Change in WBC
 

Hi All,
It's been I while since I been on the site, I was sad to see that Cheri had passed away. Her and I would private message each other when she first came on the site. It's heart breaking.

My mom has been battling MDS for about 10 years now, 4 years of real signs and the past 2 years of very serious health issues. We thought we were going to lose her back in January but my mom is a fighter like no other. She is now getting platelets every day (weekends & Holidays included) and they either stay in the low 20,000 or go down even with the daily platelets. She gets blood transfusions averaging about every other week. The thing that has become alarming this week is the jump her WBC count made, it has always been low needing a Neprogen shot at times, it was slowing creeping up these past couple of weeks but two days ago it jumped to 17 and blasts is showing up in her daily blood work. The Dr. wasn't willing to do a bone marrow a couple of weeks ago because of how weak she is and how low her platelets are. She sees him on Tuesday because of the concern with her WBC count.

My question is, at what number is the WBC a leukemia issue? I just want to be prepared a little for the Doctors visit on Tuesday.

Thank you,
Maries daughter, Paula

WBC
 

Hi Paula,
I miss Cheri too - she was a fighter like your mother.

You know as far as I understand we get AML when the blast cells in the bone marrow are 20% or more. We can have very low WBC for years without getting the dx AML.
kind regards
Birgitta-A

Hi Paula, sounds like your mum is a fighter! When I transformed to AML, my white cells were always low... Even before I transformed, right from my first blood test that changed everything forever, I had blasts in my peripheral blood. These disappeared during my first 6 months on vidaza only to come back later as I transformed. How old is your mum? Has she ever tried vidaza or any other drug?

Hi,

My mom will be 81 in December. She is a fighter like no other and is such an inspiration to all that know her. Her WBC are now at 20, hemoglobin just went down to 9.2 after a blood transfusion on Saturday and her platelets are down to 18,000 (platelet transfusions are done daily). Her breathing is very bad. The nurse said it's fluid retention from all the transfusions. We see the oncologist tomorrow. I'm so nervous on what he is going to say. My mom is now a nervous wreck as she can feel that this isn't going in the right direction.

Sorry I forgot to mention that yes, she was on vidaza. She had vidaza years ago, it didn't work for her. She also did a trial of Onconova, that seemed to keep things at bay, but then that stopped working. She also do the revlimid with vidaza up to December 2013, but had to stop because she got very sick. Being that she's been weak, she has only been maintaining with transfusions.

Paula

Well, I spoke with my moms Dr. today. I wanted to be prepared for our visit tomorrow. He said that he believes she turned leukemic. Her blood work is showing her WBC as 20,000 and her blast is at 20. He will give her three options tomorrow. A chemo pill (to help raise levels), maintenance (which she is doing now) or Hospice. Tomorrow will be a rough day.............. It's just so sad.:(

MDS
 

Dear Paula!
How sad that your brave mother's counts are worse and that she is getting weaker. Hope she will feel better when she has decided the option she thinks is best for her and is getting that treatment.
Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 2006. Tx dependent from dx with severe bone marrow fibrosis. Supportive therapy until 2010. Positive response three years on Thalidomide and one year on Revlimid. Now started txs and Neupogen injections for low WBC.

Yesterday her WBC count was 23,700. My mom chose to go with the oral chemo. She is just not ready to give up......... BTW, the doctor (who I absolutely love) doesn't speak clear, he mumbles his words and my mom doesn't hear well (not a great combination) so she didn't hear that she has AML, she heard its turning into AML. We didn't realize this until after we left and we were talking. She said, "I have to do the oral chemo to keep it from turning into leukemia". My dad and I just looked at each other. We didn't have the heart to set the story straight. Her top number of her blood pressure was 194 and her oxygen level was 82. We didn't want to upset her any more. Do you think this was the right decision?

Counts
 

Hi Paula!
In this type of questions there are no right or wrong answers. As we know hope is very important and in many cultures the doctors don't tell the patients their cancer dx because they don't want them to loose hope. Many patiens (like Cheri) fight AML for years.
Kind regards
Birgitta-A

Hi,

I just thought I'd give an update on my mom. She ended up in the hospital with congestive heart failure. She was in the hospital for about a week, and is stable now. They also told us that she has chronic kidney disease (probably from all the meds shes been on all these years). The Dr. started her on an oral chemo pill called Alkeran. He's not optimistic, but she wants to try it.

The other day she started bleeding heavy in her urine. We aren't sure what this is from. The Dr. said it's not from the new chemo. So it can be from low platelets or her kidneys. Tomorrow she is getting a platelet and blood transfusion then will go for a sonogram.

One a good note........ she had her platelet transfusion this morning and now she is at Parks Casino doing what she loves!! :)

Will keep you all posted as we go on.

Have a good day all.......... Keep the faith!!

Paula

Alkeran
 

Hi Paula!
I admire your mother who still is doing what she loves.

Alkeran is a common anti-cancer drug with the same adverse effects as other chemo like supression of the bone marrow initially with low counts.
Kind regards
Birgitta-A