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  #1  
Old Fri Dec 31, 2010, 02:07 PM
S001 S001 is offline
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Low platelets

My dad's platelets have taken a big dip, down to 6K at one point. 2 days after being transfused with 1 pack, his platelets were at 10K. I should guess his bone marrow is not producing platelets anymore?

His bleeding has been the major cause of concern and right now he is being transfused with another pack of platelets. His WBC's have jumped to 20+ as well, which means there is disease progression. For the time being, it is important for my dad's recurrent bleedings to be controlled and for this, platelets transfusions are the only way I guess.

Is there anything else we can try to bump the platelets? I've read of Nplate and Promacta, but the views are mixed, so I don't know.

Praying for strength to deal with this. Things don't look good at the moment.
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  #2  
Old Fri Dec 31, 2010, 03:51 PM
bebop bebop is offline
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yikes that is pretty low. my dads were down to 8 this week. it is so scarey when they get that low. they are doing a type and cross match for Dad's now so they tend to hold up a tad bit better. have they tried that with your dad?
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  #3  
Old Fri Dec 31, 2010, 04:44 PM
S001 S001 is offline
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I don't think so. What exactly should I ask them to do?
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  #4  
Old Fri Dec 31, 2010, 05:48 PM
akita akita is offline
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Dear S001,

i`m so sorry that your fathers health status is not good and incude him in my prayers. Hope so that you can find a solution for his platelets.

Kind regards Maraarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #5  
Old Fri Dec 31, 2010, 10:57 PM
bebop bebop is offline
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Dads plts are one donor or maybe 2 at the most. he use to get the pooled ones. ask the dr if he should get the typed and cross matched ones.
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  #6  
Old Sat Jan 1, 2011, 05:04 AM
Birgitta-A Birgitta-A is offline
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Low platelets

Hi S001 and Bebop,
When the platelets are less than 10 you could perhaps ask if there is any possibility to get Nplate or Promacta? Your fathers don't have anything to loose. If they get increased blast cells the drug can be stopped and the other adverse reaction - increased fibrosis - takes months to develope. You know that there are members of this forum treated with Nplate or Promacta with positive effect on the platelets.
Kind regards
Birgitta-A
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  #7  
Old Sat Jan 1, 2011, 03:32 PM
bebop bebop is offline
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thanks hon. is that considered a supportive care drug? dad is only on supported care at this point.
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  #8  
Old Sun Jan 2, 2011, 04:28 AM
Birgitta-A Birgitta-A is offline
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Nplate and Promacta

Hi Bebop,
No, both Nplate and Promacta are only approved for the bleeding disease Immune Thrombocytopenic Purpura, so it is always difficult for a MDS patient to get the drugs off record. Hope your father's platelets function well and that he will get a higher count after platelet transfusions!
Kind regards
Birgitta-A
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  #9  
Old Sun Jan 2, 2011, 09:28 AM
akita akita is offline
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Compassionate or Emergency Use of Promacta or Nplate`?

Hi Birgitta,

what do you know about the probability and procedure getting access for MDS-Patients to Promacta or Nplate?
On the FDA and ASCHO Websides there are several ressources for information, which i partly read.(The educationsal programs at the ASCO - University for more precise information consists of videos which take some time to study. It is possible to access this free-of-charge programs with a guest account to ASCO. An die FDA-Webside you can read the regulations for extended use of investigational drugs such as Promacta and Nplate. I have been on the webside of Nplate/Amgen,but not specially searching for extended use (programs).

As you mentioned the difficulty approaching this access, - what is your knowledge, are your web/forum-based experiences in this materia?

FDA approval would be one problem. The other being the financial issue. As i read, sometimes the drug companies do not charge the patients, but i have no more exact informations concerning promacta and nplate in the cases of individual extended emergence and/or compassionate use.

Another possibility in such cases might be private or organisatiorial support.. Do you know anything about it?

Kind regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #10  
Old Sun Jan 2, 2011, 09:34 AM
akita akita is offline
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Trying to apply for extended use of Promacta or Nplate?

Hi Bebop,

if there would be any chance, would you consider to try getting an emergency use approbation for promacta oder nplate?

Has your father any financial ressources, e.g. to pay some money to the doctor for the applying oosts?

Kind regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #11  
Old Sun Jan 2, 2011, 10:15 AM
Birgitta-A Birgitta-A is offline
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Nplate and Promacta

Hi Margarete,
You know when you live in Wien (as you do) or Stockholm (as I do) FDA has nothing to do with our drugs. Both Nplate and Promacta (Revolade in EU) are approved in EU for Immune Thrombocytopenic Purpura.

If your doctor will prescribe Nplate or Promacta off record he/she can do that. In Sweden (with very high taxes) we never pay more than 180 US§/year for drugs (the Neupogen injections that I take twice a week costs 100 US§/injection). I don't know anything about costs for drugs in Austria.

Then there are trials for MDS patients with both Nplate and Promacta. If you look at clin trials gov you can see if there are any centers in Austria that participate in these studies.
Kind regards
Birgitta-A
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  #12  
Old Sun Jan 2, 2011, 03:02 PM
akita akita is offline
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Hi Birgitta,

thank you for your answer. So i know that you don`t have experience with the US-Situation. I browsed the US situation and regulations.

There exists the possibility for extended access to investigational drugs in special individual cases in the US. I wil post the links to the documents referring to that. But first i wanted to read, if Bebop would like to go further in this issue.

And as i don`t have voice-function actually in my laptop i wanted to go to a nearby internet-coffee-shop to watch the educational program for doctors at ASCHO Internet university concerning the handling of these extended access situations. Its a sort of juridical-medicine-mixted issue, quite complicated to help here in this forum-frame, but perhaps it is possible. I would like to help Bebops father, if he personally also would decide to take promacta or nplate. And in case of no success we in the forum have learned for future similar situations..

Later writing again,

Kind regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #13  
Old Sun Jan 2, 2011, 04:15 PM
Greg H Greg H is offline
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Clinical Trials

Bebop,

Is your Dad in hospice with supportive acre only at this point? I'm sorry I have forgotten whether that is the case, though I do recall a conversation about that earlier.

In any case, there may be some clinical trials out there for NPlate (trade name Romiplostim). Here's one, though the GA, FLA, and SC locations already seem to have filled their complement. You could call the Amgen (that's the drug company) call center at 866-572-6436, or get your doc to do it.

Promacta is also being trialed for MDS, you could call the Glaxo SmithKline clinical trial number at 877-379-3718.

The trials always have various criteria in terms of disease, disease progression, and physical condition. But they might be worth exploring. There's generally no cost to the patient for the drug.
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #14  
Old Sun Jan 2, 2011, 09:23 PM
Greg H Greg H is offline
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Hey Bebob!

Here's another clinical trial of Promacta.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #15  
Old Mon Jan 3, 2011, 02:47 PM
Birgitta-A Birgitta-A is offline
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Nplate and Promacta

Hi Margarete,
Since I had low platelets at dx 2006 I belong to a support group for patients with platelets diseases. Here is some info about Nplate and Promacta.

The persons working at the FDA are afraid that the growth factors for low platelets should increase the risk for cancer and give other severe adverse effects like the EPO drugs, that stimulate the bone marrow to make more RBCs, can do.
http://www.fda.gov/Drugs/DrugSafety/.../ucm109375.htm

That’s why both Nplate and Promacta got risk management programs before approval:
http://www.nplatenexus.com/about.html
http://www.promactacares.com/dispense.html

The first member of this forum who received Promacta as far as I know – Kirby Stone - posted about how to get the drug. If you search for Promacta you can read that he got it through Promacta cares.
Kind regards
Birgitta-A
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  #16  
Old Mon Jan 3, 2011, 03:58 PM
bebop bebop is offline
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I don't think so hon. right now if it weren't for his medicare and other insurance he would not be able to afford his transfusions. novembers bill alone was right at 30k. that is for blood and plts only! outrageous if you ask me. not sure Dad would even consider it if it were free though.

Quote:
Originally Posted by akita View Post
Hi Bebop,

if there would be any chance, would you consider to try getting an emergency use approbation for promacta oder nplate?

Has your father any financial ressources, e.g. to pay some money to the doctor for the applying oosts?

Kind regards,

Margarete
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  #17  
Old Mon Jan 3, 2011, 07:24 PM
akita akita is offline
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Bepob,

>I don't think so hon. right now if it weren't for his medicare and other insurance he would not be able to afford his transfusions. novembers bill alone was right at 30k. that is for blood and plts only!
outrageous if you ask me. not sure Dad would even consider it if it were free though.[/quote]

look, if your father tried to get Promacta just by the way forum member Kirby Stone did (see the link which Birgitta provided) and would get it and in the case it helps him, this could safe some money for platelet transfusions,when your father would not need these transfusions any more with an increased platelet count through Promacta (or Nplate). Maybe the chance of saving costs could motivate him to agree to a further treatment which he needs now. The prize of e.g. Promacta, even if not cheap, might be lower than that of the numerous platelet transfusions!

This could be an argument for you to argue with the "other insurance" of your father: if they would not agree to pay promacta/nplate your father would have no chance coming off the more expensive platelet transfusions..

I don`t know the special regulations valid for your insurances - you also have a private one, as you wrote, but as Promacta is not an investigational drug, is not given by extended access, but due to a FDA approval, your insurances probably have to pay in that case? . Promacta is approved by FDA only for ITP. But perhaps your father has got this indication too? Talk to his doctors concerning this detail. In not accepting platelets there is a severe immune component and a read from cases who where diagnosed for both : MDS and ITP (...?)

(Why are you sure that your father is high-risk MDS patient?)

Kind regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD

Last edited by akita : Mon Jan 3, 2011 at 07:48 PM.
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  #18  
Old Mon Jan 3, 2011, 07:43 PM
akita akita is offline
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Hi Birgitta,

your posting really provided excellent special information.. By your membership in the other forum you got a lot of knowledge!

Maybe it would be advisory if Bepob contacted Kirby Stone for more precise informations about how he and his doctor managed the Promacta-medication..

Promacta is - as i understand - already approved, - for ITP and under these restricted provisions. If Bepobs father gets the medicament by Promacta Cares, all the stuff i wrote in the other thread regarding to extended access is not necessary in this case.

Kind regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #19  
Old Mon Jan 3, 2011, 08:35 PM
bebop bebop is offline
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(Why are you sure that your father is high-risk MDS patient?)

,


When he was diagnosed that is what it came back as. he is blood and plt dependent.
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  #20  
Old Tue Jan 4, 2011, 04:18 AM
akita akita is offline
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.. but i don`t know about a classification that classifies your father as high risk MDs patient "only" having 2 cytopenias and being transfusion-dependend for red blood an platelet conserves.. Has he additional complicated chromosome mutations? Or a certain blast count? Otherwise i cannot imagine that he is high risk according to his two cytopenias.

Look at the helpful IPSS Scores on

http://www.marrowforums.org/mds.html#classification

First you see in the IPSS Point Chart in how many IPSS Points the blood accounts of your father result. And then you see by the Classification Chart in which risk class by IPSS the MDS of your father belongs. Even with the two cytopenias (red blood cells, platelets= 0,5 points) and a poor cytogenetics (1,0 points) and Bone Marrow blasts of 5-10 % (0,5 Points) = 2 Points this would be only intermediate-2 and not high risk.

But i suppose the doctors of your father see his MDS as "High Risk" in the sense, that by additional indicators your father is in high danger for mortality because of his disease (low platelet counts, many transfusions, maybe plus other special health problems/diseases/comorbidities..)

This is supposedly a point being adressed in the upcoming ASH Webinar on 19. January: Prognosis only by IPSS (or WPSS) Score is not precise enough.There have been studies presented at ASH 2010 who tried to evaluate extra patient parameters/diagnostic specialities additionally to IPSS.. scoring to result in a better prognosis estimation. For example there was developped a new score with nine different points, a lot more than included in the IPSS or WPSS.. You could register for the webinar and send your special question regarding diagnosis and prognosis of your father to the speakers, Dr. David Steensma and Dr. Gail Roboz.. As i learned from the archives - i did not yet attend a webinar - there should exist the possibility to send messages to the speakers during the session, and they will answer during the session or later (if not possible during the webinar).

http://forums.marrowforums.org/showthread.php?t=1909

Might be that the risk of your father converting to AML is not so high, but there are the other problems that cause his actual probably lifethreatening condition..

Kind regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD

Last edited by akita : Tue Jan 4, 2011 at 04:40 AM.
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  #21  
Old Tue Jan 4, 2011, 10:16 PM
bebop bebop is offline
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the dr is going on the numbers and she used the ispp or whatever that is. it has to do with the siderblasts and rbc and plts also. when his plts went from 80 plus plts to 23 in 2 weeks she moved him into the high risk. also now he has congestive heart failure due to the low counts.
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  #22  
Old Mon Aug 20, 2012, 05:59 AM
hansi.s hansi.s is offline
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hi s001

Quote:
Originally Posted by S001 View Post
My dad's platelets have taken a big dip, down to 6K at one point. 2 days after being transfused with 1 pack, his platelets were at 10K. I should guess his bone marrow is not producing platelets anymore?

His bleeding has been the major cause of concern and right now he is being transfused with another pack of platelets. His WBC's have jumped to 20+ as well, which means there is disease progression. For the time being, it is important for my dad's recurrent bleedings to be controlled and for this, platelets transfusions are the only way I guess.

Is there anything else we can try to bump the platelets? I've read of Nplate and Promacta, but the views are mixed, so I don't know.

Praying for strength to deal with this. Things don't look good at the moment.



i hv been seeing u r post for few days..im so sorry for ur dad..how is ur dad now.
My sis-in-law is now diagnosed with MDS RAEB..we r praying for her..
thats y i joined this forum..hope i can get some help and support from this forum..
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  #23  
Old Mon Aug 20, 2012, 09:08 PM
werickso49 werickso49 is offline
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low platelets comment

I am wondering if your father was in Viet-Nam.Reason I ask is that I have just the opposite,extremely high (But now under control) platelets.I have a rare condition called essential Thrombocytosis.No cure but manageable.I was stationed in Viet-Nam (U.S Air Force) 1970/1971 and I'm am fighting tooth and nail about a claim I have with the VA.Seems like these conditions may be associated with exposure to Agent Orange.ANY troop spending time in 'Nam WAS exposed to AO regardless of the length of time.The VA is not co-operating and denies even the possibility of AO being linked to low or high platelets issues.I am fighting for an investigation about this.From NH, GOD bless you,your husband and family and good luck.

Wayne Erickson werickso49@hotmail.com
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  #24  
Old Tue Aug 21, 2012, 02:57 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by hansi.s View Post
i hv been seeing u r post for few days..im so sorry for ur dad..how is ur dad now.
My sis-in-law is now diagnosed with MDS RAEB..we r praying for her..
thats y i joined this forum..hope i can get some help and support from this forum..
Hello hansi.s.

What kind of treatment is your sister-in-law getting? Do you know how her blood counts are or if she's been needing frequent transfusions? Do you have specific questions?
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  #25  
Old Tue Aug 21, 2012, 07:17 AM
hansi.s hansi.s is offline
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Unhappy

Hi NEIL,
my sis in law is getting chemo now..before chemo her counts are;
haemo-7.7%
packed cell volume-21%
wbc-1600
platelet-120000

she finsd 1st session of chemo..i stil havnt got her result after this 1st chemo..once i got the result i wil update..

but she said her doctor confirmed that she has MDS RAEB..
we tried to contact her doc but he avoided to talk to us

Last edited by hansi.s : Tue Aug 21, 2012 at 07:48 AM.
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