MDS maybe turning into AML???

[layla g]

It's so hard to know what my mother has since there isn't any good doctors and all the trials and medicine are not available in Iran. I saw a hematologist in Australia and showed him by mothers bone marrow results 2 months ago and he suggested using revlimid. Since then the doctor in Iran said that her original diagnosis of MDS-5q deletion has turned into AML. He started cytarabine but without him knowing we were giving her revlimid (as he didnt accept the use of revlimid when we initially presented this option to him) Her platelets dropped to -4. The specialist in Australia suggested prednisolone for 1 week, followed by danazole. Since her condition has worsened, the doctor is telling us that she would not last for more than a couple of weeks. We felt that the cytrabine had dropped the platelet count. We stopped cytrabine and revlimid was stopped on the advice of the specialist in Australia. She has since yesterday been feeling better and has had 10 platelet units administered. Her platelet count is increasing and we do not know whether to continue administering prednisolone since the specialist in Australia suggested to take it for one week and the one week is over on Monday. We are at a point that we do not know what to do and the specialist in Australia is not prepared to suggest anything anymore. I cannot move her from Iran since she is weak so does anybody have any suggestions as to what to do?

[Birgitta-A]

Hi Layla,
You know it can be dangerous to give a potent drug like Revlimid without telling your mother's doctor in Iran. As far as I understand your mother has received both Revlimid and Cytarabine - both can decrease platelets.

Why does your mother's doctor in Iran think she has AML?

What is your mother's platelet count?

How much Prednisone is she taking?

If you take Prednisone only one week you don't have to taper the drug - that is why doctors often prescribe the drug during one week. If your mother's platelets continue to be very low you could perhaps ask her doctor in Iran if she could continue with Prednisone.
Kind regards
Birgitta-A

[layla g]

Thank you very much for your replies. It is such a hard time for us!!! you all have access to good Drs and medicine, I know now that at the end we have to have faith and trust on something be it Allah, God..... where ever we are. But let me tell you that first God, the internet and the specialist in Aust. has been our resources and not the Drs or medicine in Iran.
I do not know what the outcome is going to be?? I just pray that they all turn out good!!!!!
But any way we stopped the cytarabine , stopped revlimid. We will continue with prednisolone and danazole.

I would like to request for bone marrow biopsy to determine what she actually has. My mother says that it is very painful, is it? and is it ok to do it in her condition? The Dr's diagnoses is from blood samples only, is that sufficient???
The specialist in Australia said if prednisolone is increasing the platelets then we better continue, I do not know if it is helping. she has had 10-15 units of platelets every day. what is causing the increase??

[Birgitta-A]

Hi Layla,
As far as I understand you have to have 20% blast cells or more in the bone marrow to get the dx AML - it is not possible to tell a patient that he/she has transformed to AML without a bone marrow biopsy (BMB).

It is true that a BMB can be very painful. Some patients want to get sedated. I have very severe fibrosis and don't feel the BMBs because the doctor can't aspirate. It is the aspiration that hurts. It is OK to do a BMB in your mother's condition but if she does't accept it that should of cause be respected. I don't think the info from a BMB will change the treatment.

The problem with platelet transfusions is that the patients often get "resistent" and that is probably what has happened with your mother. There are drugs for low platelets - Promacta (Revolade in the EU) and Nplate but none of them is approved for MDS. Good that you continue with Prednisone.

Her platelets will hopefully increase when the adverse effects from Cytarabine and Revlimid are decreasing.
Kind regards
Birgitta-A

[layla g]

Hi
Why is it that they develop resistance to the platelet transfusions? is there any way to overcome this?
Have any MDS/AML patients used and had success with either Promacta or Nplate? Have their been any side effects?
thankyou
Layla

[Birgitta-A]

Hi Layla,
Some patients become immunologically refractory to platelets. There are different ways to overcome this but that is complicated as you can see in this report.
http://www.ishapd.org/1999/47.pdf

There are reports about trials with Nplate in MDS patients with good results but still no reports about Promacta. Several patients from this forum have had positive responses with Promacta or Nplate. You will find their reports if you use the search function in the meny.

Nplate can increase blast cells and both drugs can increase fibrosis but they have so positive effects that they will probably be approved for MDS sooner or later.

How is your mother's platelet count and how many platelet transfusions is she getting/day now?
Kind regards
Birgitta-A

[Sally C]

Hi Layla,
My husband is in a clinical trial for low to intermediate risk MDS at NIH in Bethesda, Md.
He had been transfusion dependent for red cells and platelets since 1/09. He started taking Promacta in March. His platelets are still low - in the 20,000 to 30,000 range but well above where he would need a transfusion. His last platelet transfusion was July 27, 2011 and that due to his needing a procedure rather than low platelets. Before that it had been 8 weeks since his last needed platelet transfusion.
You can read more about his experience with Promacta under "Clinical Trials".
If you have any questions you would like to ask me please feel free to contact me. shcalvert3@aol.com
Best wishes,
Sally

[layla g]

hello every body, i'm in iran now. It is such a hard time for us now. my mother's platelets have been 4000 -2000 -1000 for the past 5 days. She is B+, my brother is the only one with B+, so the Dr. said that we try single doner platelets. So we did and her platelets have increased to 22000 but we do not know how long they will stay at that count. We are bringing her home today and will return her to the hospital tomorrow. I read the article about promacta, i do not think we would be able to get it in here! and i'm not sure if it is suitable for her.The Dr says that her MDS has turned to AML very quickly.
Thank you all
Best regards
Layla

[Birgitta-A]

Hi Layla,
Very good that your mother's platelets increased so much when she received platelets from your brother! Normal platelets live about 10 days so hopefully she will not need platelet transfusions for several days. Then her own bone marrow perhaps will have recovered after the adverse effects of cytarabine and Revlimid.
Kind regards
Birgitta-A

[layla g]

Hi Birgitta,
We are hopeful and praying constantly, But the Dr is not. She has some fluid in her lungs aswell ,. What is Hydrea? is it like cytarabine?. I'm not sure if promacta is suitable for AML??


Thank you
Best regards
Layla

[Birgitta-A]

Hi Layla,
You know fluid in the lungs can depend on that your mother's heart isn't working so well. Does she have any drugs for her heart?

Hydrea is chemo that often is used for patients with too many WBCs, platelets or RBCs. http://www.chemocare.com/bio/hydroxyurea.asp. As you can see about 30% of the patients get low counts as adverse effects.

It is true that we don't know if Promacta is OK for AML patients because thay have not published any reports about that drug in MDS or AML patients.
Kind regards
Birgitta-A

[freedom99]

Hello Layl G;
I sent a response to your email. It's in your private message box.
My wife's high risk MDS since a year ago has transformed into AML.
It started with an increase in WBC since July this year from 7 x10^9/L to 77 today. Also a presence of blasts and aur rods in the peripheral blood. The pathologist did a blood smear and concluded AML arising in a high-grade myelodysplastic state. His reccomendations are for a BMB to confirm diagnosis, immunophenotyping by flow cytometry and cytogenics. Our Oncologist says confirmation isn't necessary since in her discussion with the pathologist there is very little doubt it's AML with the blood smear test. Aur Rods usually means AML although you can have AML without Aur Rods.
One could insist on a BMB and probably get it.
Platelets staying around 10 x10^9/L with 2 transfusions per week (refractory)
Hgb kept at 80 g/L with two transfusions per month. Doesn't seem to be changing.
Hydrea at 500mg once a day may be slowing down the WBC but it doesn't seem by a lot.
Platelets can be very low for some people like my wife and have little effect but everyone is different.
I asked our oncologist if the platelets are the final issue. She said no, it would be the ability to fight off infections because of the increasing number of dysfuncional WBC.
Hope this helps somewhat in the total picture.

[layla g]

Hello every body, I do not know what to say . My mother's lung has infected, her Platelets are down again [less than 5000], she is on antibiotics. I'm thinking of VIDAZA now. Is BMB really painfull? . I was reading King Faruq's thread, his case is similar to my mother's.
I just hope her platelets stable, so that i can take her to Aust.

Thank you

[freedom99]

Hi Layla G
Hydrea was used in our case to lower WBC. At my wife's stage it's being used to simply slow it down rather than have a major impact. As mentioned in another thread, Hydrea is not necessary the drug of choice for AML. The advantage is that it is available in oral form and can easily be obtained from drug store. Cytarabine, in doing some reading seems better for AML but is not as effective as oral form, better in subcutaneous and much better with IV. This means that usually it has to be done in a hospital or clinic setting. Revlimid definitely lowers Plateletes for a period of time, about 3 or 4 weeks and then stablilizes. To use both Revlimid and Cytabarine at the same time seems like an error. Maybe someone else can comment on this
Where is your mom's WBC levels. BMB does give some discomfort but with enough local freezing is fairly straight forward. That is if you are not sure if this is AML.
The big risk with AML is the dysfunctional WBC or lower WBC and the risk of infection.
Hydrea can also lower platelets. It seems the big issue right now is to stabilize the infection and then reassess the chemo treatment.

[Chirley]

Hi, yes BMB can be painful but it isnt unbearable. A little bit of local anesthetic at the site makes a big difference to the pain. A little bit of sedation like Midazalam is wonderful and you wake up and don't even know the BMB has been done.

Regards

[layla g]

Hi All, these are my mothers initial bone marrow biopsy results. The doctors are now beginning to say the diagnosis may have been incorrect and have not made it clear to me from the results what type of MDS my mother has/had or if the disease has definitely progressed into AML. I was just wondering if anybody may be able to shed some light on these results? or if anybodies are similar and may be able to explain as it has become clear that the doctors interpretation cannot be trusted.

Diff count: Blast=7%, Pro=5%, Myelo=8%, Meta=5%, Band=1%, Segment=34%
Lymphoid series=25%, Erythroid series=9%, Mono=4%, plasma cell=2%
erythroid maturation: megaloblastic changes seen
Myeloid maturation: dysplastic changes seen
Megakaryocytes: slightly increased in small megakaryocytes many with hypoblated nuclei at biopsy

Trephine bone biopsy: show hypercellular marrow with estimated cellularity of 80-90% and increased normal size megakaryocytes as well as slightly small megakaryocytes many with hypobated nuclei interspersed with few stromal fat cells and bone trabeculae.

Thankyou