TEST RESULTS ARE BACK, NOW WHAT?

[chuckk333]

Yesterdaymy wife and I went to hear theresults of the tests of the BMB and Chromosone study. They are as follows: (CBC results are K/ul unles noted)

WBC=1.5, RGB=3.8, HGB=14.2, MCV=108 FL, PLTS=64 NEUTROPHIL=0.2 Chromosome -7, -20

The dx is Refractory Anemia (RA) with multilineal dysplasia. No circulating blasts.

All this did not sound too scary, since I am symptom free and continue to be active, Then the cytogenic study results came in and were not encouraging. -7 and -20. Tatt are indicative of a righer risk of progression to evert leukemia and or AML.

What does your experience show with a dx llke that and what do you all recommend? My doc says do nothing as long as symptom free. ie., continue to live life as if you did not know all this.

[Suzanne]

Sounds like good advice. That is about what they did with me even tho i had a high risk diagnosis to start with. They just watched my counts but went into high gear when I went into AML. At that point there wasn’t a question of taking much quality time away from me. Good luck- hope you get s lot of skiing in before you have to think about any treatment.

[eve]

my dad did a wait and see with only procrit shots until he started to need txs regularly -then he started vidaza

eve

[g-masews]

Your counts are almost identical to my husbands, only his HGB ranges around 11 -12. His diagnosis is the same, and also no blasts. He was dx a year ago May. His dr. pushed hard for a transplant, we opted against it at this time. Oh yes, he has at least 3 chromosonal abnormalities (which is considered complex, with the most adverse prognosis), one of which is a -20, and also +8. He never has a sick day, and lives his life with his normal routine every day. We scuba dive regularly, travel, and enjoy our 8 grandkids. He receives no treatment at all and usually doesn’t bother getting his blood counts done but every 5-6 mos. Because of his low white counts, he washes his hands frequently and sees a dr. if he should show any sign of an infection, but that’s it. We both know, this will not go on forever as it is, but we give it very little thought. By the way, he’s 55 yrs. old, so at 78, I say “go…enjoy…do whatever you want and deal with each thing only when you have to. Your dr. sounds smart.

[Neil]

Hi Chuck,
RA is one of the better classes of MDS for one to have as long as your counts hold particularly HGB and RBC . Suggest you keep track of all of your counts and if you see a long term downward trend it would be wise to discuss some options with your doc.
Being symptom free is a huge plus!!
It is pretty rare for RA patients to progress to leukemia. I tend to avoid crowds, particularly during the winter. Eat a healthy diet (low fat , low carb), avoid alcohol and exercise as much as I can tolerate.

[chuckk333]

Neil.

You are one that is closer to my age (I will be 78 next month) and that is a comfort. I am encouraged by your posts as it seems that you have had MDS for some time and are still doing well and seem quite knowledgeable. I suppose it is from a lot of research over the years. Being so new to the dx, I am still looking for as much info as possible and feel as if I am just touching the surface. How long did you go with a normal life after your DX and before you began treatment? How did you happen to be suspect of having the disease?

When I re-read my BMB report I see that they are reporting “many ringed sideroblasts are identified”. Doesn’t that sound like RAEB rather than RA?

I have kept my CBC results on file for 15 years and have always had lo WBC count, but in May my reg doc saw a trend and sent me to the Hema doc. We had the BMB and Chromosome study and here we are.

Thanks again for your posts.

Chuck

[Neil]

Hi Chuck,
I absorbed most of the info from corresponding with and talking to other patients. Attended 2 MDS conferences and listened to doc provide the most recent info on treatments. Spoke to many other MDS patients and had the opportunity to compare notes.
There is a lot of new info out there now. Most of the material I got in the past is obsolete. It can be a challange trying to keep up with advances.
My life changed dramatically just after the dx. But after a few months I was able to get my situation into perspective and return to as normal a lifestyle as possible.
Even though my counts declined a bit and platelets declined more I have still been asymptomatic. This has been a very fortunate circumstance. Procrit and Aranesp have really helped with the red counts!
I plan to continue with no changes till that time when my counts dictate a new approach is necessary.
Most of us with a 20q- have a good prognosis. I also try to lead a healthy a lifestyle as possible. Exercise, diet, careful driving, caution with power tools are all part of the routine.
Can’t be sure about the RA vs RARS classification. Depends upon the number. Sideroblasts appear to be normalcomponent . Ringed sideroblasts are another matter. If they are present a patient wolu have RARS.

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