Confused with Bone marrow report

[Marlene]

Jus a comment regarding the B12. It would be good to know what her levels were before they started the shots. B12 supplementation can falsely elevate the serum levels.

B12 is a very safe supplement to take and oral B12 can be just as effective as the injection. It's a good idea to take B12 even if the test show low-normal levels since B12 serum testing is not a definitive indicator of B12 status. A recent study showed that patients with low-normal levels were actually deficient in B12 and supplementation reversed their condition. They were pretty aggressive in restoring their B12.

[teo]

Hi Marlene, thanx for the info.

About B12 injection, this was done early of 2012 and it has stopped now. According to my sister, the B12 injection was given around one week one shots for almost 12 weeks continuously.

Now my mom go to goverment hospital just for blood transfusion and CBC check and some vitamins (Vitamin C, B complex and Folic acid), nothing else.

[Birgitta-A]

Hi Teo,
I have never read anything about age and treatment with Vidaza or Dacogen and I have read a lot about these drugs.

You know I received 142 units of blood between 2006 and 2010 when I at last accepted treatment with Thalidomide + Prednisone (I am very afraid of adverse effects of drugs). Other members have received much more blood during much longer time.

Then your mother perhaps will respond to EPO-drugs together with Neupogen or similar drugs.

I am sure that your mothers bone marrow cells do divide - the problem is that she has hypocellular (few cells) marrow (like I have). In our cases it is difficult to find mitosis.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks for sharing your personal experiences with me. Appreciate that.

Just curious why you are not continuing with the blood transfusion anymore when your counts are slowly decreasing but instead going for treatment on Thalidomide + Prednisone ? Please ignore this question if i have cross your line.

Actually from the forum, i noticed that some of the patients have the Vidaza and/or dacogen and they are older than my mom. I guess the doctor was considering other factors as well like costs (very expensive according to the doctor), side effects and etc.

[Birgitta-A]

Hi Teo,
You know I have no other diseases than MDS and actually feel fine. I manage well with a HGB of 8.0 and don't need transfusions now when my HGB is about 11.0 due to Thalidomide + Prednisone.

When I started to take Thalidomide 2010 I received 2 units of blood every week. I have irregular antibodies and that means that it takes hours to find blood for me - I leave blood for a test the day before transfusions. Then I received Desferal from a small home-pump in my port-a-cath (directly into i vein) during 4 days. The pump has to be taken away. This meant that I had to visit the daycare ward 3 times a week.

Then my ferritin level was rising rapidly (max 5600) and my dysfunctional platelets were 22 (risk for brain bleeding).

These problems made me accept Thalidomide + Prednisone. Now I visit the hospital 3 times a month instead of 3 times a week - blood work twice and flushing of the port once a month.

I have a very low dose of Thalidomide - 4 caps á 50mg when the usual dose is 50mg/day and no adverse effects.

Only about 30% of MDS patients respond to Thalidomide and the median response time is about 9 months so I have responded very well.

If your mother's doctor thinks Vidaza and Dacogen are too expensive or have severe adverse effects and not should be given to your mother he ought to say that.
Kind regards
Birgitta-A
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks again for sharing all the medications used and the explanation. Congrats to you that u are BT independent now.

Actually my mom was on hypertension and cholesterol medication, she has been taking these medication for more than 10-15 years i guess. The dosage is not high. Just half a tablet each.

Actually my mom is doing fine as well even with HB on 7, she just complains about the shushing sound on the brain and heartbeat is pumping faster. So now when she hears shushing sound on the brain, she knows she needs blood transfusion soon.

Is it a norm for BT patients to have irregular antibodies after few years ?

Actually for my mom, she has to go for blood test one day before and the BT is done 1 or 2 days later. For this case, is it because she has irregular antibodies ? Actually i asked my mom hematology doctor whether she needs a test for antibodies or not, the answer is NO.

According to my sister, the doctor was saying the costs for the full treatments (either Vidaza or Dacogen) is around US50K and there were severe adverse effect and my mom might not response to the drugs. So the doctor was recommending NOT to go for Vidaza or dacogen treatment. The doctor advices my sister that if we can provide my mom with good quality of life rather than quantity of life but in pain. He thinks my mom with be more happier. Actually my sister kind of accept the idea after talking to her friends and she tried to convince me. Anyway we will leave this option till the last minutes.

What i know so far from the internet is vidaza or dacogen is only recommended when the patient has high risk MDS. I dont know why suddenly the doctor mentioned about this option when he told my sister that my mom has RA MDS which consider low risk MDS. Maybe we asked too many questions about what other treatment options for MDS. Just my guess.

[Birgitta-A]

Hi Teo,
Your mother ought to control if she still needs medication for hypertension and high cholesterol - perhaps she doesn't have these symtoms now.

There are patients - like me - who have antibodies at dx. Mine probably developed after pregnancies. As far as I understand it is common that patients show antibodies after txs. Every time we receive blood they test our blood and if we have antibodies they control which antibodies we have so they can find blood that is OK.

I don't know why your mother can't receive blood a few hours after the blood test. If your sister is following her to the lab your sister could ask the nurses this question.

It is true that Vidaza/Dacogen are expensive and many patients have adverse effects. A little more than 50% of patients with high-risk MDS respond. The results for low-risk patients are very different in different studies. At least 2 studies show that low-risk patients who need at least 4 units of blood during 8 weeks show lower respond rates.

The big problem is that we still don't know for sure if your mother has MDS. If she har RA the most common treatment is EPO-drug combined with Neupogen or a similar drug if her serum-EPO initially was less than 500. You should concentrate on (1) getting info about her dx. If it really is RA you have to (2) get info about serum-EPO initially.

Good that your mother is doing fine!
Kind regards
Birgitta-A

[teo]

Hi Brigitta-A,

Yeah i agreed that we need to concentrate on her further diagnosis now as we still not sure whether she is really MDS or not. So far, the hematologist says she is MDS RA after the 2nd bone marrow report and cytogenetic tests done on early 2012 but again as we discuss here in the forum, seems like there were no conclusive answer yet for the test done so far. I will discuss with my sister about going for all the tests that the doctor never did plus the BMB again this coming few weeks as my sister is busy with kid exams at the moment. She will only free 2 weeks from now.

To answer your queries and giving you some info of my mom history medical records.

We dont have "so good" goverment hospital in my city. They have no facility to check antibodies and etc i guess as they will ask my mom to come for CBC checked a day before and go home as they need to wait for the blood from another city. That's what they told my sister.

We asked the hematologist and he confirmed that my mom has RA but he never gave us any option like you mentioned. EPO + neupogen or similar drugs. The EPO, VIDAZA or Dacogen are proposed when we asked again and again about my mom MDS status and options available. Actually he just propose to use EPO ONLY.

The hematologist never informed my sister that my mom needs an iron overload test after 10 - 20 units of BT, he only told us when we asked, some more he says sarcastic words like if you dont trust me, you can ask another doctor somewhere for advice. Basically he wants us to keep our mouth shut, he knows what is best for his patient. That's quite common in Malaysia private or goverment hospital. Actually my sister and i are a bit worried now that we might piss him off. According to my sister, she can tell the doctor is a bit piss off as he always says he needs strength to answer my sister questions.

We are consulting an oncologist now in another private hospital, basically he agreed with what the hematologist did for my mom.

I remembered my mom has fingers and toes bone deformities on the joint, she has this at least for more than 25 years ago but this few years, it gets bad but she never complains about it. She still do what she used to do, walking to my sister house sometimes and walking around the garden near our house everyday early in the morning, after lunch and dinner. Is it possible that she has thalassemia ?

She has a bone spur on the spine and did the operation maybe 2 or 3 years ago. Before the surgery, the doctor noticed that she has a bit low on the blood cell counts, the doctor prescribe my mom with medication to increase the cell counts after the surgery. We did not followed up her condition after that. I was thinking to go back to the doctor again to find out more. What kind of medicine he prescribe to my mom. If it was different from what she has now, maybe we should try it again to see whether it boost up the cell counts or not.

[teo]

Hi all,

I attached the latest CBC and some of the extra tests report here. To me it seems like my mom has Hemolytic anemia if i compared the results with the iron related diagram.jpg found on the web. I know it is not so accurate as my mom has iron overload problem now. If anyone knows anything about my mom latest test results, much appreciated if you share some insight on the result. Thanx.

Extra info, my mom HB was 6 during the checked in the goverment hospital on 19/9/2012 and she has 2 packs of BT. After 14 days (3/10/2012), she has the CBC checked again in private hospital and the HB was at 9.4 which looks pretty good. As we heard from the hematologist before, normally one pack of blood will provide around 2 to the HB level, meaning to say the HB doesnt drop so much this time. Hopefully the HB will stayed above 8.5 after 2 weeks from now. My mom started taking sunchlorella (http://www.sunchlorella.com/) for around 2 months now. It seems the supplement helps as the HB did not drop so much compared to before. Anyway we will monitor for longer time.

About sunchlorella (supplement), we told hametologist about this and he says it is fine to take as it is a supplement. Since my mom has high iron overload problem now, we ask the reseller to check with the manufacturer in Japan, according to the fact sheet given, on the sunchlorella tablet, it has 5mg/15 tablets/day which i guess is very high, my mom has stopped taking the tablet . The liquid form is without iron so my mom will continue consuming.

One question, for the 5mg iron /day, is it consider very high or still within the acceptable levels ?

[Birgitta-A]

Hi Teo,
Then I understand why your mother have to wait for her blood. Still it could be interesting to know if she has irregular antibodies. When I received txs I always got a corticosteriod injection that hopefully should prevent the antibodies to cause hemolysis (the red blood cells burst too early).

As soon as your mother has had a third BMB that should tell us if she has MDS she could start EPO treatment. More patients respond if they get the combination with white blood cell growth factors. http://www.apocpcontrol.org/paper_fi...m%20Newman.pdf
If her doctor doesn't agree to that treatment EPO drugs alone are better than no treatment.

I am afraid that I don't know anything about Thalassemia - it is very uncommon in Sweden.

You can of cause ask the name of the drug your mother got 2 or 3 years ago but probably it was some kind of iron drug. As you are aware of that would not be the best drug for her today when we know that she has iron overload.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanx for the suggestion. I will ask my sister to inform the doctor in the goverment hospital to check the antibodies just in case.

About blood type matching
Human blood is typed by certain markers (called antigens) on the surface of red blood cells camera. If you get a blood transfusion, the transfused blood must match your type; that is, it must have the same antigens as your red blood cells. If you get a transfusion of blood with antigens different from yours (incompatible blood), your immune system camera destroys the transfused blood cells. This is called a transfusion reaction and can cause serious illness or even death. This is why matching blood type is so important.

[teo]

Hi All,

One quick question, if a patient has iron overload, would the test result on liver, kidney, heart etc showing normal range or ? Thanx.

[Birgitta-A]

Hi Teo,
The first organ that will show iron overload is the liver. The tests called ASAT and ALAT in Europe can increase. I have always had normal liver tests though my ferritin once was as high as 5600 but that was a very short peiod.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A, that means there is no point of doing the normal blood test which consists of kidney, liver, heart and etc to find out. I was thinking maybe these tests can give us some hints whether the kidney, liver, heart were affected or not

I am asking because my mom has her yearly blood test recently before going for ferritin test which showed the liver, kidney, heart and etc are in normal ref range but the ferritin level was 4877 as mentioned before.

Thanx for the info.

[teo]

Hi all, i found a website, simple and easy to understand about MDS, there were consists of what test are used to diagnosis MDS and pretty details explanation about the treatments available and etc. Hope it helps.

http://www.mds-foundation.org/patient-handbooks/

Please read both the handbooks on the web.

[teo]

Hi Hopeful,

I spoke to my sister again and it was confirmed that YES, only 25mg/day for 3 months then increase to 50mg/day for another 3 months.

About your statement on the therapeutic dosage for cyclosporine is 5mg per kg of her body weight per day. So, someone weighing 50 kg (for example) would take 50*5 or 250 mg of cyclosporine per day. This dosage is typically divided between morning and evening to maintain a more stable level in the blood.

Just wondering is this a international standard dosage for MDS ?

cheers
teo

[teo]

Hi Brigitta-A,

My sister spoke to the oncologist in another private hospital for advice, according to him, there is no need to check the EPO level before the EPO injection, this is exactly what the hematologist mentioned before. Both of them saying that EPO would not help in my mom case. Basically they dont even want to try.

I think they maybe make the below assumption as my mom is frequent BT patient at the moment but i think still worth trying even she is frequent BT patient as long as the EPO level is below 500.

The treatment is most likely to benefit patients whose natural (blood serum) EPO level is below 500 International Units per liter and who do not need frequent transfusions.

Another not so good news is i think they were not many hematologist in private hospital. So far i only found 2 hematologist in private hospital. One of them is the one that treat my mom now.

Actually we plan to change the doctor, hematologist to oncologist that we seek for 2nd advice but he told my sister that he feels not so good as he has to send the BMB analysis to the hematologist that treated my mom. They know each other actually.

I really dont know how to proceed now as if i tell the hematologist to try something, i can be sure that he would not be happy at all or he might says something like he would not take responsibility if something happened if we insisted to try new options like EPO with white blood cell, higher dosage of cyclosporine as mentioned by hopeful and other treatments that might deem will help my mom to be transfusion-independent.

Need your advice on this, if the hematologist really say something like above, should i insisted to do it anyway ? Appreciate your comments on this. Thanx.

[Hopeful]

Originally Posted by teo

Hi Hopeful,

I spoke to my sister again and it was confirmed that YES, only 25mg/day for 3 months then increase to 50mg/day for another 3 months.

About your statement on the therapeutic dosage for cyclosporine is 5mg per kg of her body weight per day. So, someone weighing 50 kg (for example) would take 50*5 or 250 mg of cyclosporine per day. This dosage is typically divided between morning and evening to maintain a more stable level.

Just wondering is this a international standard dosage for MDS ?

cheers
teo

Unfortunately, as you are discovering, there is no "standard" dosage of cyclosporine for these diseases. 5 mg/kg/day is an accepted regimen based on a number of clinical trials and published papers. Someone weighing 50kg, for example, would take 125 mg in the AM and 125 mg in the PM. Some doctors will take trough measurements to ensure a target cyclosporine level in the blood while others will just look at the trough to ensure that the concentration doesn't exceed a toxic level in the blood.

You may want to see if your mom's doctor is willing to consult with an expert in AA/MDS in the States or elsewhere. You will have to approach this very diplomatically, explaining that although you highly respect his expertise, you fear that your mom may have a very rare disease and would like him to consult with someone who has seen more cases of this before. I have found that the experts in these diseases are very willing to share their knowledge.

[Birgitta-A]

Hi Teo,
You know I really don't like to discuss treatment in a patients when we don't have a BMB that tells us that the patient has MDS.

If your mother has RA and we don't know her Serum-EPO initially she could be treated with EPO + G-CSF like Neulasta (like Neupogen but longacting).

23% of patients who need 2 units of blood or more/month and have Serum-EPO less than 500 will respond when they get an EPO-drug alone. Seven % of the patients who need 2 units of blood/month and have a Serum-EPO ≥500 will respond. More patients respond when they get growths factors for both red (EPO drug) and white blood cells (Neulasta). Why not try that treatment?

It must be difficult to force the doctor to try a treatment - I understand it is different in Malaysia compared to USA or Sweden. Can't you ask him what he thinks will happen to your mother if she gets this treatment that is common in RA patients.
Kind regards
Birgitta-A

[Birgitta-A]

Hi again Teo,
You know if you look at "MDS centers of excellence" you will find Singapore General Hospital, Singapore, Lay-Cheng Lim, MD
http://www.mds-foundation.org/mds-ce...of-excellence/

Is it not possible for you to try to get a second opinion in this clinic?
Kind regards
Birgitta-A

[MDSPerth]

Teo,
My partner Paul was diagnosed with MDS in July 2012 and so far his only treatment has been the growth hormones EPO and G-CSF. When diagnosed, he was low in all three - ie red, white and platelets. The injections have been really successful in raising his neutrophil counts from very low (.35) to into the normal range (increased to 4.35 - they then reduced dosage and now fluctuate around 2.70) and his haemoglobin has increased from 94 to 105. Even his platelets have shown an increase from 24 to 40 and this is unexplainable.

In Pauls case, he is not producing sufficient cells, but most of what he is producing are reasonably healthy (ie minor dysplastic features) and he has low blast cells. In this instance hypometholathing drugs like vidaza are not suitable because they would kill off the healthy cells that he is producing.

Because MDS is so variable, perhaps your mothers story could be something along these lines and this could be why they are not recommending some of the options that are available. It took a lot for us to start to understand why some people seemed to have access to what seemed like the latest treatment for MDS and Paul was not getting the same benefit.

Until the cytogenetic test results were returned, the original BMB results favoured AA, however when the cytogentic tests returned chromosome abnormalities which are consistent with MDS.

MDS seems to be such an insidious and variable disease that even the 'experts in the field' are constantly learning and trialing new methods of treatment.

Hang on in there Teo.

[teo]

Hi Hopeful & Brigitta-A,

I found another hematologist in another private hospital (3rd specialist hospital) that has clinical focus on MDS. I hope he is the right person for 3rd advice. My sister is arranging to meet the doctor soon.

When i found the info above, only then i understand what is the differences between hematologist with not MDS clinical focus and hematologist with MDS clinical focus. As you all mentioned, we need to consult the MDS experts.

About both of your suggestions & advices, i will definitely ask my sister to consult the doctor again.

Hi Brigitta-A,

Actually my mom has two BMB, as the first one was with the goverment hospital, i dont know why they dont allow us to even photocopy the test report, the 2nd one is from the specialist hospital which saying my mom was diagnosed with MDS and when my sister asked which type of MDS, the doctor says RA.

I know we need the 3rd or maybe 4th one to find out whether my mom really has MDS or not as so far, all the tests done by the specialist is not really convincing after discussed in the forum.

I will send MD Lay-cheng Lim in singapore a mail first, let see what he thinks about my mom case.

I truly appreciate all your good informative info and advices. I will update you all with my mom latest results maybe few more weeks from now. Thanks to all the people that helping me to get through all/most of my difficult time with knowing about MDS. Thanks again folks.

[teo]

Hi all,

Just wondering anyone have the below test result when going for cytogenetic test ? As you can see from my mom cytogenetic report below, there is no mitosis and only very few cells are found. Is there any other ways to test the Chromosomes abnormality besides the cytogenetic test.

Another question is without the cytogenetic report, how the hematologist be sure that the patient has MDS or not and in which type ?

Cytogenetic report
Clinical Diagnosis : Myelodysplastic Syndrome
Comment : Very few cells and No Mitosis were obtained from this specimen

[teo]

Hi Sandi,

Thanx for the moral support. Glad to hear that Paul's is responding well with the medication. Congrats.

Just wondering did Paul went for BT when he has low counts on all three - ie red, white and platelets. Just curious.

[Birgitta-A]

Hi Teo,
At page 35 in this article you will find the WHO criteria for MDS
http://www.hematologics.com/pdf/ref36.pdf

As you can see it is very important to exclude all other hematopoietic or non-hematopoietic disorders as primary reason for cytopenia/dysplasia.

If your mother is sedated when they perform the BMB they will hopefully get an aspirate and a biopsy that contains good material and make it possible to get a diagnosis.

I don't know if there are other ways to diagnose chromosome aberrations than cytogenetic testing.
Kind regards
Birgitta-A