Treatment for low platelets... ?

[Julianna]

Just had a bit of a scare... my last blood count didnt show my platelets at all, but we are hoping it was just the machine that made a mistake. I don't feel like they are that low. Last week they were 29, so that's ok. Will find out from the Dr tomorrow tabout odays results.

I am not worried. Just wandering what they will do if they do drop off one day? My platelets are my only major concern in my MDS to date. What drugs can they give you? I am in Australia and I'm not sure what is available. Is a troublesome platelet count reason enough to proceed to transplant?

Lots of questions to ask my Hematologist... just thought someone else might know before I get to talk with him. Most of my issues I visit my local GP, and I know more about my disease than him! Melbourne Hospital is 2 hours away, so if something were wrong... I'm not sure what I would do. The nearest hospital I guess could help to some degree.

Thanks for any information...

xx jules

[Birgitta-A]

Hi Julie,
Low platelets is really more complicated to treat than low HGB and low WBCs. I have pancytopenia (all counts low) and can get blood transfusions for the low HGB and Neupogen for the low WBCs. The low platelets can be treated with platelet transfusions but we often develope antibodies against platelets so we have to have platelet transfusions from special donors.

There are 2 new drugs for patients with the bleeding disease Immune Thrombocytopenic Purpura. The first approved drug - Nplate - was early in trials for MDS patients and showed increased blast cells in 8 of 44 patients (most patients improved when the drug was stopped).

The second drug that I hoped should be better is Promacta. In test tubes that drug has inhibited leukemic cells. As far as I know 2 members of this forum has tried Promacta. The first patient - Kirby - has had a good response but developed AML after some months. Perhaps he should have done that without Promacta too. The other member developed leukemia within a month and that makes me afraid of Promacta - perhaps it is just as dangerous as Nplate. I have not yet seen any result from studies with Promacta on MDS patients though there are several ongoing trials.

My dysfunctional platelets were as low as 22 last spring. Then I got Thalidomide for my fibrotic bone marrow and my platelets are now between 55 and 64 - the best results i have had since 2007.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednosone for bone marrow fibrosis

[rose mcmillin]

Hi, Sorry about your platelets. I wish I had a magic answer for your platelets but we are struggling with the same thing. Just wanted you to know that I have read about zero platelets before. I know that what we read is frightening but try not to fret. My husbands are 17 his doctor doesn't seem as concerned as long as he is not bleeding. Hoping that your results are an error and that your platelets will climb back up after next blood test. Take care of yourself. There are alot of ups and downs with MDS. We have panicked about things only to see huge improvements the next week. Just wanted you to know that you are being thought about and being wished the very best. Rose

[Birgitta-A]

Hi Rose,
Thank you for whishing me the best counts! You know for the moment I am satisfied with my platelets - today 56 - due to Thalidomide and Prednisone.

It is true that platelets can function very well and you will then manage with very low counts but mine are dysfuctional and I get small bleedings around the eyes, blisters in the mouth, bruises etc when my platelets are less than 30.

Hope your husband will continue to have a good response to Vidaza!
Kind regards
Birgitta-A

[gipper]

Hi Julianna,

As Birgitta pointed out, there are two drugs in the pipeline for treating folks with low platelet counts. I have been receiving weekly doses of Nplate for 23 weeks. Here in the states the this drug has been approved for use in patients with ITP, which I was diagnosed with, along with MDS and myelofibrosis. However, my doctor has given me much lower doses than prescribed by the manufacturer. They recommend starting with a dose of 1 mcg/kg and increasing the dose by 1 each week up to a maximum dose of 10 mcg/kg. Nplate literature warns that folks with MDS may accelerate the time to AML and generally make things worse in the marrow. During my first four Dacogen cycles my count fell to 4 (4,000) and during the next four cycles it fell to 8. 22 platelet transfusions later I'm pretty much refractory to these transfusions. At the start of Nplate injections my count held in the 13 - 15 range and now I'm in the mid to upper 20's. I have never had a dose greater than 5 mcg/kg and only had that much once. My usual dose is 2. You can see the effect has not been too significant for me.

Due to myelofibrosis I have a greatly enlarged spleen (splenomegaly) and it is likely soaking up a lot of my platelet and red blood cells. Suspect I'll have a splenectomy before long.

I was given a prescription to use in case of uncontrolled bleeding. Thankfully I've never had to use it. There are other factors that influence clotting such as von Wildebrand factor.

Anyway take heart, treatment for your condition may not be too far away. Wishing you the best.

[tytd]

Hello all,
Jules, I suspect that your zero platelet count result was probably a lab error if you've not been bleeding. I hope that your repeat count is OK. If you check on www.clinicaltrials.gov and search for trials with Nplate and MDS there is one open with study locations in Australia which might be an option to consider before transplant. Hopefully the results from those trials will be back before you or I have to make that decision. Thanks for your advice about getting on with life with this disease. Trying to not let MDS define your life is good advice although that may be easier said than done at times.

Birgitta, It is good to hear that your platelet count is staying up on the Thalidomide and that you are tolerating it without significant side effects, I hope. Your research benefits us all!!

Rose, Thanks for your advice about not dwelling on the negatives for too long. As someone who has gotten down to a platelet count of 18, it is reassuring that your husband is doing well at 17 without bleeding.

Gipper, Thanks for sharing your experience with Nplate. It really helps to hear from someone who has tried it. Have you had any side effects? I was intrigued by your story of having ITP and MDS since I had low platelets for years before being labelled with possible MDS. Did you have ITP before your MDS and myelofibrosis were diagnosed or do you think you really had MDS all along? I've often wondered if ITP could transition into MDS?
Best wishes and luck to all of you. Tytd

[Julianna]

Thanks everyone for your information. My Doctor still hasn't got back to me with my results, so I am thinking no news, is good news. Thanks heaps.

But really hate this waiting.... and living my life on the edge all the time. I guess I still do worry a bit about one day bleeding to death! And wondering what that would be like. Sorry about being morbid. But I live so far from my specialist. I guess all that any of us can do is hope that the one who has led us here is going to lead us through to the end.

Thanks for listening.

[Birgitta-A]

Hi gipper,
Very interesting with a low dose Nplate keeping your platelets between 25 and 30. We are really very different. I have severe marrow fibrosis but no spleen enlargement so my platelets will last a little longer.


Hi tytd,
Since I started with Thalidomide June 2010 I have had lower WBCs than I usually have so we have tapered the dose from 50 mg/day to 50mg 4 days/week - that corresponds to 29mg/day - and I hope my bone marrow can tolerate that dose. Hope you will find something for your platelets too!
Kind regards
Birgitta-A

[mcgill54]

Hi All, we are really a little subgroup dealing with this difficult thing, and it's so helpful to share what's going on, both medically and emotionally (I guess that's the old psychiatrist in me) Jules, hang in there with your youth and down under spirit, wishing you all the best. I go for labs in 2 days after 4wks off and will let you know the latest. The Nplate dose adjustment is very interesting and that's one of the things my team is suggesting, Thanks Brigitta for the info on Dr Raza, NYP Columbia is connected to NYP Cornell where I go..Good that there's alot of research going on. McGill 54

[gipper]

Hi TYTD,

I had expected my "signature" to appear on the post, but obviously I made one or more mistakes. Hopefully my signature will appear on this post - it answers your question on timing of diagnoses. However, just in case it doesn't I was diagnoses with ITP in 2000, MDS in 2005, and myelofibrosis in 2009. In addition, my name "gipper" was previously known on this site as Bill F, which is still my moniker on the MDS forum site. I hadn't logged in, in quite a while, forgot my ID and password, got a new email address and found it easier to start over.

Anyway, after my diagnosis of ITP, no treatment was required or rendered as my platelet count was not very low. Then in early 2005 my hgb plunged and I began receiving packed red blood cell transfusions (100 so far).
I have not read of ITP transitioning to MDS, but who knows. The side effects I've noticed in getting Nplate injections, have been negligible until possibly the last couple of weeks. Have experienced significant pain in my left foot - almost started using my crutches. Instead went to urgent care had X-rays which were relatively normal. Just a little bone thinning was noticed, consistent with my age. I survived after getting a prescription for pain - took all of 6 tablets. Now the fourth most common side effect of Nplate in one of the trials was arthralgia (joint pain). Guess the only way to know if Nplate is the cause is to stop taking the drug. That probably won't happen until I have my spleen removed. I see my hematologist tomorrow and will ask about this.

Gipper

[Julianna]

Hi everyone. We are still not sure if the machine was at fault for my lack of platelet count... however the plot thickens because now my count is 144!!!!

I'm not on any treatment. I was confused as to whether I should be happy or not. The Doctor said that he felt it was suspicious, seen as my counts are not usually anywhere near that. I only sopke to him on the phone for a minute and in my shock didn't get to ask why he thought it was suspicious..??? He just said to watch out for any bleeding. Does he think that may be the cause for the increase in platelets? I am sure I would know if I was bleeding.

Maybe it is just a miracle...

I have been unwell with a bad cold recently, maybe that might have had some impact. Really hard on this constant rollercoaster!!!

Take care all,
Jules

[Julianna]

Ok it may just be nothing, but it doesnt feel right. I didn't realise that I hurt myself just now, and I saw a heap of blood coming from somewhere. It was my finger, and I know fingers bleed a lot, but not from a small cut like this... and not stopping. Am I getting paranoid?????

My gums have been bleeding a bit during brushing my teeth. But I guess I am used to that and try and be gentle... but my finger has already bled through one bandaid already. Now I am stting here with 2 tight bandaids on to stop it from continuing to bleed.

My Dr said that he was suspicious of my jump in platelet count... why was that? Does anyone know what he might have been thinking?

Are my platelets just not working well... even though there may be some there? Any ideas? I might have to get ANOTHER count done. I'm afraid I am going to bleed out somewhere else that isnt so benign.

[mcgill54]

Hi Julie..no you are not paranoid, first keep the direct pressure on the cut, and try to elevate it. You should let your dr know and see if you do need another count done, or some other tests. It is scary to see lots of blood, but it often looks worse than it is. You want to be sure there's nothing else going on that you can't see, so contacting the dr is the way to go. All the best McGill54

[Birgitta-A]

Hi Julie,
As McGill already told you you should press on the cut, keep you hand elevated and put a very cold compress (with ice) over the cut.

When the nurses are taking blood from my veins I always stay 30 min in the waiting room watching TV with pressure on the compress over the vein holding the arm straight and high. I never have bruises though they do blood work once a week. I don't care about what other patients think - often they actually ask and when I tell them most women are very interested.

Your platelets are probably low - a cold often decreases platelets. It is true that platelets fluctuate and that the can be dysfunctional (not work well). I think another count is a very good idea.
Kind regards
Birgitta-A

[Dad'sMyHero]

Hi Birgitta

Thanks for your post. You give a lot of good information on here and many people are really grateful for it.

I posted a thread about my Dad. It is the only thread I have posted thus far. Please check it out if you have time.

When my Dad was in the hospital, he had a platelet transfusion and they said he was refractory to platelets. Does this mean they stopped working? He also had bleeding and infections. His hemo got to 6.7, his white cell count was really bad and his platelets went from 19 to 16 after the tranfusion. I guess his body just couldn't stop the bleeding/infection.

Thanks for your help. I wish you all the best. How are you feeling?

Thanks
Joe

[Birgitta-A]

Hi Joe,
Thank you for the kind words! I feel fine thank you - I am still responding after 21 months with Thalidomide + Prenisone.

I can see that Neil has answered your question about platelets.

Infections often decrease all counts and if they manage to treat your Dad's infections his counts will probably increase. Is he getting Neupogen or a similar drug for his low white blood cells?

Remember that many drugs for example all painkillers can decrease platelets.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, supportive therapy with transfusions, Neupogen injections and Desferal + Exjade for iron overload until 2010. Since then Thalidomide + Prednisone with good effect.

[Dad'sMyHero]

Thanks Birgitta

I am mainly getting information about the disease going forward so I can gain a greater knowledge base to help others and with MDS causes, etc.

Unfortunately my Dad passed away just over a month ago. I detail this is a thread I have started, My Dad is My Hero.

He was on Revlimid for about a year until it stopped working. He had previously tried Vidaza which never worked. Before the Revlimid he was transfusion dependent, but was fortunately transfusion independent for about a year with the Revlimid. I don't think he was ever on any drugs for his white count, which doesn't suprise me, mainly b/c he had so many other comorbidities. He had had 2 previous quadruple bypasses, diabetes, and many health problems.

He went into the hospital in the middle of December with which was eventually diagnosed as some type of pleurisy/pneumonia/lung infection. He had a lot of trouble gettting breaths and an extreme amount of weezing trying to get his next breath. I think now this could have possibly been Interstatial Pneumontitis, which I read could be possible with Revlimid and/or MDS. He survived this stint in the hospital (12 days), but it severely weakened him. He was able to go home but had lost a lot of weight and his reserves were really depleated.

He still had a sinus infection while he was at home and never could kick it. Halfway through January he started having severe headaches and had to be rushed to the emergency room. A CT scan was done and he was found to have subdural hematomas. His platelets were currently at 19. A platelet transfusion was done, but the platelets went down to 16.

Unfortunately the majority of the time after Dad was admitted he was nonresponsive/comatose. He obviously did not respond to the platelet transfusion. A lot of his other numbers were not looking good as well. With his platelets so low, he was a very poor candidate for surgical intevention to stop his brain bleeding. We knew Dad was honestly tired of fighting the disease and knew he was ready. We are just glad he was able to live as long as he did.

I wish you the best with everything Birgitta. Keep 'fighting the good fight'. Our Dad did and it looks as if you are doing the same!

Joe

[Birgitta-A]

Dear Joe,
How sad that your Dad passed away. You wrote that he was tired of fighting the disease and ready to go - I know that I will come to that point too.

Good that you will learn about MDS to help others with MDS!
Warm regards
Birgitta-A