Misdiagnosis — MDS really AML

[PupsRule]

I’m in shock right now. RBC and platelet transfusions haven’t been taking, so my local onco checked with Stanford (who’s been searching for a donor match for me) to find out why. Turns out Stanford took the results of August’s BMB and their own early September labs of my blood and decided I’ve got AML. They never bothered to tell me or my onco here. So the past 3 months of Vidaza treatments for MDS have been for naught, not to mention the wasted time.

I’m off to Stanford tomorrow to find out what treatment is available. We’re hoping there’s still time.

[BethW]

Dear Judith,

I know you must be so upset. Anybody would be. We will be thinking of you and hoping things go well at Stanford. Please let us know how the doctor visit goes.

Take care and you are in our thoughts and prayers,
Beth

[LynnI]

Hi Judith,

Being shocked and frustrated must be an under statement. I hope you recieve better news at your appointment.
Please keep us informed as we are concerned for you and thinking of you.

Take care,
Lynn

[PupsRule]

Thanks for your kind thoughts!

Stanford’s Hematology Dept. senior doctor told me this a.m. that I’m just over the borderline between MDS and AML (subtype M6, aggressive and nasty). He thinks that because I look and feel well that the Vidaza has had some good effect, and he wants to analyze a bmb before deciding what’s next. The biopsy will be scheduled for next week. If the Vidaza IS having a good effect, then he’ll recommend I stay on that until a bone marrow donor is found (which the Transplant Dept. has been working on since mid-September). If not, then it’ll likely be a 30-day stint in the hospital for induction chemo.

Apparently there’s a problem finding a good HLA match for the platelets, which is why they have no staying power. This may require daily transfusions at some point — we’ll see.

Jim (my most excellent husband) and I are staying optimistic, and plan to have a fine Thanksgiving day. We hope you and your families will do the same!

[LynnI]

Hi,
I want to start by saying I am pulling for you, I know you must be scared and frustrated at this time.

Having said that, I viewed your website, wow, very talented lady you are. And so pleasing to see that you do animials, espeically dogs!!
I am very much into animals as well, especially dogs, horses and cats. Although I don’t have a indoor cat at this time anymore, I just feed and care for the strays that come to my barn.
I compete with my dogs in many events, espeically agility which I am completely addicted too.
Granted running (or trying to run) agility with a fast dog when my HGL are low isn’t easy but we still go out and have fun.

Take care and thinking of you.
Lynn

[PupsRule]

Lynn — Thanks so much for your kind words!

[jaxem]

Hi, Judith
I hope your Thanksgiving was good. Gotta have a lot to eat to grind down those bad M6 cells. M6 is very rare & I am praying that you find a donor. Any siblings that will match? Don’t forget that you need at least 4 (6 is typical) doses of vidaza for any real impact to the M6 AML. Keep us up to date on the BMB data. Good luck to you!

[PupsRule]

Hey, Jack — No siblings as I’m adopted, but Stanford’s found 2 potential matches (9/10) who they’re following up with. Appetite is pretty much shot but more from psychological factors than physical. (I had a few pounds to lose anyway, but this is one heck of a weight-loss program.)

We’re still not 100% sure that the 2 blood analyses have diagnosed me correctly since they’re both different. After this Friday’s bmb, we’ll evaluate whether to seek a third opinion — probably at Fred Hutchinson in Seattle.

Meanwhile, I’m feeling pretty well and marching forward!

[jaxem]

Judith
Great news about the donors! Hutch is a great place & I am glad to see you go there. Best 2 out of 3 gets it! Or if you get a 3rd analysis, get a 4th opinion.

[PupsRule]

The donor news is non-news as it turns out. In speaking with Stanford yesterday, I was told that the 2 donors haven’t even been contacted since they’re only a 9/10 match. Stanford’s looking for a 10/10 since my apparently unusual blood requires 100% match for a more successful outcome. (I’m starting to feel that I am the product of aliens, sent to Earth for as yet-unexplained reasons.) Still, I’m staying positive and proactive because it’s the only way to confront this disease head-on. I’m meeting up with my transplant doctor in 2 weeks.

[Author]

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