New Member – Low Risk MDS

[Eric King]

Hello
I was diagnosed with MDS back in 2010. Doctor has said that mine is a low-risk type. We’ve just been monitoring blood tests. Initially 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’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.
What I want to know, is what’s next.
The numbers are steadily declining. I’m hoping to get some guidance as to some If/Then scenarios.
If this number drops to X then we should consider this, and
If this number drops to Y then we should consider this.

If someone here has experience with this deterioration of a low-risk MDS, I’d sure appreciate some insights.
I don’t know how bad these numbers are compared to others.

SWM 66yrs old.

Thank you again for your insights and support.
Eric

[Roy Powell]

Eric: I am considered low risk also but have only had this for about a year. HGB is high now on Revlimid at 14 and wbc and rbc are both 4.0. Plt is only 89K which is low. Having had this for 8 years is low risk for sure. The Docs gave me 4 years.
I have been told that this is not a terminal thing for everybody (NIH) but there seems to be no way to tell who will outlive it. If Revlimid fails as it does for some after a period then there are other options that a Doc can use. Would like to know what you come up with down the road … sorry I can be of no more help…

Roy
82 yrs.
MWM

[Chris Ballmer]

Eric – What’s going on with your doctor? Are they MDS experienced? If I were you I’d find someone who specializes in MDS or at least has treated as many MDS patients as possible. Their experience will be invaluable to track you, and to give better input rather than just ‘my numbers went down to 10 and so I went on a different drug’. Nothing is in a vacuum, and with less experienced oncologists you will possibly miss something important. So… Your life. Your responsibility to get as many opinions as you can ‘afford’… unless you can afford NOT to have the best care?

[Eric King]

Thank you for your feedback. My Hematologist/Oncologist indicated that if my Neuprophils drop below 1200 than he would consider starting me on Vidaza. I’m going in later this month for a second opinion from another Hematologist/Oncologist who had previously treated me for my Anemia with Procrit back in 2010. I’m pretty comfortable with both of these Hematologist/Oncologist and their experience with MDS. Again, I’ve been lucky.

I was initially diagnosed with MDS and Iron Deficiency Anemia in 2010, so it’s been 9 years now. The “monitoring” has been good, but obviously my Neutrophils are declining and Hemoglobin last month was down to 10.5.

I have thought of getting an appointment at the Mayo Clinic in Phoenix. My concern is they may had the attitude that they have to do SOMETHING since I’ve traveled all that way to see them. They don’t want to just repeat the idea of monitoring the blood tests until they decline to a certain point. And I don’t know if I want to do something just for the sake of doing something. Has anyone gone to the Mayo Clinic in Phoenix? Wonder what their experience was like with Low Risk MDS.

I’m really in a confused state and your constructive perspectives and experiences in this arena are very helpful.

Thank you again for your comments.
More comments are always welcome.

[stacey]

Eric,
Couple of questions:
1 – Are you getting all your labs done at the same place?
2 – Were you sick this past month (between Jan->Feb) that it could have affected your counts?
3 – Do you have a script to go on your own for March lab work soon to check if your HGB is going to bounce back?
4 – How do you feel in general (out of breath, tire easily, more colds than normal, or relatively fine?)

I had Procrit shots a long time ago (about in 2004), which gave me a short-lived boost it seemed in HGB too.

I’ve also had Neupogen shots for a lowered Neutrophil count, the last threshold of which was a shot if my Absolute Neutrophil Count (ANC) dropped below 1000. One time, maybe 2 or 3 years ago, I had a fluke ANC of in the 600’s out of the blue, and I don’t know why that happened, I felt ok, and I called my doctor who said we will monitor it. The next month, it came back up. So, basically I am surprised they are using 1200 as a threshold if you are not getting sick any more often than normal. I’m also wondering if a Neupogen shot is an option for you. I would see a boost in Neutrophil count after I got just a single shot. Maybe you could ask your doctor if that would ever be a possibility for you and factor in the cost, because I don’t remember how much it costs.
-Stacey

[PATRICK CAMMARANO]

Eric. I’m not writing you to frighten you? When your HGB goes to 7 or 8 your doctor will be sending you for blood . I was getting 2 units every 2 weeks that was in 2004 in 2006 I was put on Revlimid and have been drug starting my 13th year and I have live a normal life. I am 81 go to the gym 2 times a week.
You should have a BMB and a fish test. Have that test done at the Mayo and if you real want to be sure of the results send that valuable marrow to a second lab. You have to start with a BMB. I am not sure you have had this test done? The Mayo is one of the best. The Moppet Inst. in Tamper FL. has the largest number of MDS Patients in the USA.

[Richard Macgurn]

Eric, Patrick & Stacey
Hello I’m recebtly diagnosed medium risk MDS, first in Costa Rica then Piper CAncer Center then Mayo Clinic. Originally I was called high risk with 10-15 blasts, but last two BMB show 2% or less blasts. In Costa Rica I got a transfusion of Red and Platelets. Also a few shots of nupogen as my WVC are sub 1.3 with almost no neutrophils. Last test at mayo hemoglobin 9.8, hematocrit 30%, neutrophils .26, leukocytes 1.6, lymphocytes .86 and the rest all below minimums. Yet no fresh blood for me. With two chromosome issues 12p and 20q, and all three blood lines severely depressed I’m medium risk. Also BMB showed moderate fibrosis in my bones?

I’ve been offered Vidaza (3-5 years if hekp they say), and Mayo a stem cell transplant but so far done nothing more than diet change and tons of suppliments and cancertutor remidies.

My issue is I’m a single 66 yo dad with a 7 year old son raising alone. I’m trying to find a solution to get him to 18, than it’s up to god.

Have any of your tried any alternative things like Vit C, layatril, Gc-Maf, ozone etc? Mayo has me on a monthly blood review but has done the genetic match to look for donors. They told me 50/50 I’d make it as the odds for over 65.

Also these last weeks my weight has been dropping more was 192, in sept ‘18, now 176. Yet I’m eating a lot at least as much as before just wat more green veggies, no pasta or bread or sugar and sweets. Exercise was 4x a week at gym now it’s 2x at home.

Richard M
Phoenix Az

[Chris Ballmer]

Hi Richard:

Wow, you have your work cut out for you. You can do this man! I’m 51 and my kids are grown and gone, but kids are resilient and the legacy you give to him will carry him so be strong for him. He probably won’t realize a lot of the details, other than he will remember how you showed him love. Maybe start looking for other ‘family’ and better alternatives than public agencies too. I’ve been learning that being healthy, eating pure food, meat, salads, supplements is all helping me both physically be resilient and mentally stronger to do what needs to be done at home. I’m also looking for a donor, as I’m intermediate and blast count rising (for now). I’m resigned that this MDS doesn’t really remiss. I’m going to give it a good run though, but live each day best I can, and not be consumed with medical issues. I tried but realize that our western medicine, cancer research, is the best we have right now, and use whatever you can and be aggressive with doctors. I don’t believe nutrition will heal this cancer, and I tried, and my counts are going down. But that’s me. Good luck with whatever you decide, and stay strong for the prodigy… every day is precious. If you want to pm me, i’d be happy to talk with you.

[stacey]

Hi Richard,
Sorry I can’t be of more help, but I have never tried any alternative medicines.
I’ve only had Procrit shots, Neupogen shots, 10 or 5 mg Revlimid capsule, or have taken a break from medicine.
Hoping someone responds soon who has tried one of those alternatives you mentioned.
Take care,
-Stacey

[Richard Macgurn]

Hi Chris
Don’t seem to see how to send a PM? Do you mind if I ask when you were diagnosed? Where were you blood levels then and now?

Besides a clean healthy diet did you try anything else?
Thx
Richard

[Chris Ballmer]

Hi back Richard: feel free to call me 805 448-8278 any time.

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