Platelets.

[mike b.]

My problem is MDS but the kind that only affects the platelets. My count was 85,000 on 07/02/08 and the Dr's at Moffitt were concerned and put me on a dose pak of prednisone which took my count up to 140,000 on 07/08/08. When they drew blood on 07/15/08 it went down to 104,000 and they remained concerned. What is the normal fluctuation ammount of platelets supposed to be per day . I have to have blood drawn weekly so they can keep an eye on my condition. Any info would be most helpful !!!

[Birgitta-A]

Hi Mike,
As far as I understand no one really knows much about platelet fluctuation. Infections and many drugs can decrease the platelets. Prednisone can increase them. Here is a link to Warnings from a support group for patients with idiopathic thrombocytopenic purpura - a bleeding disease due to low platelets:
http://www.pdsa.org/itp-information/itp-warnings.html

I should be very happy if I had 85,000 platelets (my last count was 45,000).
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal, Neupogen, asymptomatic

[mike b.]

Bridget , I know that I should be Happy with my platelets being 85,000 because last year at this time it was only 15,000. I guess since this condition is so new to me that I need some guidance on what to do. I know that all of us are scared with this condition and maybe I don't have it as bad as most of you but I sometimes need answers and reassurances.Peace

[Ruth Cuadra]

Hi, Mike.

Birgitta is right that platelet counts can fluctuate a lot. You'll want to watch the overall trend of your counts over many weeks rather than focus on the change from one blood test to the next. Everyone is different, but with platelets about 50,000 you are pretty safe.

You said that your diagnosis is MDS but that only your platelets are affected. There is another condition called ITP (idiopathic thrombocyctopenia purpura) that involves only the platelets. Is it possible that you have ITP rather than MDS? If so, your treatment options would be different. Do you know what subtype of MDS you have?

Regards,
Ruth Cuadra

[mike b.]

Ruth, All I know is that they have done 2 bone marrow procedures , one at a Dr's office associated with my primary Dr. and one with my new Dr. at the Moffit Center in Tampa. Both tests tested positive for MDS and I really don't know what my subtype is but will inquire in the a.m. when talking with my nurse and finding out the results of my blood test today.Thanks for your help !

[triumphe64]

Mike,

Since you already go to Moffitt, have you considered volunteering for this study?

http://clinicaltrials.gov/ct2/show/N...es%22&rank=563

[Jordan]

Mike,

My platlets range between 15,000-21,000. I also go to Moffitt under Dr. List. I was on the same treatment as you are one & 1/2 years ago, but it did not help. Then I went on clinical trials, but that did not help. So I am on nothing but get tested every two weeks. What are your blast % from the BMB.

[mike b.]

Jordan, Thanks for your reply, I sometimes feel very selfish that I complain about my illness and symptoms and there are so many out there that have it far worse than me. My platelets were 83,000 last week and have dropped to 61,000 this week. I'm going to Moffitt on 8/20 so I guess I'll see what's in store for me then. The Dr feels that it's critical when one hits 50,000 and then will do something about it. They treated me last time with Predisone which brought the count back up but they said I couldn't stay on it for a prolonged period of time because of the side effects. I hope this note finds you well and I hope you will continue to write. All of you give me hope every day by your questions and compassion for one another. Please keep it up !!!!

[flowerlady]

Hi Guys,

I see Dr. List at Moffitt as well and try really hard to stay calm about the platelet stuff...Mine have been as low as 29 on Revlimid and as high as 96...now they are dropping again. From what i have been told they must be much lower than mine to be of serious concern but, to those of us who are still not use to these fluctuations any drop is frightening. Seems that in the past year since I have been diagnosed, my platelets dropping have been the least of my count worries and unless they drop to the 20's I am going to try to keep "dancin"...very carefully anyway! I understand the fear...but I am confident that we are in the right house seeing the right Dr's. for our conditions!...Don't let anyone steal your sunshine...

Flowerlady

[mike b.]

Hi this is Mike again.... My platelets are continuing to drop... This week I dropped to 39,000 from 45,000 last week. I seem to be tired all the time and seem to see things out of the corners of my eyes that are not there. Is this normal or have I just lost it ? I'm scheduled to go to Moffitt on the 22nd which is Monday. Hopefully I'll learn something ! I hope all of you are doing well !

[Ruth Cuadra]

Hi, Mike.

It does sound like your platelets are trending downward. Most patients think that how they feel depends largely on their hemoglobin count, but I know that low platelets can make you feel plain lousy too. After my transplant, I started to feel better about the time my platelet count started to rise.

The problem of seeing things out of the corner of your eyes--probably called "floaters"--is significant and you should be sure that your doctor knows about it and examines your eyes.

While you're at Moffitt, I hope you can get some details about your diagnosis (like what subtype of MDS you have and what chromosome abnormalities, if any) and solid treatment plan.

Let us know how it goes.

Regards,
Ruth

[mike b.]

Hi All , Well I've been to the Dr. again at Moffitt on the 22nd and my platelets continue to drop now at 35,000 down from 39,000 on the 16th. I did ask about my subtype which is "unclassified" with no chromosone abnormalities. I'm tired all the time and have constant headaches which they have prescribed Ultram 50 mg. to ease the pain.Someone told me that the headaches are from the fluctuation of the platelets as I've had my head examined for any problems and nothing seems to be wrong in that dept.My nurse states that they 'll treat me with prednisone when my count gets to 20,000 which seems likely soon. I guess this will go on forever ? Any comments or suggestions would help ! THANKS..

[Birgitta-A]

Hi Mike,
You know that there are at least six new drugs for low platelets coming up the pipelines. The first, Nplate, was approved Aug 2008 for Immune Thrombocytopenic Purpura (ITP). Nplate is in clinical trials for MDS but seems to be dangerous for us - 22 of 44 patients with MDS got increased chromosome aberrations .

The next, Promacta, will probably be approved any day for ITP but because there has been so much problems with Aranesp and similar drugs FDA has a special program so that only patients with severe ITP can get the drug initially. Promacta is in clinical trials for low platelets in connection with treatment for different kinds of cancer and Hepatitis C. Promacta has a negative effect on leukemia cells in tubes .

Then we have AKR 501, R788, LGD-4665 and PRTX-100 – we hope that the trials for ITP will show good results. At the big haematology conference called ASH in the beginning of Dec we will probably get more info.

So perhaps you (and everybody) will get effective treatment like many of us already responde well when we get Aranesp and similar drugs for anemia and/or Neupogen and similar drugs for neutropenia.
Kind regards
Birgitta-A

[Nancy2008]

Hi Mike,

How´s it going? I was just wondering if you´ve been getting transfusions. My husband was getting a transfusion at least once a week sometimes twice as his platelettes were extremely low. He would have constant headaches after transfusions. Also, get your eyes checked as you could have some bleeding in your eyes. That also happened to my husband and it blocked some of his vision in his left eye. Keep your spirits high, talk openly and honestly with the ones you love. They´re there for you. Best of luck with your treatments.

[mike b.]

Hi All ! Well last week things went alittle badlly. I woke up on the 11th with coughing and a sharp pain on my right side which I guess now I know first hand what pregnancy is all about. I'm on 100mg of prednisone daily for my platelets and I thought maybe I was toxic , but I went to Moffitt in Tampa and was admitted with pneumonia and of all things I passed a kidney stone, what A DAY ! They placed me on antiobotics and today my platelets rose to 113,000 up from 109,000 last week.And thankfully I feel better today. But Nancy no one has mentioned a transfusion as yet, the prednisone has worked thus far. The 1st time I took it I became very energetic but this time I got the bloat, ravinous eating and infection . So what's next ? I hope all of you are well and I'll talk with you again soon. I go to Tampa on the 25th so hopefully things will have improved by then !!! Mike

[Birgitta-A]

Hi Mike,
As you have heard before the drs at Moffitt are world famous for their knowledge about low platelets. If they think Prednisone 100 mg/day during a period is better in your case than platelet transfusions they have reliable facts to support that decision. Hope your platelets will stay at the high level a long time and that you will get rid of the pneumonia soon!
Kind regards
Birgitta-A

[mike b.]

Thanks Birgitta , I'm feeling somewhat better today. The Dr's have taken 1 prednisone away today so I'm down to 80 mg. Hopefully this will work. Hope YOU have a wonderful Day !

[Birgitta-A]

Hi Mike,
Yes we all had a very nice sunny day here in Stockholm - not so common in Nov. I am still asymptomatic 2.5 years after dx with stable disease and thankful for every day .

In the new prognostic systems they look at performance status (mine is OK) and other diseases (I have none) and that makes me more hopeful. Then I continue to follow all the new drugs for thrombocytopenia - the FDA has still not approved Eltrombopag/Promacta/Revolade.
Kind regards
Birgitta-A

[Joan]

At today's lab, Don's platelets were 570,000. Eight weeks ago they were 528,000. HGB was 10.3, good for him and white count was 5.49. Doctor had no explanation for high platelet count. Only treatment he is getting is Aranesp every two weeks, 200 whatever the unit of measurement is. Doctor asked him about infections but he doesn't have any.

Anybody have any insight?

Thanks.

Joan

[Zita Desenberg]

Mike:

I live in Sarasota, Florida and I am planning to call Moffitt tomorrow. Who do you see there and who gave you the six pack of Prednisone. I had asked my oncologist to try me on Prednisone to raise my platelets before we try Vidaza. My platelets are currently 28,000. He has said it would not help. I would still like to try it as Vidaza will most likely lower my platelets further.

Thanks for your reply.