Father has MDS RAEB 2 Please Help

[kishore_nawani]

Hello everyone. I am new to this forum My father, was diagnosed with MDS RAEB 2 in July 2009 he is 78, and is living on transfusions since then, as doctor suggested supportive care he is getting Erythropoietin injection (Weekly), antibiotics. His platelet counts and HB drops in a month & needs nearly monthly transfusions of RBC & Platelets. His latest counts show like this HB: 6.4 DLC: 9100 Polymorphs: 09% Lymphocytes: 40% Blasts 37% Myelocytes 04% promyelocytes 00 Metamyelocytes 10 Eosinophils 00% Basophils 00% Platelets: 17000. I am scared that the diesease might have progressed to leukemia, can you look at the counts and say of sure that he has leukemia or it is still MDS.
Last week he was prescribed Dacogen which is a new product & has been launched in December 2009 in India, and other drugs Vidaza and Revlimid are still to come. I don't know why Thalidomide was not prescribed, I just wanted to get some insight of the disease from people & what can be done best, any help with drugs which can prolong the disease?

Thank You.

[Birgitta-A]

Hi kishore,
Here is info about MDs from the MDS Foundation:
http://www.mds-foundation.org/pdf/handbook-english.pdf

Good that your father is getting red blood cells transfusions and EPO for his anemia. His HGB (6.4) is quite low. Do you know how his EPO level was before treatment? If his EPO was more than 500 treatment with EPO probably won't have any effect. He could perhaps get more frequent red blood cells transfusions?

The most important white blood cells are the neutrophils. Do you know his neutrophil count? The neutrophils are about 50% of the white blood cells so if you know the white blood cell count you can figure out the neutrophil count. If it is low (less than 1.5) your father perhaps needs drugs that stimulate the white blood cells like Neupogen.

When his platelets are so low (17 000) it is important that he avoids everything that can decrease platelets - many drugs - for example pain killers - decrease the platelets.

As you can see in the MDS Foundation info we have leukemia if our blast cells are more than 20% in the bone marrow.

Hope Dacogen will give good results?
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal and Exjade for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[kishore_nawani]

Thanks Birgitta

I think Polymorphs are neutrophils if i am not wrong, anyway looks like his neutrophils are low 09% of 9100 which is 0.82 so I asked doctor for Neupogen & he has started biweekly. He will be starting Dacogen 20 mg/m2 for 5 days starting Next week, my worry is he is getting 2 Neupogens for WBC one EPO for his anemia every week now Dacogen with Neupogen & EPO will that be a problem any thoughts?

[Birgitta-A]

Hi kishore,
You know EPO and Neupogen work well together - sometimes patients who havn't had any response when they are treated with EPO alone have a good response when treated with the two drugs .

Many patients who start with Dacogen get lower counts before they respond and they are often treated with EPO and Neupogen.

Now you will have to look out for bleedings due to low platelets. There are drugs coming for low platelets and one member of Marrowforums is getting that kind of drug - Promacta - but I don't know if it is approved in India. In the US it is only approved for a bleeding disease (ITP) but I hope to be able to get it "off label" in Sweden if my platelets (last count 32) get lower.
Kind regards
Birgitta-A

[kishore_nawani]

My Father went for the 1st cycle of Dacogen (5 days 20mg/m2) from 2nd to 6th Feb 2010. I had his counts checked this week Hb : 7.3 Platelets : 16000 and WBC : 1.6 (neutrophils 12%), and says No immature cells seen. This is his 4th week of Dacogen, problem is he is feeling congession in chest, cough and dosen't eats much, says he feels like vomiting, sleeps more almost all day.He is scheduled for 2nd Dacogen cycle from 2nd March. I don't know what to do as his WBC is quite low (Will that be a problem?). He is having Neupogen twice a week. Has anyone experenced such problems with Dacogen?

I had his Ferritin test done it is 1880 ng/mL should be 22.00 to 322.00

Thanks

[Birgitta-A]

Hi kishore,
You know the first cycles with Dacogen or Vidaza often decreases the counts before the patient responds. Hb 73 is OK. Platelets 16000 are OK if your father isn't bleeding from gums, nose or anywhere else. His WBCs are low and the neutrophils very low at 0.2 (12% of 1.6). When my neutrophils were that low I got Neupogen every day.

Good with no immature cells !

The ferritin level is a little high (should not exeed 1000 in MDS patients) but it takes years to develope symptoms of iron overload from liver and heart so you don't have to worry about the ferritin value.

Nutrition is very important when we are very ill - did your father get drugs to prevent nausea when he received Dacogen? Ask your father if there is something he thinks he could eat. There are many types of special nutritional drinks for patients receiving chemo and the hospitals often can offer them to the patients.
Kind regards
Birgitta-A

[kishore_nawani]

1. Does allogeneic transplant has age restrictions as my father is 78 can he be a candidate for allogeneic transplant?
2. If yes, he does't has any Brothers or sisters for a match, are there organizations if someone has a list like Anthony Nolan Bone Marrow Trust, who can find a match for him?
3. Is decitabine being used for allogeneic transplant?

[Birgitta-A]

Hi Kishore,
As far as I have understood age is the most important variable when they look at results of stem cell transplantation. Look at page 37 in this guidebook about MDS: http://www.aamds.org/aplastic/files/dms/MDSGuide.pdf

I have read results from trials where older patients have has a SCT but I don't think any patients have been 78 yo.

Before SCT they try all kinds of drugs - most of them much stronger and more toxic than decitabine.
Kind regards
Birgitta-A

[squirrellypoo]

I just wanted to add in about the low neutrophils - before I went in for my transplant mine were 0.2 but I never had any GCSF injections for it, because my levels had dropped very steadily over the course of months to that level. The doctors said if it was a sharp decline, they'd have wanted to bump them up, but apparently a slow decline is better left alone in some circumstances.

[Birgitta-A]

Hi kishore,
In the latest Blood journal they report about quality of life after hematopoietic cell transplantation. When you look at the characteristics of the patients you can see that there are patients that are 78 yo. The study is from City of Hope National Medical Center, Duarte, CA.
http://bloodjournal.hematologylibrar...ct/115/12/2508
Kind regards
Birgitta-A

[JyotikaK]

Hi Kishore,

What were the results of Dacogen?

My Father was diagnosed with MDS (RAEB I) in July 2009 and has been on supportive care since, but now the transfusion requirement is increasing. The Doctors are suspecting that his disease might have progressed. He is also being suggested Dacogen.

Which Doctor in India are you consulting?

Thank you for your response in advance.

Jyotika
_____________

Father has MDS, on supportive care
HB: 9, TLC: 2.5, Platelets 18000