Please help me i dont know how to help my father

[ziad adore my father]

My father 79 years old diagnosed for MDS in august 2011, maybe due to the IMMURAN, that he used to take since 1998.unfortunately we discovered in august 2011 that he had severe anemia, low platelets, low wbc.
We started to give him 2 kinds of drugs to avoid blood transfusion: Eprex, neupogen and it worked for 4 month and retained his hemoglobin and wbc in normal range, until everything dropped again ex: wbc:1900, hemog: 8.5 and platelets: 20000 (1 week ago) and seems eprex doesnt work any more.

The Professor of hematology at the American University hospital in Beirut checked him and did for him biopsy for the bone marrow, and Flow cytometry and we got this result:

Multiple gates on this low quality bone marrow using cd45 expression reveal a mixture of granulocytic elements, lymphocytes, erythroide cells, and blast.
the blast 11% are positive for cd13 cd33 cd34 cd117 and hla-dr.

bone marrow aspirate slide:
hemodiluted bone marrow showing one tiny hyper cellular spicule with scattered lymphocyte.(but no blast are seen)

cbc:

wbc: 1900
rbc: 3.51
hemoglobin: 11.3
hematocryt: 33%
mcv : 94
mch:32pg
rdw: 19%
platelets:20000


Ferritine(ria) 1015ng/ml
V. B12: 1734pg/ml
fer serique: 99ug/dl

yesterday we gave him 2 units of blood to let him feel better.

plzzz anybody help me about how serious is my father case, i cant live without my father i cant imagine his absence doctors says we cant do anything for his case specially in his age, Vidaza make him worse,
plz someone give me a hint how to get his platelets to normal...i dont want him to bleed then give him platelets...i need someone to give me hope i cant work im not eating thinking about him 24 hours a day

ps: doctors said if we gave him platelets he will loose them in 1 week so no mean to give him plat. until bleed show up.

any new drug can help??? plz tell me

[Birgitta-A]

Hi Ziad,
You know low platelets are always a big problem for us. There are no drugs approved for MDS patients but patients with another disease (Immune Thrombocytopenic Purpura) can get Promacta (Eltrombopag/Revolade) or Nplate (Romiplostim). Unfortunately they can both increase bone marrow fibrosis and Nplate can increase blast cells (immature cells).

There are still no reports about Promacta. Here is one about Nplate:
http://www.pslgroup.com/news/content...2578990056E556

Several members of this forum have had positive effects when they are taking these drugs.

Many patients with MDS are getting platelet transfusions. It is true that they don’t last many days but it is better to receive transfusion than have a serious bleeding.

Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006. Transfusion dependent from dx with HGB 7.0 Received 142 units of blood until I started treatment with Thalidomide 2010 with very good results. HGB now 13.5 and platelets have increased from 22 to 90.

[ziad adore my father]

Thanks Birgitta for your help

just want to ask you what about thalidomide? my father already has peripheral neuropathy and i heard that this drug may cause this kind of neuron desease...?

Just one question plz, sorry if im bothering you, but we are facing now the high ferritine and high iron, my doctore ask to give my father ""Exjak"" but i read about it that it is so dangerous for the Risky Mds patient specialy with low Platelets count and low Hemoglobin, what do you think? and What to do? because as we all know High Iron in blood may damage tissue and organs

thank you very much for anyone who can help me

ziad.

[usaf1125]

I'm 79 and have had MDS since 2003, I have no idea what any of my counts are and I don't want to know. The only thing I check is my crt level and my ferritin. I get 2 units of packed red cells evey 2 weeks, some times 3 based on my crt level. I inject my self once a week with 40,000 ML of Procrit, I take 500 MG of ExJade every day for the iron overload. I worry more about the iron than I do the MDS. Not much I can say to help you, I live every day to the fullest I can. Fatigue is my biggest problem, lose energy very fast. I can tell that you love your father very much, give him all the love that you can. It is a crazy condition, I know several people that have gone into remission for a few years. Pray and hope, stay has positive has you can, don't give up hope

[bebop]

y dad was 80 when he was diagnosed. they would not give him platelets until they got way lower than 20000. I think around 18 is when they even talked about it. I don't have any answers to your questions really other than love him and be with him as much as possible. I know that feeling of not feeling like I could live without him but I have for the last 7 months. Make sure you are taking him to a specialist for mds. Pray. (((hugs))))

[ziad adore my father]

Dear usaf1125,

how much is your platelets? and isn't it dangerous to take Exjade if my father has 20k platelets? im afraid to give him that drug since it was written that MDS patient with low platelets should not take Exjade!!!!!

pls answer me
my father has 1050 ferritine and i know that its dangerous for his organs!!!

thank you all

ziad

[Birgitta-A]

Hi Ziad,
You are right about Thalidomide and neuropathy - I can only take a very low dose, 50 mg 4 caps/week, because Thalidomide decreases my white blood cells. Then the risk for neuropathy is low.

Many patients receive Revlimid, that doesn't give neuropathy, but Revlimid often causes low platelets. Like Thalidomide the drug should be given in combination with Prednisone or a similar drug for best response.

When your father's ferritin value is 1050 he doesn't need Exjade or any other drug for iron overload. It takes years for the iron to damage the liver, the heart and other organs. When I got blood transfusions every week my ferritin value was 5600 though I got Desferal and a low dose of Exjade (500 mg/day because the drug decreased my white blood cells). My liver tests have always been OK and I don't think the iron overload has cause so much damage. I have not got blood transfusions since Sept 2010 and my ferritin value has very slowly decreased to 866.
Kind regards
Birgitta-A

[riccd2001]

Where I live docs recommend that when serum ferritin exceeds 1000 and you've had between 20 and 40 units of PRBCs, then it's time to start one of the medically accepted chelation treatments. There are a growing number of 'alternative' suggestions in this forum, but I'd be very careful in trying ANY of those suggestions.

However you decide to proceed with chelation, make sure you have a known baseline for creatinine. Many of these meds alone or combined can cause increasing dangerous creatinine levels which can lead to serious non-reversible kidney damage.

[Birgitta-A]

Hi riccd2001,
You know you have low risk MDS and will hopefully have many years before you. This kind of variables are important when the doctor decides about iron chelation.

Ziad's father has to concentrate on improving the counts. When the white blood cells are low we have to avoid infections - infected persons and food that can be infected. Remember that many drugs can decrease platelets - most pain killers are dangerous.

Neupogen and similar drugs can increase white blood cells and platelet transfusions platelets.
Kind regards
Birgitta-A

[usaf1125]

I have no idea of what my platelets are. My iron levels were over 3000 for years,taking the ExJade has finaly brought it down to 2850, it has gone as low has 2385. Reading the instructions that come with the ExJade, I shouldn't be taking it, but it's one more thing thats keeping me alive. When I get a flare up of my Chron's Disease, I have to skip the ExJade for a couple of days, this maybe why the level goes up and down.

[ziad adore my father]

Dear Sirs,

can plz anybody tell me why does Eprex injection stop giving good reaction on my father RBC, although since 3 month his hemoglobin increased from 10.5 to 14.2 BUT now and gradually his hemoglobin was down so fast from 14.2 to 8.6 and that was frightening me and i went like crazy to visit our hematologist who ask me to give my father urgently 2 units of blood!!!

so does eprex stop working by itself?? or because the level of blast is increasing which cause eprex useless !!! doctor had no idea and he did not answer my question

PS: i decided not to give my father the Exjade although he have 1100 ferritin level now, but i was afraid to give an elderly this kind of havy drug and afraid to affect his creatini level or kidney work....what is your opinion ???

[Greg H]

Hi Ziad,

I think you made the right decision about Exjade for now. There's very little good research that shows iron overload affects survival in older MDS patients. Perhaps, once your father's blood counts stabilize, you will have an opportunity to worry about Exjade.

Eprex is a synthetic version of EPO, a chemical produced naturally by the kidneys that stimulates the bone marrow to make more red blood cells. Patients who already have a high level of EPO are less likely to respond to Eprex. Perhaps this was the case with your father. Most patients who do respond to Eprex eventually stop responding, but usually after three or four years rather than three or four months.

Are your father's doctors suggesting other drugs? Did he already try Vidaza or Dacogen?

Take care!

Greg

[Donna E]

Hi, I am so sorry you are going through this right now with your Dad.
I too was very close with my Dad . . . a true blue Daddy's Girl. My Dad had MDS. For many years he did well with Procrit and Neupogen. He used to find that his platelet count went up after eating Pineapple. Try it . . . it can't hurt. I know that it is so easy to feel frustrated that you can't do more for your Dad. The most important thing is to make sure he has a doctor who has a lot of experience with MDS. The second this you can do (which you are doing) is try to get as much information and help as you can on the forum. The third thing is LOVE, LOVE, LOVE. Be there as much as you can . . . treasure every minute you spend with your Dad . . . let him know how you feel about him . . . pray and hold onto HOPE. I am here if you just want to talk. I know how this disease affects family members. When you love someone, you can't help but go through a myriad of emotions yourself. Remember to find ways to re-charge your batteries . . . bubble baths . . . walks in the park . . . nurture yourself while you nurture and love your Dad.
Know you are NOT alone . . . we are here for you.

[Donna E]

I am so sorry for the loss of your Dad. This week, in 2009 my mom, sister, brother and I were taking care of my Dad. He decided to end his fight and died on Christmas. I have been going through so much anxiety this week, re-living that last week . . . My Dad had quite a courageous fight with MDS. He taught us so much . . . I have seen how much LOVE and prayers can do in the fight with this disease. I pray that you ALWAYS feel your Dad's spirit with you . . . treasure your memories.

[ziad adore my father]

dear friends,

you cant imagine how much is hard to stand up watching your dad day after day getting worse and worse and you can't do anything
Our hematologist did not give us any drug to stop or delay the disease, since my dad is around 80 and his health cannot afford vidaza or any similar drug

what make me crazy is the drop of his platelets every week i check his cbc, and after that i live in a worry life always waiting him to bleed from somewhere i don't know.

i dont want him to leave me, i love him so so much like any person who love his father, when i sit with him to spend as much time as i can, i feel guilty since im loosing time without doing hard work to find anything any drug to make his life better.

im using neupogen for the drop of white blood cells
im using Eprex hoping it can stand his RBC for 1 month between transfusion because transfusion and going to hospital frequently made him tired and hopeless.
finally and the most thing im worry about is the PLATELETS !!! NOW he has 17k 1 week ago 25k 2 week ago 35k and so on.... a severe drop appear to occur this lately weeks, here in lebanon (middle east, beirut) we find a big problem to bring i unit of Platelets and hospital doesnt help us at all, we have to find people from anywhere and beg them to donate. i dont want my father platelets to get lower i always ask doc to give me anything to make his platelets stop droping but always no answer from him

what a disease !!!!!!!!!!!!!!!!!!!! ur lover disappear gradually in front of and u cant do anything... my god!!!

i can hear him breathless all time, iv never seen dad like this, even after taking two unit of blood and get his hemoglobin 12 and still i find him tired and breathless can anybody tell me why ???? i check his heart and it was not bad, checked his lungs nothing appear...so why this tiredness???

Life is so hard dear friend.

[Neil Cuadra]

Have you contacted the Lebanese Red Cross to ask about platelet supplies and what you can do to get platelets for your dad? Maybe they run platelet donor drives and can tell you ways to help with that process.

[bebop]

the breathlessness is probably due to his platelets being low as well as the hemoglobin. they can do supportive care which is the blood and platelet transfusions or at least they do here in the US. not much else at this age unfortunately. like others have said though you are not alone

[Greg H]

Hi Ziad,

I'm so sorry to hear about your Dad's dropping platelets. I know that Birgitta mentioned Promacta (Eltrombopag/Revolade) or Nplate (Romiplostim). Both of these seem to be able to increase platelets in some MDS patients. Is it possible you could obtain access to one of these?

Take care!

Greg

[ziad adore my father]

Dear friends,

11% blast in BMB is it a high risk MDS RAEB-2?? and does it mean that MDS is transforming to Leukimia ??

why Hg droped suddenly from 11.5 to 8.5 in 2 days without sign of bleeding and does it mean any thing in transforming MDS, and is there any cure for that drop?

thank you

[bebop]

we thought for sure my dad was bleeding internally when his dropped like this but found out it was his bone marrow was not making red cells. they can give him blood transfusions to help.

[Birgitta-A]

Hi Ziad,
It is true that increasing blasts isn't a positive sign but as you perhaps know your father has not leukemia when his blast cells are less than 20%.

When his HGB was 11.5 he perhaps was dehydrated - he can have been drinking too little. Then the blood is concentrated and the HGB higher. It is important to drink enough in order to help the kidneys to get rid of toxic products from the blood.

Another explanation is that he has hemolysis - the red blood cells burst too early. A normal red blood cell lives about 120 days but many of us have blood cells that don't live that long and transfused cells never live 120 days.

There is no fast cure for his symptoms. Revlimid + Prednisone work fast - within weeks - but will probably decrease his platelets. Vidaza and Dacogen often decreases all counts initially and a positive response can take up to 6 months.

Supportive therapy - that he already receives - with blood and hopefully platelet transfusions and Neupogen injections or similar drugs for white blood cells. Look out for infections that can decrease all counts!
Kind regards
Birgitta-A

[ziad adore my father]

Dear friends

there some blood spots on my father's legs, is that sign of bleeding or sign of low platelets due some scratches on the skin??

can the MDS patients take antibiotics if they got flue or it may harm them ?

my father has previously neuropathy desease since 1991 and he takes what we call it IVIG intra Venus Immuno globulin, can this drug affect him as an mds patient or can reduce platelets in a way or another??

sign of blood spots make me afraid a lot, does he need platelets? last time cbc showed 17k platelets but no sign of bleeding...is it the time to give him platelets?? and for how long should he go and take platelets????? since plts does not stand in the body more than few days?? so scared so worry about him

[Birgitta-A]

Hi Ziad,
The description of the blood spots on your father's leg is too vague - I don't know what that can be but I don't think it is dangerous.

Nobody should take antibiotics for flue - it is a virus infection and antibiotics won't help him. Try to avoid infected persons!

I don't think IVIG can decrease platelets - patients with a special platelet disease called Immune Thrombocytopenic Purpura are often treated with IVIG.

Some patients like me have dysfunctional platelets - they don't function well and then we need platelet transfusions when our platelets are less than 20. Other patients manage well with very low platelets - perhaps your father belongs to this group.

There is no rule for how long we can get platelet transfusions - unfortunately the platelets will decrease faster and faster after each transfusion in some patients.

You don't write anything about HGB and white blood cells - hope they are holding!
Kind regards
Birgitta-A

[bebop]

blood spots are called petichi sorry not sure of the spelling. it is caused from low platelets. it sounds like he needs platelets. what is his dr saying at this point? do you go with him to his appts?

[ziad adore my father]

hi everybody and wish you all a happy new year

please tell me how Hemolysis can be treated?? my father feel so tired, breathless and high iron ferritine and blood transfusion does not stand for more than 1 week

is there any treatment for Hemolysis in MDS patient ??

thank you.