi, I was diagnosed in April. I’m on venetoclax and azacitidine, but I’m having to have several weeks between cycles as the venetoclax is making me severely neutropenic, so I’ve only managed 2 rounds so far, but was in remission after first round. Good luck with the treatment

Sorry for not replying but I was having trouble logging in.

i am in venetoclax and low dose cytarabine and have had last 2 cycles stopped early because they are making me severely neutropenic. I am on gcsf injections to get my wcc up so I can start again.