cmml treatment low platelets

[mcgill54]

i have mds/cmml with mild anemia, asymptomatic, nl wbc and low platelets in the 43000-51000 range. I am 86 yrs old excellent general heath despite bypass 3,5 yrs ago, followed by a drug eluting stent related to surgical scar tissue. When platelets dropped below 50, the plavix was d/cd and aspirin reduced to 81mg which will have to stop if platelets go below 40. How long can platelets remain fairly stable? They were first noted to be low, 120000 last sept and on f/u in Feb were 72.For several yrs I've had elevated monocytes and low normal Hgb, etc. Do platelets ever spontaneously go up?

[Ruth Cuadra]

Hi, mcgill54.

Welcome to Marrowforums. You seem to be keeping track of your blood counts, which is important because the trends can be more revealing than any one set of test results. If you are a little dehydrated on a test day, your counts may register higher because there are the same number of cells in less fluid. Generally, platelet counts can be among the most variable but it seems that yours are indeed trending down.

I am wondering how your doctor arrived at a diagnosis of MDS/CMML. Have you had a bone marrow biopsy? The defining features of CMML are an increased numbers of monocytes in bone marrow and dysplasia (abnormal shapes) of at least one cell type. Has your doctor recommended any treatments?

Regards,
Ruth

[mcgill54]

Hi Ruth, thanks for the reply. I did have a bone marrow bx and aspiration that confirmed the dx. My Dr is at a center of excellence in NYC, and specializes in the older population. It has been almost 3 months of monitoring, with no tx recommended now. At some point she said she would recommend decitabine, which is supposed to be more effective for CMML-intermediate risk. Although I am a physician, a retired psychiatrist like Brigitta, this is all new and quite hard to get a handle on. I still feel fine and continue an active daily life swimming, gym and balance classes.I also work with a trainer who has a fall prevention program which is excellent. I am very concerned about taking this treatment and at the moment am not convinced the risk is worth it. I have been blesssed until now with good health and do not want to have my life end in an ICU. So glad for the Forum, all the best. McGill54(my med school class!!)

[tytd]

Hello Mcgill54,
We (MDS patients) are a heterogeneous bunch and everyone's disease may progress at a different pace - I've had low platelets for going on 27 years but only started worrying about it over the past 2 years since they dropped so slowly - now in 18 to 20k range. I share your concern about Dacogen especially since I'm not a clear-cut MDS patient. Of course, I avoid aspirin or similar drugs at all costs but you need it for your heart. My hematologist likes to comfort me by telling me about his 89 year old patient who has done well with a platelet count of 15k for a year -not sure I believe him. Don't do any weightlifting and protect your head. Take care of your heart. I think the exercise is good. I hope your platelet count will stay stable or go up - it's possible. Good luck. tytd

[mcgill54]

Hi tytd, thanks for the reply and encouragement. I love the idea of the 89 yr old with low platelets..my new role model! I think the hardest part of all of this is the complete unpredictability, and there are so many questions with no answers. How often is the usual lab work done. So far i've been having 2 wk f/u, but last time the dr said 3 wks. I hope it can be less frequent since I feel fine and have good energy. All the best, McGill 54

[Julianna]

Hang in there mcgill! I've also got low platelets and that is my main struggle at the moment with MDS. My platelets go up and down all the time, and so does a healthy persons platelet count. Mine are on average between 20-30 but seem to be staying there. I get a lot of bruising because I'm a cluts! Always hurting myself... crumbs. I tell ya, my vacuum cleaner is my worst enemy! I just hurry around way too fast thats all.

This is a long road for the most of us. So make yourself comfy!

Take care,
Jules

[Birgitta-A]

Hi mcgill54,
Since we had our latest contact I have started taking Thalidomide 50 mg/day and Prednisone 20 mg/day for my very severe fibrosis.

After 4 years of supportive therapy (my own choise) I needed blood transfusions once a week and my dysfunctional platelets could drop to 22 so I needed platelet transfusions too. Then I accepted Thalidomide and that drug has had good effect on the RBCs - I only need transfusions every third week - and on the platelets - last count 54 . Unfortunately my WBCs dropped so I have increased the Neupogen injections from 2 to 3 injections/week. No other adverse effects of Thalidomide so far.

I control my blood tests once a week because we need to know how the WBCs are doing - if they get too low I will have to reduce the Thalidomide dose. After dx my blood was tested about every 4:th week.
Kind regards
Birgitta-A

[mcgill54]

Hi Brigitta, glad to hear you're doing well with the new meds..hope you continue to need fewer transfusions. It's also seems to help the platelets..did you need platelet transfusions recently. I still am in the high 40's, with stable rbc'c and wbc's, and of course always have increased monos. Next f/u is on the 29th. The more I research this the more reluctant I am to try the decitabine, and so far there is really nothing else for the platelets with my dx. Always good to hearf from you. best wishes, Mc Gill 54

[Birgitta-A]

Hi Mc Gill,
You know Vidaza is supposed to be the best drug for MDS with a little more than 50% of the patients responding. Dacogen failed approvement in Europe last year due to not having showed results positive enough for approval. Of cause we are all different and many patients who not responded to Vidaza do respond to Dacogen.

I got the latest platelet transfusion July 2 when my platelet count was 27. Yesterday the count was 64 - I have not had such a high count since 2007! The same day I got the latest blood transfusion and yesterday my HGB was 96 so the transfusion interval will be at least 4 weeks compared to 1 week before Thalidomide.
Kind regards
Birgitta-A

[helen c.]

my husband has progressed aml with 22% blasts and 49 % in blood the dr. has told us to put affairs in order which we are doing but have not given up hope yet he has started dacogon he is receiving his 2nd. round this week no improvement yet the pain in bones and joints are bad. his white count yesterday was 19, he is so tired was on vidaza for almost 2 years and is transfusion dependant getting plattlets twice a week blood once a week went on erlatanib clinical trial in may but was stopped after blasts increased and now dacogon pray for us

[Birgitta-A]

Hi helen,
Too bad with the increasing blasts! We do hope Dacogen will have a positive effect!

You know it usually takes up to 6 months before Dacogen (like Vidaza) shows results. Perhaps your doctor will change to more aggressive treatment for AML like Daunorubicin in combination with Ara-C if your husband can manage the adverse effects of aggressive chemo.
http://www.tirgan.com/amltx.htm
Kind regards
Birgitta-A

[Debbie W]

That is great news.

"I got the latest platelet transfusion July 2 when my platelet count was 27. Yesterday the count was 64 - I have not had such a high count since 2007!"

And I never did read that Dacogen was not approved in Europe, so thanks for that as well.

[Debbie W]

Hoping that this works for your husband, sending good thoughts and strength to you and your husband.

Kind regards,

Debbie

Originally Posted by helen c.

my husband has progressed aml with 22% blasts and 49 % in blood the dr. has told us to put affairs in order which we are doing but have not given up hope yet he has started dacogon he is receiving his 2nd. round this week no improvement yet the pain in bones and joints are bad. his white count yesterday was 19, he is so tired was on vidaza for almost 2 years and is transfusion dependant getting plattlets twice a week blood once a week went on erlatanib clinical trial in may but was stopped after blasts increased and now dacogon pray for us

[mcgill54]

My dr is recommending I try this drug to increase platelets, which are now 43and have been in the 40's for several weeks. The goal for me is to be able to stay on Aspirin(low dose ,81.5mg) because of vein grafts from my bypass 4 yrs ago.If the platelets go below 40 I must stop the aspirin, and the platelets will most likelly keep going down. The other counts are stable, I continue to feel fine. I am aware of the limited testing for mds with this drug and it's use is off label with the concern of increased blasts and transformation to AML, so it really is as usual a risk/benefit choice.Any ideas or similar situations? Thanks all. McGill54 (dx mds/cmml int)

[tytd]

Hello McGill54,
I appreciate your dilemma with the low platelets and yours would appear to be a unique situation with your heart disease. Some patients may bleed at higher platelet counts than others depending on the function of the platelets which the aspirin affects in your case. Have you had any bleeding symptoms as that would make a difference in your decision? You have to weigh the risk of bleeding with any level of platelet count vs the risks of trying a drug whose full benefit/risk profile in MDS or CMML has not been fully tested. As you know the Nplate has only been FDA approved for ITP but is undergoing clinical trials in MDS patients. From what I have heard experts say, it has been shown to improve the platelet count in approximately 50% of patients but has increased the blast count to AML ranges in some patients which resolves when the drug is stopped. There is also the question of increased reticulin deposits in the BM and some other concerns. I have elected to "sit tight" with my low platelet count but would certainly consider getting into a clinical trial with Nplate or Promacta if lower counts or bleeding occur. I would be interested in knowing if your MD is able to get the drug for you off-label as I had heard it was only available through trials or if you had ITP. I assume that you have not been given any other drugs lately that would affect your platelet count. How long ago was your stent placed? Good luck tytd

[mcgill54]

Hi Tytd, thanks for the input. Since the last platelets were 37K, the aspirin had to be stopped.I had the stent 3.5 yrs ago after a bypass which came out of nowhere, no heart attack or damage, doing great except for the platelets. The dr arranges the nplate through a program of Amgen, probably off label, although they are also doing combination studies.Because of my age 86+ my options are limited, and the only thing still under discussion is the NPlate, with all it problems. I fear that the platelets will just continue to drop. At NYP they give transfusions at 20K even if there is no bleeding. This seems like a very short term solution as they only last a day or two. Also asked about prednisone, but it doesn't work with cmml. Trying hard to stay in the moment. How are you managing? Are platelets your only issue.? Best regards, Mcgill54

[tytd]

Hi Mcgill54,
Thanks for asking how I am managing. I have been doing OK with platelet counts ranging from 18 to 20k over the past 8 months. I've talked my MD into only getting them checked every 3 months as long as I call him if I have any signs of bleeding which I have not. I feel OK doing this since the pace of my drop has been very slow. I have the usual easy bruising and petechiae and watch for any mucosal bleeding in nose or mouth. I have a mild to moderate anemia with Hb of about 9.7 which I tolerate OK.
I'm sorry to hear that your count has dropped to 37k, but you never know, it might plateau. Generally if it's above 20k one should be OK but of course that depends on the individual patient. I, of course, in my case, do not agree with the threshold of transfusing everybody with a platelet count below 20k. That would seem to be reasonable if it is dropping fast or if you have any bleeding, fever, infection, or coagulation problems, etc. I think you just have to "play it by ear" and assess the whole patient not just the "number". Did you have any chromosomal abnormalities on your BMB? I had read where Gleevac had been used in some patients with CMML with a particular translocation but that's probably mainly in patient's with an elevated WBC. I'm sure your MD is familiar with that. Have you had B12 level checked? Hope you will continue to do well. Tytd

[tytd]

Birgitta,
I am glad to hear that you have had a good response to Thalidomide and Prednisone. I was curious as to why you had decided on Thalidomide instead of Revlimid. Also why the Prednisone? Do you have an immune component to your low platelet count? Thanks for continued informative contributions.

Helen,
I hope that your husband is doing better on the Dacogen. Tytd

[Birgitta-A]

Hi tytd,
Thank you for asking about my medication. You know my dx was myelofibrosis during more than one year because I have very severe bone marrow fibrosis. Thalidomide 50 mg/day in combination with Prednisone (tapered during 3 months) has showed good results in some patients with fibrotic bone marrow.

In Sweden only patients with Myeloma that has not responded to first line drugs can get Revlimid (Thalidomide costs about 13§/caps and Revlimid about 200§/tabl - I think that is the reason).

Hope you are doing OK!
Kind regards
Birgitta-A

[mcgill54]

over the past few months platelets have steadily decreased, and now are at 19. My dr is strongly recommending NPlate which will start next week.All other lines are stable and I have no chromosonal abnormalities. Am now 87 (and 3 mos) and this seems like the best alternative as I can't worry about long term effects and platelet transfusions have many known problems. It 's been exactly a year since this began and I have been feeling good, hope the nplate helps but I am a bit anxious. Any comments?

[tytd]

Hello Mcgill54, I'm glad that you have been doing well over the past year except for your declining platelets. We patients with mainly low platelets don't have many options available. I guess it's difficult to decide when to start Nplate if you are not bleeding or requiring transfusions. I've heard that patients with excess blasts should avoid Nplate but I assume you don't have that. I have felt that Nplate would be a safer option for me (rather than Vidaza) but my physicians seem reticent to use Nplate off-label. I would be interested in your response to the drug if you don't mind posting your results if you are able to get the Nplate. Thanks and the best of luck to you. tytd

[Birgitta-A]

Hi Mcgill,
I suppose you have already read all reports about Nplate in MDS patients but I will send one just for info to other members. http://ash.confex.com/ash/2010/webpr...aper33611.html

As you can see 34 pts (85%) had a platelet response. Peripheral blasts were increased in 2 pts of 40 and three cases of progression to AML were reported (eventually corresponding to the expected number during the study period).

When your platelets are 19 Nplate is really worth trying. Good luck!
Kind regards
Birgitta-A

[mcgill54]

Hi Tytd and Birgitta, thanks for your support..hope you both are doing well. I am scheduled to start the NPlate next week ,probably at a lower dose than the study.The Dr feels it is a better alternative than transfusions for now and so do I. ,although it now feels like a new stage since before it was just monitoring. She has several patients who are doing well on this, so hopefully I will be another. The good news is I feel well and still go to swim and excercise,being very careful. All the best, Mcgill54

[mcgill54]

Hi All, last week I got my first Nplate injection of 500mcg, followed by another yesterday, same dose. No side effects noted , but platelets had increased from 26K to 33 from the first dose. Somehow they went from 19 before we started to 26, but the dr felt it was time to start! They do labs before so next week hopefully we'll see another increase. The plan is to increase the dose to 1000mcg. There is so much information online that it is hard to not try and micromanage all of this, especially being a retired MDwith an RN wife..but we must after all our research and discussion finally rely on the judgement of the Dr, who is part of a center of excellence team here in NYC. Still am feeling good, keeping active and being very careful not to fall, especially with all the snow we've had. Hope you're all doing well.
Best Regards, McGill54

[Birgitta-A]

Hi Mcgill,
Hope you will continue to respond and that you won't have any adverse effects when you are treated with Nplate !
Kind regards
Birgitta-A
After 8 months with Thalidomide I have not needed transfusions the last 6 months and my platelets are still increasing very slowly. Last count 109 compared to 22 when I started medication.