Hello just was looking information if anyone knows or has experienced this.
My partner is in her 30s. She had breast cancer 2 half years ago beat it and all was great but has now been diagnosed with Aml Lukemia.
The Lukemia is treatment related.
She started off with the normal 10 day induction chemo. It was very tough on her and after for 2 weeks she kept getting really high temperatures each night 38.5 -40 and was sick cudnt sleep sweats each night. They could never find any infection and as bloods were very slow to come up they did the bone marrow test early. From the test it showed the treatment hadn’t work great at all. Not sure exact numbers.
They then started straight away Flag IDA for 5 days. She’s now on day 15. This time the treatment hasn’t been as severe on her but she started to get couple slight themperatures last couple evenings 37.6 37.8. Just really worried that the flag therapy mightn’t work. Has anyone been through similar to this or has anyone been through flag IDA and could tell me about the side effects and how it worked for them? Also is it normal to get blood and platelet transfusions basically every 2nd day.
Thank you for anyone that could help.
Hi and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear about your partner.
A blood cancer diagnosis and journey can bring a lot of stress on a family but talking with people who are on the same journey will help a lot.
I did not have AML but a rare type of Lymphoma but do understand the challenges that your wife is facing.
There are a number of folks who have had Flag Ida and this has mostly be used to get them into the position of going forward for a Stem Cell Transplant - has this been mentioned?
The issues she is having sound to be normal side effects but as long as her team are in control and know about any issue that are appearing they can deal with them.
I am sure that some of the AML folks will pick up on your post and help you out with their first hand experiences.
We do have our ‘Ask an Expert’section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
Our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
It is worth putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.
We are around to help out as best as we can,
Thank you for this and just what I thought.
Could I suggest that you also go over to our dedicated Stem Cell Transplant Forum (SCT) where you may well meet others who have been through Flag Ida and moved onto SCT.
I have been through two SCTs with Stem Cells from my brother as this was the last remaining treatment route available for me and so far so good.
My story is rather complicated but my team could not get me into remission but we rolled the dice and went for it.
