Most Recent CBC Shows Further Deterioration

[Eric King]

I was dx low risk MDS back in 2010. I’ve been watching and monitoring it with my Hematologist since.
There was a time I was anemic as well, and getting infusions of iron supplement, but that stopped in 2015.
In 2021 I started getting shots of Aranesp every two weeks to try to boost Hemoglobin.

My last CBC just shows further deterioration in numbers.
Some feedback from others dealing with low risk MDS would be appreciated.
These numbers seem pretty bad for me, but I guess there are others on here whose numbers are worse and are still functioning well. I’m just not sure what my next step is.
I’m thinking of contacting the Centers of Excellence in San Diego.
Thank you

WBC – 2.2
RBC – 2.76
Hemoglobin – 9.1
Hematocrit – 29.8%
Platelet Count – 138
Neutrophil % – 46%
Abs. Neutrophil – 0.9K/uL

[Kathie Wolf]

You sound like you’ve done well with this disease for quite awhile. My husband was diagnosed in 2016 after a gunshot wound while volunteering as a rescuer for the Sheriffs department. He has low risk meds also. Not sure if the trauma brought it out of hiding, but he went a couple of years in the watch and wait mode. Then he progressed to Procrit to bump up his hemoglobin. That worked really well initially, so well his hemoglobin got too high, so they stopped it. Eventually it stopped working and in august of 2019 he started on Vidaza. Hi hemoglobin was 7, wbc 1.6, platelets 60,000, We had gone to a couple of seminars at the Stanford center of excellence early in his disease and realized how much variability there was. When he started the Vidaza, we were also referred to a bone marrow transplant MD at Stanford. It was more to tell us what our options could be at some point, but not that we were there yet. My husband was 70 and very healthy and active when diagnosed, which per that doctor worked in his favor. After a year of Vidaza, his MDS went into remission. He stopped the Vidaza and is now a year and a half out and all labs are still normal. I would definitely ask for a referral to the San Diego center of excellence. You can also get on line and look to see when they are offering seminars. They are helpful. Good luck!

[Eric King]

Thanks Katie.
I will look up Vidaza. I’m 69 yr old. I too was on Procrit for awhile. I think the bone marrow option isn’t as viable of an option for those who are older. My Hematologist says that it’s like the cure is worse than the disease. At least while I was in the low risk category.

That’s what I need. A treatment plan that after a year has the MDS in remission.

[Roderick McCune]

Hi Eric,

Sounds like you are doing well. I have mild MDS since 2012 found on routine blood work. My numbers are as follows:

WBC:3.1
RBC:4.1
HGB:11.9
Platelet:147

I have been asymptomatic and living a normal life. I walk daily and try to eat healthy. I am thankful for each day, and I try not to think to far into the future. My oncologist thinks I will become symptomatic next May. I hope he is wrong, but we’ll see. Hope this helps and you don’t feel alone in this

Rod McCune

[Michael]

Diagnosed in 2016 at age 64. Low risk and have been on watch and wait since diagnosis.

Typical monthly blood results:
WBC- 1.8
RBC- 4.3
Plat- 280,000
Neut- 25%
Lymp – 55%
Hemoglobin- 12.7

I feel blessed not having treatment. I live a “normal” life but very conscious of potential infection. I’ve been doing the hand washing staying away from sick people long before Covid.

My hematologist calls it “punctuated equilibrium” meaning you can stay at stable levels until some event happens and then things change. After the change you begin a new “punctuated equilibrium”.

Best wishes

[Eric King]

Thanks Michael and Roderick

My Hemoglobin used to be between 10.5 and 11.5 on a pretty regular basis. RBC was between 3.2 and 3.5 and Abs. Neutrophils between 1.5 and 2.9. I agree it’s a sort of punctuated equilibrium as your hematologist says.

I feel like my numbers are resetting to a lower level. I haven’t had any transfusions or drug therapy except Procrit back in 2010 and now Aranesp every two weeks. Aranesp is supposed to help boost RBC and Hemoglobin, but so far this year, it’s not doing much of anything.

Roderick, I’d say your numbers look really good, outside of the low platelet count.
Yeah, Michael. I would use caution as well with that low WBC count. But your other numbers look really good.

I sent an email to my hematologist to see if he could provide some insights into what he sees for me down the road. I haven’t heard back yet. I realize I’m in the low-risk category, and he has patients with much worse symptoms, but it would be nice to get some communication back to address my concerns.

Thanks again for your insights.

[Eric King]

Update 1/3/2023
I was doing the Aranesp every two weeks, but Hemoglobin continued to deteriorate. I talked with my Hematologist and we thought changing to Procrit every week was a good idea.

Unfortunately, after Thanksgiving, my Hemoglobin dropped from 9.5 to 7.9 in about a month. Because of Christmas holiday, my doctor was out of office. So his back-up recommended blood transfusion, which I got on Christmas day. My Hemoglobin went from 7.9 to 9.8 after the transfusion. I go tomorrow for my blood test to see where the numbers are now.

We also switched back to the Aranesp every two weeks.
I do feel much better. Mentally and physically better.
Would it make sense to push for blood transfusion when Hemoglobin gets to low 8s or high 7s?
It seemed like it made a big difference.
Thank you.
Eric King

[Richard Wagner]

Just to share my MDS story. I was diagnosed with it in 2015 and given 1 1/2 to two years to live. I took Vidaza chemo for 6 months and quit. I did not need transfusions until 2022, and beginning this year get Procrit shot each week. I get transfusions about each week, now and may skip a week here and there. My last CBC was WBC 1.2, HGB is
7.2, and PLT 46. I am going on 8 years now and surprised my Oncologist. Best wishes to all….

[Michael Cook]

I was diagnosed with Low Risk MDS in December of 2018.
In 2022 my CBC started getting bad every check. I lived
in South Carolina and I was requested to come to UAB in
Birmingham, AL, where my MDS Doctor is, and start Vidaza.
4 rounds of Vidaza and it was getting worse instead of better.
They stopped the Vidaza and referred me to the BMT Doctor.
They found me a 100% match donor and I will be going in for the
SCT in February. I am Red Blood Cell & Platelet Transfusion dependent
at this time. HGB continues to drop to 6.9 to 7.1 and then I get a
RBC Transfusion. My Platelets drop and I have to get Platelet Transfusion.
My HGB was at 7.1 Monday and Platelets are at 15.

[jebs554]

Hello Erick,

How are you?

James

[jebs554]

Hello Kathie,

Just like to know what MDS sub type that with your husband?

Thank you!

James

[jebs554]

Hi Rod,

Just would like to ask, what do you mean when you say Mild MDS?

[Author]

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