New Member - Low Risk MDS

[Eric 53]

Hello
I was diagnosed with MDS back in 2010. My Hematologist said that mine is a low-risk type. I had to switch to a different Hematologist in 2017 because of insurance limitations, but I'm now on Medicare, so I'm going later this month for a consult with my old Hematologist.

We’ve just been monitoring blood tests. My Hemoglobin was low, around 8.7,when I first saw him in 2010, so I was getting shots of Procrit. But that was back when the criteria was Hemoglobin less than 12. I would be around 11.4 and get a shot and it would boost my Hemoglobin above 12 where it would stay for a few weeks then trend down again. And I’d get another shot. Then they changed the criteria to Hemoglobin below 10, and since then we haven’t done anything for the MDS as my Hemoglobin is never below 10. It dips down then my weak bone marrow finally kicks in and I get the next results and it’s around 11.2 and I’m good to go again.

I was also very anemic, and would need iron infusion therapy to add iron. I would get Venofer. My body wouldn't absorb iron, so the only way I could get it was with infusions. And then it would drop, and I'd need more infusions every two-three months. Then in 2015 it stopped and I was absorbing iron again. I haven't needed an infusion of Venofer since March 2015. My Ferritn levels are around 150.

I’m concerned that my results in February 2019 were the worse I’ve had in years.
Here’s a chart showing recent results
Test Jul-17 Jul-18 Nov-18 Dec-18 Jan-19 Feb-19
WBC 3.7 2.5 2.9 2.7 2.9 2.4
RBC 3.42 3.51 3.39 3.34 3.49 3.1
HEMOGLOBIN 11.5 11.6 11.6 11 11.5 10.5
NEUTROPHILS 2464 1490 1839 1658 1769 1481
LYMPHOCYTES 659 673 664 664 728 564

Like I said, we’ve been doing the wait and monitor since 2010.
But the February numbers of 10.5 for Hemoglobin and 1481 for Neutrophils and 3.1 for RBC are low for me.

My current Hematologist said that if the Neutrophils drop below 1200 then Vidaza would be recommended. And if the Hemoglobin drops below 10 I could get a shot of Procrit.

I've been lucky with this low-risk MDS. I haven't needed any significant drug therapy. Though I do wonder if my numbers continue to decline, what's next for me.

Thank you for being here.

If you have any insights or experience with this low-risk MDS and how your progression and therapies have unfolded for you, I'd sure like to hear your insights. Especially in way of drug therapies that have worked or not.

SWM 66 yrs old.
Sacramento, CA

[Cheryl C]

Hi Eric. That is a bit of a drop over the last few months isn't it. I would see what your numbers are this month and if there's a further drop or stabilisation at the lower numbers, then try and see your haematologist. Over the 7 years I've been on W&W I have had the occasional drop for a while and then things have come good again, tho usually not quite back to where they were. It's so important to monitor your own results as I find that haematologists have so many patients that they naturally tend to focus on those who are seriously ill.

Keep posting!

[Hopeful]

Hi Eric,

If your insurance allows (or even if doesn't), you should go see Dr Jeanna Welborn at UC Davis.She is the absolute best in the Sacramento area, in my opinion. She is very knowledgeable, passionate, and caring and is well respected in the MDS community. Dr Jason Gotlib at Stanford is also excellent. Even if you do just a single consult with one of them, it could open up the lines of communication with your current doctor.

Be cautious about starting Vidaza unless you are planning to go to transplant. Once you start, you must continue until it stops working. So be sure of your diagnosis and all of your options before you start on that route.

Have you been considered for AA? Have you had a recent BMB? Do you have cytogenetic abnormalities or significant dysplasia to get the MDS diagnosis? Do you know the sub-type of low-risk MDS, as some are more responsive to Immune Suppressive Therapy (IST)?

Do the doctors know why you body can't absorb iron?

[Eric 53]

Thanks for the insights.
We never did figure out why I wasn't absorbing Iron. In June 2015 my Ferritin levels stabilized and I haven't had Venofer infusion since then. And Ferritin has been stable for close to 4 years now.

I'm going to see my Hematologist from Sutter end of this month. I'm going to get my monthly blood test next week, so I'll see how my Hemoglobin and Neutrophils are doing. It seems I may have to spread myself to additional doctors to see what ideas and options are available to me.

I agree that I want to hold off on Vidaza for as long as reasonable. My current doctor with Dignity suggested that, and I'm a bit concerned that Vidaza is sort of a first option without considering other options. With Neutrophils at 1480 in February, I'm still a few months away from being eligible for therapy to boost WBC and Neutrophils.