Mother with CMML2

[ckurtz]

Hi everyone,

My mother had a heart attack on her birthday in August 2018... then shortly after was diagnosed with CMML2.

Anyone on here have CMML2?

She is not a candidate for Stem Cell transplant due to heart function being damaged from the heart attack, they feel she would not survive the host-graft disease.

She has been on Vidaza chemo injections for almost TWO years now which i can't believe. This year her doctor bumped her to every 6 weeks (instead of 4) and 5 days (instead of 7).

Unfortunately we got the bad news on Monday that her numbers have dropped again and she is unable to get the Vidaza. Numbers of concern are;

WBC 1.6

RBC 3.74

Hemoglobin 12 (still normal but dropped)

Plateletes 109

Neutrophil % is 15.8%

Lymphocyte % is 66%

Neutrophil is 0.25

She is scheduled for a bone marrow biopsy in two weeks and then a follow up two weeks after that to discuss results and next steps/plan.

Can anyone give me any insight... is my mom's CMML2 back and is it downhill from here? I'm not ready for the rollercoaster ride... i'm a single mother and an only child and my parents are everything to me...

Is there any treatments that could be an option for mom as it seems Vidaza is no longer working...

Thanks and much appreciated!

[2003UK]

Hi, unfortunately I cannot answer any of your questions, What did really come over was your fear and anxiety. I think it is often worse being a family member as perhaps you feel so helpless as well. I think a medical person takes so many different factors into account, as you have shown, when making a medical diagnosis so our blood counts are only one factor. The waiting is always the worst. Please look after yourselves and have some treats. We are here to support you and the Leukaemia Care Charity helpline is open Monday - Friday 8.30am until 5.30 pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444.

[ckurtz]

Thank you ❤️🙏🏻

[Jm954]

Hi there,

a bone marrow biopsy is the right thing and from those results the doctors will know what is happening with your mom and how to treat it.

This is the Leukaemia Care information booklet about CMML which might be helpful to you.

media.leukaemiacare.org.uk/...

Best wishes to you both

Jackie

[ckurtz in reply to Jm954]

Thanks so much!!

[Jm954 in reply to ckurtz]

I hope you've got some answers for your mom now and a plan. Let us know how things are

Jackie

[ckurtz in reply to Jm954]

Hi Jackie,

We found out last week that mom’s CMML transformed to Acute Myeloid leukemia... they’re waiting for the gene testing to come back from bone marrow biopsy before starting the induction chemotherapy combination Dacogen (IV) and Venclexta chemo pills (daily). The dacogen will be 5 day cycle in 28 days. They also put her on antibiotic, antiviral, antifungal, and some other meds.

They said one year at most left

[Jm954 in reply to ckurtz]

I'm sorry to hear that, it was what I was concerned about as that can happen with CMML.

I hope her treatment goes well, that you have many more happy days and can make lots of good memories with her.

Wishing your mom and you all the very best, take care

Jackie