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MDS Myelodysplastic syndromes

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  #51  
Old Wed Oct 10, 2012, 07:29 AM
teo teo is offline
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Hi Birgitta-A,

Thanx for the MDS criteria info. It will helps me to ask the doctor if i have doubt on the BMB + cytogenetic report.

Actually i hope the 3rd BMB will give us decisive results whether my mom has MDS or actually AA.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #52  
Old Thu Oct 11, 2012, 11:24 AM
teo teo is offline
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RBC for 1 unit of blood contribute how many HB level

Hi all,

Just wondering anyone knows 1 unit of RBC transfusion contribute to how many HB level ? According to my mom hematologist, around 2 for each unit of RBC blood transfused. I dont know how true is his comment.

Example : If your HB is 5 before BT, and if 2 packs of blood are transfused, then your HB should be around 9.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #53  
Old Thu Oct 11, 2012, 01:12 PM
Birgitta-A Birgitta-A is offline
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HB

Hi Teo,
One unit of Packed Red Blood Cells will increase HB about 1.0 g/dl:
http://books.google.se/books?id=HXsl...globin&f=false

As far as I understand your mother is small and thin - perhaps her HB will increase more.
Kind regards
Birgitta-A
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  #54  
Old Thu Oct 11, 2012, 06:33 PM
Chirley Chirley is offline
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I'm kind of medium height and a bit fat and my Hb would increase between 6 to 10 so from 80 to 86 or 90, if I was given Lasix the Hb would be higher because of the heamoconcentration factor.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #55  
Old Thu Oct 11, 2012, 08:19 PM
riccd2001 riccd2001 is offline
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Depending on volume and freshness...

Over a four year tx treatment totalling about 200 bags of PRBCs (depending on volume and freshness of the donation), I recieve a boost of from 7 to 10 g/L per bag.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #56  
Old Thu Oct 11, 2012, 10:03 PM
teo teo is offline
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HB increase for 1 unit of blood

Thanx all for the good indicative figures about the HB contribution/unit of blood. Appreciate that.

Hi Birgitta-A, yeah she is small and thin ). We asked her to put on more weight maybe 2-3kg is good for her. She doesnt eat much, maybe she doesnt feel like eating. Ask my mom why, she always say everything is fine.

Another thing is she is always pessimistic about her health conditions, asking why she has to go for BT every month and why she has to take all these medications (Hypertension n High cholesterol) and etc.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015

Last edited by teo : Wed Oct 31, 2012 at 10:41 PM.
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  #57  
Old Fri Oct 12, 2012, 08:23 AM
Birgitta-A Birgitta-A is offline
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Weight

Hi Teo,
Hopefully your mother is eating well as most people in Asia - chicken, fisk, fruits and vegatables. Tell her that the best way for her to fight her disease is to eat well and take as much exercise as possible.

I suppose that her family already is having their meals with her and walk with her because she has probably not understood that she has a very serious disease. The depression can depend on fatigue that is common in MDS patients.
Kind regards
Birgitta-A
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  #58  
Old Fri Oct 12, 2012, 10:00 AM
teo teo is offline
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Hi Birgitta-A,

We have been talking and telling her many many times that if she wants to get healthier, she has to eat well but she never listen. She does not like to drink water as well which is not good for her body. My mom is very stubborn, cant really changed her mind now.

We dont want to tell her about MDS as this will make her think even more.

Actually she has a morning walk almost everyday. Sometimes she has evening walk with the granddaughter. So far so good )

Have a nice and wonderful weekend to all.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015

Last edited by teo : Sat Oct 13, 2012 at 12:55 AM.
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  #59  
Old Sat Oct 13, 2012, 04:45 AM
teo teo is offline
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MDS centers of excellence

Hi Birgitta-A,
FYI, about Dr Lim from "MDS centers of excellence" in Singapore, unfortunately he left SGH. The guest relations helped me to find another doctor, Dr Aloysius Ho which interested in MDS .

http://www.mds-foundation.org/mds-ce...of-excellence/

Actually i checked all the hematologist profile in SGH, i only found Dr Aloysius Ho profile with interest in MDS.

I consulted a professor in one of the Malaysia University that did some research on MDS back to year 2006. According to her, there is no MDS expert in Malaysia but most of the hematologist are well versed with the disease. To be honest, so far i have not met one yet.

I am not sure whether there is MDS expert in Singapore or not. Seems to me it is very slim chances that i could find one. Anyway i will try the hematologist with MDS clinical focus in Malaysia first, if he still cant help us to conclude whether my mom has MDS or not, then i have to go to Singapore SGH to find out.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015

Last edited by teo : Wed Oct 31, 2012 at 10:43 PM.
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  #60  
Old Sat Oct 13, 2012, 03:14 PM
Birgitta-A Birgitta-A is offline
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Dr Ay Ho

Hi Teo,
When I looked at PubMed for Dr Ay Ho I found 20 abstracts from articles where he has been one of the authors. He seems to be one of the best MDS specialists in the world but much of his research is focused on SCT.

Here is a report from 2003 when he was giving a lecture at ASH (the big American conference) together with three very wellknown MDS specialists.
http://www.ncbi.nlm.nih.gov/pubmed/14633782

If you can't find a MDS specialist in Malaysia you could contact him.
Kind regards
Birgitta-A
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  #61  
Old Sat Oct 13, 2012, 10:50 PM
teo teo is offline
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Dr Ay Ho

Hi Birgitta-A,
I sent all my mom latest reports to him as requested, when i asked him, (actually not him, Guest Relations executive) can he concludes from the BMB test report that my mom is 100% MDS or not, the reply is the same for all the doctors so far, the doctor prefers to physically assess your mother in his clinic first . We are planning to see him if the hematologist (from 3rd specialist hospital) in Malaysia still not helping.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #62  
Old Mon Oct 15, 2012, 10:57 PM
teo teo is offline
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Follow up for my mom has been postpone to 24th Oct

Hi all,

Just to update all that my mom next visit will be postpone till the week after as the doctor is taking holiday this week.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #63  
Old Tue Oct 16, 2012, 10:01 PM
teo teo is offline
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Milk and tea can decrease the iron absorption

Hi All,

I need some advice about the above mentioned, i read it some where that it helps to reduce the iron absorption in the body. I dont know whether this help to decrease the iron overload in the body or not. Any comments are utmost welcome and appreciated. Thanx.

"The consumption of large quantities of tea, which contains tannates, can decrease iron absorption."
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #64  
Old Wed Oct 17, 2012, 12:54 AM
teo teo is offline
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Would BT caused much load to the heart ?

Hi All,

I spoke to my sister this morning as my mom needs the BT today, according to the "general doctor" in the goverment hospital, too much BT (2 packs actually) might caused load to the heart, just wondering is this true especially when we told the doctor that my mom has high iron overload now. Need an advice urgently. Thanx in advance.

My mom HB is at 7 now before the BT. They are giving my mom only 1 BT today.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #65  
Old Wed Oct 17, 2012, 02:14 AM
Chirley Chirley is offline
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Hi Teo, that is a question best answered by a doctor. Some people who are younger with good healthy hearts can tolerate larger amounts of blood than an older person or someone with reduced heart or kidney function. Your Mum is quite small so that has to be considered as well.

Sometimes a diuretic injection or tablet is administered to stop the fluid load from affecting heart and lung function.

Good luck.

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #66  
Old Wed Oct 17, 2012, 03:40 AM
teo teo is offline
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Hi Chirley,

Thanx for sharing the info. Actually the doctor did not check anything on the heart or kidney. He was giving us this statement just because we told him that my mom was diagnosed with Iron overload due to frequent BT.

That's make me doubt what the doctor says, as my mom always get 2 BT every month. Will consult with the hematologist next week about this question.

About the diuretic injection or tablet, is it normally needed for the frequent BT patient ? or this treatment is only needed with someone with weak heart and kidney ? Is it possible to find out from the blood test whether a patient with weak heart or kidney ? Thanx in advance for the help.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #67  
Old Wed Oct 17, 2012, 04:28 AM
Chirley Chirley is offline
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The doctor must have been more worried about the level of iron in the heart rather than the load on the heart from the fluid in the blood transfusion.

I don't know enough to comment on iron overload in the heart.

I have ferritin overload in the liver and my liver enzymes are raised. Liver biopsy showed increased iron and ferritin which has caused hepatitis.

As far as I'm aware this hasn't caused me to feel sick. I think it's my treatment causing me to feel ill.

Regards

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #68  
Old Wed Oct 17, 2012, 04:52 AM
teo teo is offline
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Hi Chirley, thanx for the prompt reply and sharing your personal experience on high ferritin and iron overload. Appreciate that.

Hope you had recovered from hepatitis.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #69  
Old Wed Oct 17, 2012, 07:54 AM
Birgitta-A Birgitta-A is offline
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BT

Hi Teo,
First I will try to answer your question about iron overload. It is true that many kinds of food can increase or decrease iron absorption. I knew fron dx that I should get iron overload since I was transfusion dependent. I stopped eating red meat and Vitamin C. I drank tea and milk. http://www.irondisorders.org/diet/

The amount of iron we can avoid is very small compared with what we get when we are transfusion dependent. Then som patients like me and perhaps your mother have hemolysis (the red blood cells burst too early).

If your mother has tolerated 2 units of blood her heart seems to manage that. Of cause it is better if she only needs 1 unit. I have never received diuretics but my heart and kidneys are OK.

You can control the kidney function with the creatinine test. This is a very common test and they have probably already controlled that. Ask for the result and for the reference value of that lab (written near the test result)

The heart should be controlled at every visit to a doctor, who should listen to the heart. There is no blood tests for that but many other examinations like ECG.
Kind regards
Birgitta-A
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  #70  
Old Wed Oct 17, 2012, 10:14 PM
teo teo is offline
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Hi Birgitta-A,

Thanx for the tips about avoiding to absorb more iron to the body and how to get a simple kidney and heart tests . Appreciate that

About the BT on 2 packs/month for my mom, it will increase the HB to around 11 or 12 plus from 7 as we observed so far. With this HB levels, at least my mom does not feel weak for a month. By reducing the BT to only 1 pack, that might last for 2 weeks, just guessing at the moment. For sure we prefer my mom to have less BT as possible.

Yesterday my sister told me that she heard from a cancer patient telling her "wheatgrass" might be able to help to boost up my mom immune system. As i am currently in Japan, ask the local, there were 2 types of "wheatgrass" available in japan. One with very high Iron + many other vitamins (oomugivskale) and the other one with very low iron + many other vitamins (kale). For my mom, i plan to get her the "kale" as she has high iron overload.

Just wondering anybody try "wheatgrass" before ? If you did, much appreciated if you can share your experience with me. Thanx in advance.

http://www.aojirurealreview.com/hika...ugivskale.html ---> composition tables comparison for the 2 "wheatgrass" that are available in Japan.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #71  
Old Fri Oct 19, 2012, 08:11 AM
Birgitta-A Birgitta-A is offline
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Wheatgrass

Hi Rob,
as far as I understand several members of this forum has tried wheatgrass as an iron chelating drug. http://meeting.ascopubs.org/cgi/cont...ct/27/15S/7012

As you can see they used fresh juice in the study. I have not read anything about that drug boosting the immune system.
Kind regards
Birgitta-A
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  #72  
Old Fri Oct 19, 2012, 10:51 AM
teo teo is offline
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Hi Birgitta-A,

That's a very good information about wheatgrass, might be able to reduce the iron overload problem and also possibly extend the need for BT.

I guess the cancer patient that spoke to my sister maybe felt a lot better/more strength after consume wheatgrass, then she presumed that it helps her to boost up her immune system. As she was from a small town, all these info are pass on from "mouth to mouth".

Have a nice and pleasant weekend to everyone.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #73  
Old Tue Oct 23, 2012, 08:39 AM
teo teo is offline
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3rd BMB

Hi all,

Just wondering what is the best way of going through the BMB ?

1) anaesthetic ---> unconscious during the BMB
2) Conscious when the BMB was done ---> Sedative on the part where the doctor inserts the needle.

According to my mom past experience, one done in goverment hospital, (anaesthetic) painful when she woke up. The other one is done with the specialist hospital, no pain at all but with sedative. Any input is very much appreciated. Thanx
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #74  
Old Tue Oct 23, 2012, 11:40 AM
Neil Cuadra Neil Cuadra is offline
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Teo,

There are a number of forum threads discussing the bone marrow biopsy procedure. Among them are the recent Bone Marrow Biopsy Fear thread and the Bone Marrow Biopsy & Aspiration and BMB and sedation .... threads from earlier this year.
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  #75  
Old Tue Oct 23, 2012, 10:14 PM
teo teo is offline
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Many thanx for the threads Neil Cuadra. Appreciate that.

Actually i went through some of the threads before but still i would like to know more as every individual have different thoughts on this test .

As my mom next BMB will be done in the goverment hospital (different doctor, might be better or worst). So i am a bit worry she might have the same bad feeling again as the 1st one.

As the painful feeling is depends on individuals, I will leave the decision to my mom.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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