I’m really hoping you guys will be able to help. My partner who is 34 was diagnosed with AML with 20% blast cells. He has the T8:21 inversion.
The first course of chemo was cyatarabine which was unsuccessful. He was then put on daunorucibin which bought his blasts down and it was combined with cladribine and it stopped the daunorucibin from working and his blast cells went to 72%
He was then given the option of a trial drug; daunorucibin with gliteritinib but treatment of this was delayed becaue he developed an abscess and had to have emergency root canal treatment.
So finally he has the new combo chemo last Monday and had a blood test on the Friday. The results came back and his blasts are now at 81%
We realise they could have been much higher than this prior to the new chemo but have been dealt a devastating blow; if his blasts don’t come down at the next treatment which is due early next week, he only has weeks or a month at best.
I could really do with some advice right now; he’s in a terrible place and we’re struggling to comprehend this. Any advice would be a ray of light in these dark times
Hi, welcome to our community forum, you must both be in complete shock and on the medical whirlwind. I cannot help you medically I am afraid, but we are all here to support you both and give you a place to share all your fears, what if’s, thoughts and feelings. What I have found so often on this site is that, no matter what the situation or the relationship to the condition is we do all share those fears, what if’s, thoughts and feelings and the darkest hour is just before dawn.
The Bloodwise support line is also there to support you and is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. I can only say from personal experience that communication seemed to be the key, you are probably both thinking the same things. Take lots of special care of yourselves, keep posting and have the odd treats.
Hi. I am sorry that you and your partner are having such a difficult time. Like Erica I have no medical knowledge, but she has given you information about their support line. I would also point you towards the patient information on the Bloodwise website, where you can find information which you can download or ask for a hard copy, on specific topics like AML. Look after yourselves, and know that we are here for patients, carers, and all affected by blood cancer.
I am so very sorry to hear what an incredibly difficult time that you and your partner are going through. I can only imagine how worrying it must all be for you. Have you got much support around you from family and friends at the moment?
Would it be helpful to talk this through with our Support Line team at all? If so, I can ask them to give you a call today - just private message me with your contact details and a good time to call.
Otherwise, you can call us anytime on the details Erica has provided above, support@bloodwise.org.uk or 0808 2080 888 between 10am and 4pm.
We’ve got everything crossed for your partner. Take care
Kate
I’m sorry, another one here with no medication advice or experience with AML. I’m sure someone will be along soon who can help though. Just wanted to welcome you to the forum and wish you and your husband all the best in what I’m sure is a scary and frustrating time.