Father has MDS and Very Low Platelets - HELP

[aggarab]

Hello All,
I am new to this forum and looking to get some information. My father, age 57 was diagnosed with MDS in August 2008. He is now being treated for MDS at Mt. Sinai in New York. The doctor told us that he has low risk MDS as per IPSS and he was put on Vidaza. He just completed his first cycle (a week of injections followed by 3 weeks). During this time, he platelets have taken a major drop. Before starting Vidaza, his platelets were low but holding their own around 15000 to 20000. Now his platelets are in the range of 3000 to 6000 which is extremely low. This has got the doctor concerned. The doctor is thinking of putting him on steroids to raise the platelets but is trying to avoid it due to his other condictions (Heart attack, Diabeties and Ulcer). He has been complaining of minor bleeding in his gums.

Is there anyone out there with some information or experience with a similar condition? What can we expect with such Please advise.

Thanks and have a happy new year

[Birgitta-A]

Hi aggarab,
Low platelets (thrombocytopenia) is a common adverse effect of Vidaza (azacitidine). It is often treated with dose reduction, delays in the next Vidaza cycle and platelet transfusions.

http://abstracts.hematologylibrary.o...urcetype=HWCIT

As you can see in the table 54 of 175 patients (31 %) had low platelets after the first cycle but only 30 of the patients after the second cycle. I don´t think steroids have much effect in MDS patients.

Then many clinics only treat patients with Vidaza during 5 days in a 28 days cycle since that dose gives better response and fewer adverse effects.

Hope your father will have a good response next cycle!
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen for low white blood cells, last platelet count 50, asymptomatic

[aggarab]

Hi Brigitta,
Thank you for your reply. I just got back from the hospital. Today his plts were 2000. His Hemoglobin and WBC are holding ok at 8.6 and 1.1 but the plts are becoming a big concern. We spoke to the doctor and he said that all we can do for now are transfusions which are three times a week for plts. Seems a little odd given there are many medicines that are out there now for plts. Doctor also said that he has a risk of blood hemorrage but this is a risk we have to take. Not sure, what should be the next course of action. Any advice?

[Birgitta-A]

Hi aggarab,
There are two new drugs for low platelets - Nplate and Revolade - but they are still only approved for patients with the bleeding disease Immune Thrombopenic Purpura.

MDS patients still have to try to take care of our platelets as well as we can. In your fathers case he will have to rely on transfusions till he hopefully will respond and the platelets will increase.

You know there are many kinds of drugs and food that affect the platelets or increase bleedings. I have copied this link several times to the members of this forum since many patients try food that is supposed to make you healthy (like omega 3 and garlic) but can be dangerous for the MDS patient with low platelets:
http://www.pdsa.org/itp-information/itp-warnings.html

Kind regards
Birgitta-A

[aggarab]

Thanks Birgitta,

We have been keeping a watch on what he eats and all medicines he takes are approved by his Hematologist. It is still very scary. His platelets are 0 now and he was bleeding a lot this morning. Hopefully he will respond soon.

[Birgitta-A]

Hi aggarab,
Here is an article about EPO treatment. As you can see the article is from 1983. Aranesp is a kind of EPO drug that lasts much longer than for example Procrit.
http://www.aamds.org/aplastic/diseas...rowth_factors/

As you can read EPO stimulates production of young red blood cells (reticulocytes) within 3 to 7 days. A definite rise in hemoglobin requires longer time (2-4 weeks).

If Neupogen or similar drugs for low white blood cells is added more patients respond.

Did you get any info about your fathers serumEPO before the first transfusion? More patients with a low serumEPO (less than 500) respond when they are treated with EPO drugs.

Do your father get platelet transfusions since his platelets are so low?
Kind regards
Birgitta-A

[aggarab]

Hi Birgitta

He has been getting two bags of platalets almost every day now. Every day we get a blood test before platalets and it has been 0 almost everytime. Not sure what else we can do now. He has been bleeding from his gums continously since Monday. It is heartbreaking to see him in this state. Not sure what else we can do. Seems lost here.

\

[Birgitta-A]

Hi aggarab,
Perhaps they could try Prednisone or a similar drug - my platelets increased to 93 000 when I tried Prednisone but the other counts didn´t increase so the Prednisone was trapped to 0. The problem with Prednisone is that the risk for infection increases.
Kind regards
Birgitta-A

[tytd]

Just don't know what to do. I've been sitting on a low platelet count for 26 years and a mild macrocytic anemia for a shorter time. For one and one-half years my platelet count has ranged from 27,000 to 21,000. Now I've reached below that threshold of 20k - 19000.(starting to get scary). It's coming down to the wire where I must make a decision. Should I take Vidaza and risk plummeting platelet count or go for risky BMT ( in my late 50s)? Should I go for a clinical trial with Promacta or Nplate?? Watch and wait has served me so well for so long, I think I'll wait a little longer. Anyone out there who has taken Vidaza with this low a platelet count that responded well??

[Birgitta-A]

Hi tytd,
You know I don't think anybody could answer your question about watch and wait, treatment with Vidaza, Promacta, Nplate or SCT.

If you try Vidaza (if your doctor will allow that with so low platelets) you should know that about 65% of the patients initially get low platelets (thrombocytopenia) :
http://www.drugs.com/sfx/vidaza-side-effects.html

If you look att the response about 20% of the patients get increased platelets after treatment with Vidaza (Azacitidine) :
http://bloodjournal.hematologylibrar...113/25/6296/T4.

Since I am very afraid of adverse reactions I still choose watch and wait and continue with supportive therapy .
Kind regards
Birgitta-A
Last platelet count 44

[tytd]

Hi Birgitta,
Thanks for your always informative responses and links. I think that you are exactly right, no one can tell me what the best course of action is here. The NCCN guidelines/recommendations for refractory thrombocytopenia in MDS(If that is what I have??) are hypomethylating agents, then possibly immunosuppressive therapy if a candidate, and then BMT if a candidate. However I think we are of like mind when it comes to worrying about adverse reactions to meds. As has been said, "better to deal with the devil you know than the devil you don't know." I hope your platelet count of 44k stays stable. That was my reading back in 2001.

[tom30]

Originally Posted by Birgitta-A

Hi aggarab,
There are two new drugs for low platelets - Nplate and Revolade - but they are still only approved for patients with the bleeding disease Immune Thrombopenic Purpura.

MDS patients still have to try to take care of our platelets as well as we can. In your fathers case he will have to rely on transfusions till he hopefully will respond and the platelets will increase.

You know there are many kinds of drugs and food that affect the platelets or increase bleedings. I have copied this link several times to the members of this forum since many patients try food that is supposed to make you healthy (like omega 3 and garlic) but can be dangerous for the MDS patient with low platelets:
http://www.pdsa.org/itp-information/itp-warnings.html

Kind regards
Birgitta-A

Hi Birgitta, I tried to access that link but it appears to be dead, I did go to the pdsa.org site and found some of the stuff interesting, macrobiotics sound interesting. I was curious if you recall what the issue is with garlic and omega 3 I couldn't find anything on them that would effect platelet production. I am one of the folks that try foods to promote health, I currently have a long list of good foods that I'm sticking with, garlic and omega 3 are on it. My platelets at last count were 78. Have you tried any foods that have worked?


found the info on the site,they must have moved it. http://www.pdsa.org/about-itp/warnings.html ... it answers my question that the foods listed do not reduce platelet production or count, which is good because i also eat blueberries, drink green tea and coffee. would still appreciate hearing if you have had or heard of any luck with any foods helping platelet production/count.

[sophia68]

my father has been in the hspt for 7 days now with very low platelets and zero white blood count...he has had 5 neupogen injections and the wbc is not moving...what does this mean

[bebop]

are they transfusing him for the plts? not sure what they do for the whites but it would seem they should at least give him plts if they are low enough.

[slip up 2]

my spouse finished his 1st round of vidaza, he started with low plts, and they went even lower, 2x plt trans , then the counts started going up and to-day they were in the normal range, he has started vidaza again to-day...so hang in there, try not to be too scared , this site has a wealth of knowledge and information, I know it has helped me a great deal, also no question is a dumb question...

[sophia68]

Originally Posted by bebop

are they transfusing him for the plts? not sure what they do for the whites but it would seem they should at least give him plts if they are low enough.

Hi bebop...yes they are transfusing him...

His counts are:

wbc - 1.0 - up from 0.9
hgb - 7.3 up from 6.4
platelets - 20 - down from 21 y'day

He will no longer be receiving any chemo treatments and will be transfused as necessary.

I'm wondering how long the transfusions will sustain him and at what point will they no longer transfuse?

[bebop]

I think the drs will go with them as long as they are working for them. Dads stopped working maybe a few weeks before they actually stopped transfusions but he had a great granddaughter on the way. Dr still continued a couple of more weeks after she was born.

[Dannyv]

hi slip up 2 and everyone out there. In feb of this year my platlets start dropping out of no where, im in the best shape of my life. i have kaiser ins. i had my cbc done and they notice my platlets where low and going down. 2 weeks later i was getting a transfusion of platlets. until this day i have gotten transfusion every week. im waiting for them to find a donor to get a BMT. meanwhile at first they thought i had ITP we did all the treatment and nothing worked. then they said i have aplastic anemia and we started immune supressent drugs. i've been on promata, cycllosporine and now taking epogen shots because they say my HGB are dropping. i've had 4 bone marrow biopsy and now their claiming my red cells look like MDS. Therefore, 9/24/12 im starting chemo therapy using vidaza. i quess we spent 6 months trying plt building drugs and IS therapy and nothing work i still get transfusions once a week to stay alive. Now they want to try chemo. my wbc usually stay around 3.5-4.6 HGB will go down to 8 then they will give me 1 unit of red blood, that will last for 2 months then im back at 8. my platlets last 7 days from the 2 units they give me. anyone out there with simlar problems. i would love to hear from you. oh im 42.

[Birgitta-A]

Hi Danny,
Your WBC are good at 3.5 - 4.6. Your HGB is OK too - one unit of blood in 2 months is not much.

The big problem - as you have understood - is the low platelet count. There are no drugs approved for low platelets for MDS patients but you have been treated for ITP and may have tried Promacta and Nplate that are approved for ITP. Did that drugs not have any effect?

Vidaza like almost all chemo often decreases all counts initially. Hopefully you will respond early (after the firsts cycles) so your platelets will increase.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Thalidomide + Prednisone 2010 when my dysfunctional platelets were 22. After 4 weeks my platelets were 43 and then they increased to max 115 - latest count 77.

[ssdavi71416]

Danny

I have aplastic anemia but had low plateletes for a long time. There is a medicine called Amicar that will help clotting when plateletes are low. My plateletes were <10 for many months. If your plateletes are below 10 you might want to talk to the Dr about this medicine. That might save you the platelete transfusions. My experience was that the plateletes only last about three to 4 days.

Scott Davidson

[Hopeful]

Danny,

I highly recommend that you see someone that specializes in Aplastic Anemia and MDS as soon as possible. Dr Ron Paquette at UCLA is excellent and is not that far from you. You will have to pay for that first consultation (~$350 I think), but after that he can guide your team at Kaiser in your proper treatment. The reason that I am urging you to do this quickly is that you didn't follow a standard IST protocol (with ATG) for Aplastic Anemia at Kaiser. Also MDS is very rare in young patients. Do you have *signficant* dysplasia or increased blasts or chromosome abnormalities to warrant this diagnosis? Some dysplasia in your RBC's can be seen with Aplastic Anemia. Dr. Paquette can help with your correct diagnosis. He has treated 100's of patients. You need someone who has treated 100's of patients when you have a rare disease. This is your life we are talking about!

If money is an issue, you can pressure Kaiser for a second opinion with an expert. However, don't waste time waiting for their approval. Do it in parallel with getting the appointment with Dr. Paquette! I would be very hesistant to start Vidaza when you haven't really gone through the "gold standard" IST protocol with ATG. (Again, this is assuming you don't have increased blasts or genetic abnormalities).

[cathybee1]

Danny, I understand your frustration. I would like to second Hopeful's recommendation about the second opinion with a specialist. You are young (compared to a lot of us here) but what you have going on is not something you want to let Kaiser dink around with. Especially when your diagnosis is not clear cut. My mother was a Kaiser patient. While she did not have a bone marrow problem, she had some "complicated" medical issues and Kaiser had her wait for months sometimes between a test and follow ups. She went to UCLA for a second opinion, it cost her in the $300 range. But after the UCLA visit, it was like the Kaiser floodgates opened. All the tests recommended by UCLA were done within a few weeks, and follow ups happened very quickly. It was clear to me that UCLA carries a lot of weight with Kaiser.

My husband has a bone marrow disease that has been difficult to diagnose. We considered City of Hope, but went to UCLA because of Dr. Paquette's reputation. My husband has seen Dr. Paquette twice, and likes him a lot. Dr. Paquette has a clinical practice as well as being a researcher, and he is very approachable. If you schedule a consult with him, he will personally look at your bone marrow biopsies, order additional tests if necessary, which you can have done at Kaiser, and provide you with a written report in a few weeks. It took us about a month from the time we first called to get worked into his schedule.