Frequency of platelet transfusion

[Neel]

Hi,

What should be the cretieria for platelet transfusion ? Different doctors have different opinion. Some advise transfusion at 20000 or even at 30000 counts. (though knowing the counts itself is a big headache as different labs shows different readings for the same sample).

Neel

[Birgitta-A]

Hi Neel,
The criteria for platelet transfusions are not fixed. Many patients with MDS (like me) have dysfunctional platelets and need platelet transfusions if the platelets are lower than 30 000. Other patients with "good" platelets manage with much lower counts.

I get bleedings and blood blisters in the mouth, bruising and small nose bleedings when my platelets are lower than 30 000. Then there is a risk of brain bleedings so I have got a few platelet transfusions May-June 2010. Then I started to take Thalidomide and Prednisone. After 4 weeks my platelets increased from 22 to 43 and are now 112.
Kind regards
Birgitta-A

[Neel]

Hi brigitta,

Thanx for responding. Good that u have respondend well to thalidomide and predisone.

Is platelet transfusion recommened or required at lower counts i mean like 12000 or 20000 , if there is no physical symoptom of bleeding. My father as such do not have any kind of bleeding or purpura at lower count of 20000, but sometimes when he scratches his arm cos of itching, he gets red spots.

Kind Regards Neel

[Neel]

Hi,

One more question, does low platelet , i mean platelet reaching to critical level give any physical symptom or sign that platelet trasnfusion is necessary now, or one can only know thru the blood tests. Moreover can massive internal bleeding starts spontaneously or it starts gradually and alerts a person before hand.

regards,

neel

[Birgitta-A]

Hi Neel,
You know we never know how our blood vessels look inside the body. We can for example have enlarged veins round the lowest part of oesophagus. It is very dangerous if these start to bleed and the platelets are low. We can have weak spots in the blood vessels in the brain and easily get a brain bleeding and so on.

There are tests for platelet function like PFA-100:
http://www.platelet-research.org/1/techniques_pfa.htm

When we have low platelets we should try to avoid everything that can decrease platelets. Painkillers will often be dangerous. Here is a link about drugs and food that can decrease platelets or increase risk for bleeding:
http://www.pdsa.org/about-itp/warnings.html

Then you have perhaps seen that some members are taking Promacta/Revolade or Nplate for their low platelets with positive results.
Kind regards
Birgitta-A

[bebop]

at around 18k or below that is when my dads dr started plt transfusions. he had no bleeds but was in the critical range as a bleed can occur rather easily. I wish you all the best with yours. they give plts to keep from having bleeds when they are that low.

[Neel]

thanx brig and bepop. My best wishes r with u and ur family.

[bebop]

Neel extreme fatigue for my dad. dad is in the final stage though. his transfusions were stopped this week. easy bruising too. for no apparent reason.

[Neel]

Hi all,

Should a person go for transfusion of platelet if there is presence of petechiae & Purpura on the body ?

Neel

[Neel]

Hello bepop,

I am sorry to know about ur father, my prayers r with u and ur family

Regards,

Neel

[Birgitta-A]

Hi Neel,
Petechiae alone are not dangerous in any way. Like bleeding gums, blood blisters in the mouth and easy bruising that sign shows that blood clotting not is OK. I had all these symptoms when my platelet count was 65 at dx.
Kind regards
Birgitta-A

[bebop]

is your dad seeing an oncologist/hemo dr? the dr will be able to tell when transfusions are needed. they didn't start my dads until he went below 18k

[Neel]

Hello and thanx bepop and brig,

My father had developed purpura on legs and petechiae/rash of arnd 1 inch in dia on the chest today, so got his cbc done and as feared the platelet count was 10000 (it was 16000 in other lab). Went for transfusion. As such my father is not seeing any alopathic doctor, however we are taking treatment of ayuervedic physician. His medicine worked quite well initially, but later on his counts have started going down. the main cause of concern in last few months have been his TLC count and platelet count, but lately his Hb is also taking a dip. its 10 at present, TLC are arnd 1800 with 18% Neutrphil. after exploring on the net and going thru the experience of ppl on this fourm i wont say that the ayurvedic treatment isnt doing any good, but its not upto the expectations at present. My dad's last transfusion was on 26th october 2010, (his BMB was received and diagnosis was made on 19/10/2010) at that time his Hb was 6, TLC 1700 (went as low as 700) and platelet were 30000, got arnd 3 unit of platelet asphrisi and 6 unit concentrate and 10 unit of PRC from 13/10/2010 till 26/102010. Started this ayurvedic treatment on 23/10/2010 and never felt any need for any transfusion after that. after 26/10/2010, he has now again become transfusion dependent, and got 1 unit of platelet ashprisis on 2/4/2011 and one unit today. The ayurvedic medicine gave him arnd 5 months of transfusion independency. His highest Hb was in feb 2011 arnd 14, Platelet highest were in Nov 2010 arnd 300000, and TLC highest was in Nov 2010 arnd 6400.

Any advise wht to do in future,

Regards,

Neel

[bebop]

I have never heard of that type treatment or that type of dr. I would get him in with oncologist/hemo dr. maybe try him on vidaza. that seems to be a really good drug to use. also at his age he might could even get a bmt with success. don't waste too much time though. it seems his numbers are going down and treatment would need to start asap.

[Neel]

thanx bepop,

We had done HLA typing of his siblings, unfortunately none matched, we followed this with doctors, and they said that BMT with unrelated donor at his age is very risky. I have also serched net and the percentage of sucess varies but is arnd 25% for unrelated donor at his age. any suggestions ?


Regards, Neel

[Birgitta-A]

Hi Neel,
Very interesting that the ayurvedic treatment had so positive effect during 5 months. Now your father seems to have become "resistent" to that treatment and it will probably only give adverse reactions like low platelets - platelets are very sensitive to all kinds of drugs.

Have they done a BMB lately? You know your father can be near the limit for AML when his blast cells were as high as 18 % last fall.

I think like bebop that your father could try Vidaza with a little more than 50 % responders.

Many patients get SCT without a matching sibling - I don't think the risk for complications are increased if you have a good match. Then there is always cord blood.
Kind regards
Birgitta-A

[Neel]

Thanx brig,

It seems that he is getting resistent to the ayurvedic treatment, we will watch for some time and decide whether to continue or start soem other treatment, as far BMb, we got it done on 11th March this yr, his blast were 14%, diagnosis was same MDS RAEB-II. Infact his Hb was stabvle at 14 before BMB, however after BMB his Hb has also started going down .. Can the BMB have adverse efect on functioning of marrow ???

We have got in touch of numerous hospitals in India, and all of them have refused BMT without unrelated donor at his age.

As far vidaza is concerned, we dont have vidaza in india, only dacogen. But dont u think its more of a torture then a treatment ? means geting hospitalised for 7-8 days for injection and then getting transfusion of blood and platelets, or instaling a permanent port ? and then being isolated till ur blood counts improves and meanwhile one month is over and then repeating the same for the other month ? i mean where is the quality life here ?

Sorry i might be wrong but wht i infer from the vidaza or dacogen treatment is the above statement.. Am i wrong ???

Regards

neel

[Neel]

Hi all,

One more thing i forgot to add, i happen to have a chance of going thru the file of one MDS patient treated by the same very ayurvedic physician, he was also same age group, but had only low Hb, very high TLC , platelets were normal, his blast count in PS were arnd 35%. he was diagnosed in 2007, had the ayurvedic treatment for arnd 2 yrs and now the ayurvedic treatment has been stopped by the physician, syaing that he no longer needs treatment as he is all right now. he is till there hearty and fine, his latest coutns were in low normal range.

regards,

Neel

[Birgitta-A]

Hi Neel,
You know MDS is not one disease but many diseases with some characteristic symptoms. This means that we are very different and respond differenly when we are treated with the same drugs.

The BMB has no effect on counts. They take out a tiny part of the marrow.

Neal and Ruth are true experts when SCT is discussed - they can answer all your questions.

I have a port since Jan 2007 for transfusions and Desferal for iron overload - now I only get it flushed once a month since I don't get transfusions or Desferal.

It is interesting that you have Dacogen and not Vidaza - in EU we have Vidaza but not Dacogen.

You get the injections in a daycare ward after getting some drug to prevent nausea. You are not isolated. Your counts can decrease and you will perhaps need blood, platelets and Neupogen for low white blood cells but that doesn't happent to all patients. Search for Dacogen in this forum and you will find that there are many patients that have had good results with that drug.

Hope your father's fever won't come back!
Kind regards
Birgitta-A

[Ravi]

Hello Neel,

What ayurvedic treatment is your dad undergoing? And where? My mother of 62 years of age just had an AML relapse after 5 years in remission. She had chemo in 2006.

Now we have no options and are looking at herbal alternatives to bring down the blasts and revive the marrow.

Thanks
best wishes
ravi

Originally Posted by Neel

Hi all,

One more thing i forgot to add, i happen to have a chance of going thru the file of one MDS patient treated by the same very ayurvedic physician, he was also same age group, but had only low Hb, very high TLC , platelets were normal, his blast count in PS were arnd 35%. he was diagnosed in 2007, had the ayurvedic treatment for arnd 2 yrs and now the ayurvedic treatment has been stopped by the physician, syaing that he no longer needs treatment as he is all right now. he is till there hearty and fine, his latest coutns were in low normal range.

regards,

Neel

[Neel]

Hi Ravi my father took ayurvedic treatment from Vaid balendu Prakash ji of Dheradun. You can google and find abt Dr balendu prakash Ji. his email id is :- balenduprakash@gmail.com

best wishes for your mother and ur family.

regards,

neel

[freedom99]

Hi Neel;
My wife has MDS as described in my signature. Her transfusion protocol for platelets is 20,000, She gets blood work twice a week at the hospital lab who contact the treatment dept within a few hours and transfusions are set up twice a week. At this stage the platelets are staying at anywhere from 6,000 to 16,000 so transfusions are twice a week with 5 units each time.
The important thing to remember is that there are about seven different types of MDS and even within those types there are different types of reactions.
Even at 6,000 my wife has very few symptons of bleeding. There is a bit of bruising and a bit of bleeding that stops fairly quidkly. Whereas there are other patients with MDS where there is bleeding at higher platelet levels.
The nurse at the oncology treatment lab tells us to watch for bleeding that doesn't stop and if that's the case go to emergency where they will set up an emergency platelet transfusion. The interesting thing when platelets are transfused they go directly to the bleeding site. A miracle of the body.
Think about prevention of bleeding if platelets are low by not brushing teeth hard. no dental work, no aspirin or antiinflamatory meds. Ask your pharmacist or doctor which ones to watch for.
Your doctor should know what platelet level is serious for you and what to look for beside the obvious of a very dark stool, cuts don't stop or from hemaroids that don't stop.
There is the petechiae which is the red spots on the lower part of the legs. I've not seen them on my wife's legs. One doctor said that this is a sign a transfusion is necessary.
I've read somewhere else that with some MDS types that maintaining platelets at 5,000 is adequate. I wouldn't risk that myself. My doctor asked me if I was comfortable with 20,000 and I'm going with that.
My wife's hemaglobin is kept at 80. This number is a Canadian number I think which is different than what's used in the US. This involves two units of RBCS every two weeks.
Again, this disease can be confusing and the treatments having a different effect for everyone. At the same time if we are well informed of other peoples situations we can hopefully get a better overall picture of our own situation and can make better decisions. Remember, very few doctors make the decision for you. they give the pros and cons and ask you to make the final decision.