Confused about marrow results MDS RAEB-I

[Sarah.P]

I need some help and I can't seem to find the info online so I'm hoping maybe some of you here can help me.

About 6 months ago my dad was diagnosed with MDS. They told him about 5 months ago that it's MDS RAEB-I with excess sideroblasts (sp?) and that he is very high risk. They gave him about 2 years IF the chemo works but if the chemo doesn't work then as soon as it turns into AML he will only have up to 6 months. This is what the Dr. told me while trying to explain what was going on with my dad. They started chemo right away. He's been doing 5 days on every fourth week. I'm not positive what the chemo drug is though. I'm sure you've all figured out already he was extremely anemic when he started the treatments and he was having a transfusion at least twice a month. After the second month of chemo his anemia started getting better and he started having more energy which was wonderful! By the end of his third treatment he wasn't anemic anymore but his WBC were still very low. At the end of the third month of chemo he was given this shot once a day to help increase his WBC and it worked wonderfully for a month. Last month his WBC was low again.

Here's where the confusion comes in. His last marrow biopsy before he started chemo his red, white and platelets were extremely low and he had excess sideroblasts (sp?). He just had his four month biopsy and was given the results last week. The Dr. didn't say what our next course of action is and since I'm not there when he sees the Dr. I can't really ask questions at the appointment. The results of his biopsy last week stated that his red, white and platelets were very low again but now he has almost no sideroblasts. They made scheduled treatment for his anemia and said nothing about the results. All they did was set up his next round of chemo.

My question is: Are the results for the biopsy good, bad or insignificant? Is it good or bad that he went from one extreme to the other with the sideroblasts?

It's so hard to find any good info on MDS just making it so much harder and more stressful being so far away when he needs me the most. Any and all help is greatly appreciated!!! Thank you!!!

[Sarah.P]

I also forgot to say, he can't have the stem cell transplant because he too sick from so much other stuff so they said chemo was our only option.

[Chirley]

Hi, are you sure it's sideroblasts and not blasts.

If it's blasts, then dropping to almost none is a very good thing . If it's sideroblasts, I don't know what it means. It seems as if that would be good but as I've never heard of anyone have their sideroblasts drop I really don't know.

I haven't got my biopsy results with me but I think my blast count was %10 at one stage and dropped to 4% (anything below 5% is good) but my sideroblasts were 78% and have never dropped below 53% (to the best of my recollection). I remember my doctor commenting that the sideroblasts weren't as important.

Sorry I'm not much help.

Regards

Chirley

[Sarah.P]

Maybe it is his blasts not sideroblasts. I've been getting all his info from him which kind of makes it a little harder because sometimes he can't really remember what the Dr. said and sometimes he just simply gets confused by what he's told. I'll call and double check with him tonight but I think he may have said blasts and I just took it as a shorter term for sideroblasts. That's a wonderful relief though!! He couldn't tell me if that was a good thing or not.

Is the anemia coming back normal for chemo?

They had it under control and now it's just as bad as it was before he started chemo.

Thank you soooo much for the response!!

[SLB]

Hi Sarah,
If it was the blasts that decreased that is great news. Basically I think less than 10% blasts is raeb 1; less than 20% blasts is raeb 2 and over 20% is classified as AML. Not sure about anemia coming back after initial response but my counts were starting to trend upwards and now are trending down but I haven't had another biopsy to see if blasts have decreased (go on 24th of Sept ) but doc has said any infections/illness may account for lower counts. Has ur dad been sick at all? Good luck. I know myself the doctors talkquite fast and it is a lot to try to process at the time. Maybe your dad could record his appointments so you can listen later?Also ask your dad to ask doc for a copy of blood /biopsy results? There are a few people on the forum that are quite knowledgeable in deciphering the results! Good luck.
Sharnie

[Birgitta-A]

Hi Sarah,
You have already got a lot of info and I will only explain a few things.

As Sharnie wrote it is very important that your father asks for copies of all test results. Otherwise you can't follow the disease and won't know the effect of treatments.

Your father has probably received Vidaza. Very good that he responded ! Only a little more than 50% of the patients will respond to Vidaza that is thought to be the best drug for MDS patients.

The drug for his low WBCs was probably Neupogen – perhaps he could continue with Neupogen for example twice a week because it is very important to prevent infections that will decrease all counts.

Treatment with Vidaza is often continued as long as the patient is responding.

Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, only supportive therapy until 2010. Then good results with Thalidomide + Prednisone.

[bebop]

since you live far away perhaps your Dad can give his Dr permission to talk to you and maybe get the nurses to fax you copies of his tests and blood work. I got copies of all of my Dad's so I could keep up with what was going on. Good luck hon.

[Sarah.P]

Thank you all so very much for posting on this!! I will talk to my dad about seeing if they can do that with his results! That would make things sooooo much easier on my part!! Hopefully the chemo will keep working for a while to come so we can make at least another trip up there. This forum has been wonderful and I'm beyond happy I found it! You all are so very nice and helpful!!

He does get copies of all his records when he goes in to see the Dr. so I'm very happy he at least remembered to do that lol. I'm not sure about the WBC shot or if it's working this time but I should find out tomorrow how his counts are this week from the blood draw. He has a draw every week on Wed. so when I call him tomorrow he should be able to tell me.

At this point knowing the results are a good sign I'm extremely relieved! Now I'm just worried he'll end up in the hospital again because of the anemia! He hasn't been sick recently but he does get a lot of nose bleeds that last a while and his ears bleed sometimes too. His last bad nose bleed was while he was at the Dr. just after they had done a blood draw and because of how long it lasted they took a second draw to check the change and he says it was significant but I can't remember the numbers he gave me. Luckily he doesn't get sick very often but unluckily when he does he usually ends up back in the hospital although that could be looked at as a good thing too because then I know for sure he's being taken care of. I'm just happy he goes to the Dr. when he knows something isn't right unlike a lot of men I know lol.

Again thank you all so much for the help!! I'm so very grateful I found this forum!!!

[bebop]

if he is getting nose and ear bleeds his platelets are probably pretty low as well. hang in there hon! it is for sure a nasty roller coaster ride.

[Birgitta-A]

Hi Sarah,
There are no approved drugs for low platelets in MDS patients. For us it is important to avoid everthing that can decrease platelets and increase bleeding. Many drugs for example pain killers can decrease platelets. http://www.pdsa.org/about-itp/warnings.html
Kind regards
Birgitta-A

[Sarah.P]

His platelets are very low again. I was hoping his counts would stay up longer then they did with the exception of his WBC which I knew would fluctuate due to the chemo. I'll pass along the info about the things that reduce platelets and have him ask his Dr if any of his meds that he's currently taking with reduce his platelets as well that way if he's taking anything that can they can find something else that won't to replace it.

[riccd2001]

Frequent nosebleeds may be a result of higher than nomal blood pressure. Have pressures been checked? Just saying it's something to watch.

[Sarah.P]

He does actually have high blood pressure and has for a very long time so that's something they've already been keeping an eye on. He also has a blood pressure machine at home and does regular checks especially when he's not feeling right. I'll tell him to check on it when he gets the nose bleeds. He's also on 5 liters of oxygen too and we know that causes nose bleeds it's the amount of time the nose bleeds are for that's worrisome.