Please help me i dont know how to help my father

[ziad adore my father]

Dear friends, what does it mean Blast=3 in cbc test ?iv never seen blast in cbc test !!!!

[Neil Cuadra]

Blasts are immature white cells. For a normal person there are fewer than 5% blasts in their bone marrow. MDS patients may have bone marrow blast percentages higher than 5%, and may also have blasts in their circulating ("peripheral") blood. I assume that the 3 you see in the CBC results means 3% blasts in peripheral blood.

The percentage of blasts in peripheral blood and the percentage of blasts in the bone marrow are two of the factors used to classify MDS into subtypes. You said your father had 11% bone marrow blasts, matching the World Health Organization (WHO) RAEB-2 classification, while his 3% peripheral blood blast percentage fits the RAEB-1 classification. Which classification they consider your father to fall into may also depend on whether his blood or bone marrow contains granular material called "Auer rods".

His classification helps the doctors match his status to categories used for medical research and patient statistics, but every patient is unique and must be treated that way. What's important is that he is having appropriate treatment and that his health is continually monitored and side effects minimized to the extent possible. You're doing the right thing by learning more about this disease and what can be done to help your father.

[ziad adore my father]

Finaly we started vidaza treatment at hospital, our hematologist took that decision after his the last BMB which showed 13% blast and he seems to be confused to declare if it was an mds transforming very fast or an already acute leukimia. The problem is that now we are at the 3rd day injection vidaza under skin with 140mg divided into 2 needles 70mg each, honestly dad is getin worse day by day and so fast, last cbc test showed hmg: 8.0 wbc: 1700 plateletes: 13k, and there is blasts in peripheral blood about 12%, and ferritine is 1200.
So sad to see him so so weak, not eating well, cant walk alone at all, and today some nose bleeding who did not stop till now. I feel realy guilty to start vidaza, he was better when he was home now he is worsen day by day,dono what to do, afraid from infection, afraid from night bleeding from nose and what shoul i do??? Who can i stop nose bleeding its weekend and no doctors only nurses they know nothing regarding.

Is it possible to bleed from nose before any sign like leg petechia???

[usaf1125]

Originally Posted by ziad adore my father

Finaly we started vidaza treatment at hospital, our hematologist took that decision after his the last BMB which showed 13% blast and he seems to be confused to declare if it was an mds transforming very fast or an already acute leukimia. The problem is that now we are at the 3rd day injection vidaza under skin with 140mg divided into 2 needles 70mg each, honestly dad is getin worse day by day and so fast, last cbc test showed hmg: 8.0 wbc: 1700 plateletes: 13k, and there is blasts in peripheral blood about 12%, and ferritine is 1200.
So sad to see him so so weak, not eating well, cant walk alone at all, and today some nose bleeding who did not stop till now. I feel realy guilty to start vidaza, he was better when he was home now he is worsen day by day,dono what to do, afraid from infection, afraid from night bleeding from nose and what shoul i do??? Who can i stop nose bleeding its weekend and no doctors only nurses they know nothing regarding.

Is it possible to bleed from nose before any sign like leg petechia???

Ziad, I wish I could offer you something other than my prayers for your father. MDS is a very unusual condition, I have been getting blood infusions since 2004, I have met many others with MDS during this time. It affects every one differently I have been having nose bleeds for several years, always at night. I can tell that you love your Father very much, do not feel guilty, there is nothing you can do, except to love your Father, he is a lucky man to have you for a daughter. May God give some doctor the way to stop the progression of MDS. God bless you, and do not blame your self for any thing. Stay strong

[Birgitta-A]

Dear Ziad,
Perhaps your father has too low counts to get the full dose of Vidaza. His doctor could delay the injections and give your father a lower dose. You know some members of this forum has received 50 mg/kvm body surface instead of 75 mg during 10 days instead of 5 or 7 days with positive effect.

Yes, we can bleed from nose, mouth and intestines without petechia. You know we have about 5 l blood so a nose bleeding hardly ever is dangerous.

Hope Vidaza will have a positive effect and your father fell better!
Kind regards
Birgitta-A

[ziad adore my father]

Dear birgitta;
Our hematologist insist to give him vidaza today although all these low blood count, and he decide to give him 1unit bag of platelets an 2 units of blood, and the dayli dose of vidaza is 140 mg is it too much?? Should i talk to the doctor about this high dosage? Can vidaza be bad treatment more than the right treatment? How can he stand for 5 or 6 month taking blood, platelets and in risk of daily infection, its really a hard desease, we can not smile anymore.

[bebop]

it is pretty normal for counts to go down during chemo. your dad can refuse a treatment though if he chooses. it sounds like your dad's dr is being very agressive in his treatments. I am praying hon.

[Birgitta-A]

Dear Ziad,
You know most patients get 75 mg Vidaza per kvm body surface. You can calculate your father's body surface if you know his height and weight: http://www.ultradrive.com/bsac.htm. When I use this calculator it shows that I should take 130 mg Vidaza/day so I don't think 140 mg is a high dose.

Good that he is getting blood and platelets! How about Neupogen injections for low white blood cells?
Kind regards
Birgitta-A

[ziad adore my father]

Dear Birgitta,
Thank you for helping me how to calculate vidaza dozage actualy i was surfing net how to calculate it 
Well as i told you they are giving him supportive care blood and plateletes, the doctor waited till the last point of hemoglobin 7,3 and he decide to give him 2 units and he gave him plateletes when also he got severe low counts, in his opinion to avoid giving him lot ofsupportive care which is not good because his body will be refractory to plts and the iron will be so hight to a point of toxication. But he told me (hematologist) that we can never give neupogen with vidaza maybe after his first cycle he will.

Today cbc showed:

Wbc: 1700 hmg: 10.0 and plts: 75.000

But im worry about is that im not seeing my dad refreshing after the transfusion of blood, he still breathless, tiered, cant walk as before (1month) he is totaly a new weak person need to sleep all the time and dono why.

Tomorrow will be his last day injection, he will finish the first cycle, but how to go home with the risk of geting low blood count again!!!

No more bleeding from his nose nor from his hemroids.

Tks god gave us such forum and such nice people to discuss our worries.

[Birgitta-A]

Dear Ziad,
Very good counts ! No sign of that your father is refractory to platelets. You know all kinds of chemo can give tiredness. Then many patients get nausea even if they receive treatment to prevent that. It is important to try to eats well - many patients try special drinks with protein and vitamines.

When patients get Vidaza the adverse effects usually will come after the first cycles and the response later. More than 50% of the high risk MDS patients respond.

Don't worry about the iron overload - as you know we can have high ferritin levels during many years before we get symptoms from the liver or the heart.
Kind regards
Birgitta-A

[ziad adore my father]

the new bad news today is the constipation...
this is the third day for dad constipation, i tried for him Forlax twice a day which did nothing and Glycerin suppositories, no response also

Dad can not walk alone he wait me till i finish work to help him to walk few meters at home no more cause he feels breathless right away, so advice to walk will be useless

just wana ask a question about vidaza:
can we see any improvment in bone marrow after the first cycle of Vidaza ?
any signs can give us hints that this treatment will work hopefully in the future ?

[Chirley]

Hi, yes that Vidaza can cause major constipation. My only suggestion is lactulose syrup every day whether he is constipated or not.

Sorry he's too breathless to walk, this comes with the disease. Maybe they should increase the cut off point for transfusion. Instead of transfusing at say 85 maybe they should transfuse at 95 if you see what I mean.

Regards

[ziad adore my father]

this morning dad had nose bleeding, 1 drop every 4 or 5 minutes, i went quickly to laboratory to bring someone to do for dad the cbc and now im waiting the result...i think he is facing sever drop in platelets because there some petechiaes in his arm...im really in bad mood, every 5 day his platelets drop...is there any drug to prolong the life of his platelets im afraid his body become a refractory of plts..

[Birgitta-A]

Dea Ziad,
Your father has now finished his first cycle of Vidaza. This period is very difficult for many patients because all counts are often low.

It is not possible to see any bone marrow changes after one cycle - most patients are evaluated after 6 months.

Platelet response after one month may predict response to Vidaza:
http://www.mdsbeacon.com/news/2011/1...-mds-patients/

Too bad with constipation and nose bleeding. As Chirley wrote you have to prevent constipation with for example lactulose syrup. He has perhaps only been eating small amouts of light food (that is good for him) and you can't expect much result from that kind of food.

I don't think he is refractory to platelets because they were 75 one week ago.

Don't give in - as far as I understand he is getting very good supportive therapy and your support is of cause important too.
Kind regards
Birgitta-A

[ziad adore my father]

my doc ask me to take dad urgently to hospital because his cbc test showed
hmg: 7.5
plts: 15k
wbc:2

so im taking him now to give him 2 units blood and 1 unit platelets

pray for me

thank you for your support

[Birgitta-A]

Dear Ziad,
We all hope that your father will improve after the transfusions. Now his doctor will perhaps give him Neupogen or a similar drug?
Warm regards
Birgitta-A

[Susan]

Birgitta,

You are an extraordinary and beautiful person to offer such good and frequent support and suggestions to Ziad and others:-) Swedes and Sweden are a good role model for the world. Hope you are doing well.

Suz

[Birgitta-A]

Hi Suz,
Thank you for the kind words ! You know I learn a lot myself when I look for info about our disease.

I feel OK. Now I have been taking Thalidomide (very low dose) and Prednisone 19 months and I am still responding with HGB 13.5, WBCs 4.3 and platelets about 90.

Hope you are doing well too!
Kind regards
Birgitta-A

[ziad adore my father]

well dear friend, i admit my father to the hospital to give him 2 units Blood and 1 unit platelets due a drop in Hmg and in platelets and here is there results:

Hmg: 10.0
wbc: 2.3
Platelets: 70000
Neutrphil: 0.42
blast (in peripheral Blood) = 0

i hope that he can keep the level of cbc stable without any drop in any of each...

The question IS :

can i give him twice a week eprex injection and neupogen, in order to maintain RBC and WBC level ?

one doc told me No, and take them now and give vidaza time at least to the forth cycle till we can kill most of the blast than we will restart the eprex and neupogen...

another Doc. told me yes sure, right away, give him both of them...

now im confused and i dont want to wast time and give him the best treatment.

[Birgitta-A]

Dear Ziad,
It is very difficult to have two doctors who give you different advices. As you can see at other posts where other members have family members with low counts during Vidaza treatment many doctors give as much supportive therapy as possible. This means blood and platelet transfusions and in some cases Neupogen or similar drugs. I don't think it is common to give Eprex or similar drugs.

Your father's neutrophils are very low - they should be at least 1.5 otherwise he can easily get an infection.

His platelets are again very good ! No sign of that he is refractory. Very good with no blast cells in his blood!
Kind regards
Birgitta-A

[ziad adore my father]

Thank you Birgitta, what do you think we can do to raise neutrophils ?? Is neupogene is the solution im afraid from infection as you said...

[Birgitta-A]

Dear Ziad,
All counts should increase slowly between the Vidaza cycles but during this phase the patients have to be very careful and try to avoid infections that will decrease the counts. We can get infections from other persons and from food. There are special sites about living with low neutrophils - neutropenia.

When the neutrophils are very low we can get infections from bacteria, virus or fungi from our own body and these infections can be difficult to treat.

Neupogen is easy to monitor - we can get one injection every day. When I had neutropenic fever after 3 infections 2007 I received Neupogen every day until my WBCs were normal. My bone marrow is very fibrotic and I had to continue to take Neupogen 2 or 1 injections/week until Nov 2011 when I had been taking Thalidomide 17 months.

Hope your father's counts will increase and that he will feel better!
Kind regards
Birgitta-A

[ziad adore my father]

Is it necessary to give dad same phenotyped blood type when he needs transfusion? Because some doctors in local hospital search for same phenotype blood to avoide refratory action, and some others do not give importance to the phenotype, so what is the true answer?

Dad nose start bleeding every time his platelets reach 20-30k what can we do to stop that kind of bleeding to avoid him to swallow blood during sleping and the accumulation of blood near arround mouth...

Best regard

Ziad

[Birgitta-A]

Dear Ziad,
Many patients have so called irregular antibodies in the blood and need cross matched blood: http://en.wikipedia.org/wiki/Cross-matching

I have a lot of irregular antibodies and it takes many hours to find blood for me so I always have a test done before the day I will have a tx. It is very important to try to prvent hemolysis and more antibodies.

When my platelets were low I bought sesame oil in the pharmacy to prevent dry membranes in the nose and it helped me. Don't try other oils like flax seed oil that can increase bleeding.
Kind regards
Birgitta-A

[ziad adore my father]

Today i went to buy for dad the neupogen injection, it seems that nobody have stock due to a shortage from the dealer, i called our local doctor to ask about substitute he ask me to buy Neutromax, i called the our other doctore he told me No, bring Zarzio !! Qhat is the difference and which one is better? Or which one has the better result? Should i wait till i find Neupagen??