Cyclosporine and rapidly worsening thrombocytopenia?

[chrplunk]

Hi. This is my first post ever to this forum though I've been reading all of your posts for months now. Back in Feb 2012 my mom (71 yrs) was diagnosed with MDS, sub-type RCMD and Trisomy 8. She has no co-morbidities and is in amazing shape with ZERO symptoms. She only found out via blood tests.

I am in IT pro and until Feb knew nothing about this though I feel like I should get a PhD for the amount of research and reading I have done I'm joking of course but I have a question for the community.

We went immediately from Kentucky to M.D. Anderson in Houston. Because of her subtype and abnormal T-cell population as well as her IPSS score of 1 (intermediate low), the team there felt there could be an immune component to this and have seen amazing results from either low-dose Campath or Cyclosporine... after some pre-requisite tooth extractions she has just started on the Cyclosporine approx three weeks ago.

Now it should be noted here two things: 1. She is hypercelluar and from what I have seen most on CsA are HYPO and 2. Her cytopenias are WBC and Platelets where her red blood cells seem mainly unaffected.

PROBLEM: Her platelet count had been hovering around 35 to 41 pre-CsA.... the very first week they dropped from 39 to 29. One week later they are at 19. The hemoc in Louisville and the Dr. in Houston both are telling her to stay the course, that this is indeed expected. Online I see cytopenia's are experienced in only 2.4% of the users of this drug... granted this drug is not typically a cancer drug.

QUESTION: Has anyone else seen this marked decrease in platelet from CsA?. With the platelets already so low, it's becoming a game of chicken... if this doesn't work we move on to hypomethelating drugs etc.... anyway, any and all comments etc would be so much appreciated! Thank you.
Chris Plunkett

[Hopeful]

Hi chrplunk,

How long ago were the tooth extractions? Did she have excessive bleeding from the procedure? Did she have a recent cold/infection? All these can contribute to a drop in platelets, which may be just coincidental with starting CsA.

The benefits of cyclosporine are usually seen 2-3 months after initiating therapy.

I've never heard of a marked decrease in platelets from starting CsA alone.

It seems like a very reasonable approach to try CsA before moving on to the hypomethelating drugs, given her presentation. With immune therapy, there is the hope of a longer remission than can be achieved with the other drugs.

Hopefully, you'll see a reversal in the trend at her next CBC.

As a side note, my BMBs sometimes were hypocellular and sometimes were hypercellular.

[chrplunk]

Thanks "Hopeful" for your reply. I'll keep you updated next Wed when she goes back.

[Birgitta-A]

Hi Chris,
Hope Greg will see your posts and answer your questions - he has read everything about immune therapy in MDS patients and tried it himself.

The National Comprehensive Cancer Network, an alliance of major U.S. cancer centers, has developed one set of criteria. They include:
IPSS score no greater than 1,
age no greater than 60 years,
low blood cell counts,
paroxysmal nocturnal hemoglobinuria, and
the presence of the HLA-DR15 gene.

I understand that you are worried about the low platelets - you know the hypomethylating drugs often decrease the platelets too.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, tx dependent from dx, supportive therapy until June 2010, since then good response to Thalidomide + Prednisone.

[tytd]

Hi Chris, I can't really answer the question about cyclosporine and decreased platelets but many of these therapies tend to make the counts worse intially before they start climbing. Simplistically thinking, I guess this happens because the initial bad MDS clone cells that are manufacturing the dysplastic cells are knocked out first before the good normal stem cells can take over again. Since I am a "watch and wait" type of person, I wondered why the docs wanted to initiate therapy without first watching the trend in your mother's counts for a few more months. Did she have a critically low neutropenia or was she having frequent infections or bleeding?? I am just curious since she is in the low risk category ( but maybe she had a high MD Anderson score). I hope the platelets will start moving up soon. Good Luck tytd

[chrplunk]

Brilliant theory which I had not considered. I pray you are correct. Thanks for your replies everyone.

[chrplunk]

Originally Posted by tytd

Hi Chris, I can't really answer the question about cyclosporine and decreased platelets but many of these therapies tend to make the counts worse intially before they start climbing. Simplistically thinking, I guess this happens because the initial bad MDS clone cells that are manufacturing the dysplastic cells are knocked out first before the good normal stem cells can take over again. Since I am a "watch and wait" type of person, I wondered why the docs wanted to initiate therapy without first watching the trend in your mother's counts for a few more months. Did she have a critically low neutropenia or was she having frequent infections or bleeding?? I am just curious since she is in the low risk category ( but maybe she had a high MD Anderson score). I hope the platelets will start moving up soon. Good Luck tytd

MD Anderson feels that thrombocytopenia is a bad indicator that is not reflected on the IPSS scoring system. They have their own scoring called MDACC (See this link then choose 'Full Text Choices' to view the whole thing)... The team there felt that because of her extreme vibrancy and zero comorbidities coupled with an abnormal T-Cell something (I honestly don't know), she would be an excellent candidate for this. She has had no infections or bleeding. The only way we knew about this was routine blood tests shows very low platelet and WBC. She was a professional dancer and still works full-time with no symptoms at all.

[Birgitta-A]

Hi Chris,
Here is a link to info about T-cells from Greg's blogg:
http://www.greghankins.com/gregsmds/..._Turn_Bad.html
Kind regards
Birgitta-A

[chrplunk]

Great link. Thank you for taking the time!

[chrplunk]

THANK YOU so much for responding. Good news, her counts did go up this week. Plt went up to 24. While that's not astounding, they had been dropping 10 per week so an increase of 5 is great news. Also her WBC count hasn't been this high in two years. Thank you, and everyone, for your prayers. We're all in this together and this forum has been a real source of both knowledge and comfort for our family.

[Birgitta-A]

Hi Chris,
Congratulations to your mother (and you) !
Kind regards
Birgitta-A

[milliken2]

Chris;
Great news about your Mom. I hope things continue to go in the right direction. Of course, it goes without saying - that it is best to keep her away from any infectious situation. And the Dr.'s office is one of the worst. Being a nurse - I know they pull the paper on the exam room table - but not all nurses sanitize the room - so you have no idea of what germs are left there to infect you while you wait. Make sure she wears one of the paper masks when she goes into any situation like that. Me - I carry a small bottle of Lysol spray - and I have Earl stand outside the room while I spray it - you know the old saying - "An ounce of precaution is worth a pound of cure". And anyone of you on the forum is already compromised. And DON'T read the magazines in the waiting area - you have no idea of what germs may be hiding there - and those are not sanitized for sure. Take your own book or magazine with you - for your own protection. Good luck to you both.

[Neil Cuadra]

Originally Posted by milliken2

I carry a small bottle of Lysol spray - and I have Earl stand outside the room while I spray it - you know the old saying - "An ounce of precaution is worth a pound of cure". And anyone of you on the forum is already compromised. And DON'T read the magazines in the waiting area - you have no idea of what germs may be hiding there - and those are not sanitized for sure. Take your own book or magazine with you - for your own protection.

Here's another tip: If the doctor doesn't wash his or her hands upon entering the room, speak up. You can be friendly about it, saying something like "Don't forget to wash your hands. Since I've had low counts I'm extra vigilant about that."

After reading that many doctors forget to wash their hands between patient appointments, I've been a lot more careful about this.

[Marlene]

It is shocking how lax the medical profession can be when it comes to infection control. When John's hickman site was bleeding he had to go to the ER. The doctor didn't even put on a mask before she ripped off the bandage to exam it. We had to make everyone put on a mask.

Then, when he had to have it removed, he had to tell the nurse who was prepping him, to put on a mask. He rolled his eyes and put one on. We also requested them not use gauze bandage the wound. They ignored that request and the gauze got embedded in the dried blood. It took me 45 minutes to get that gauze off the wound in order to change the bandage.

We did tell his hemo and he did follow-up with hospital.

You really have to educate your healthcare team sometimes.

[chrplunk]

Originally Posted by milliken2

Chris;
Great news about your Mom. I hope things continue to go in the right direction. Of course, it goes without saying - that it is best to keep her away from any infectious situation. And the Dr.'s office is one of the worst. Being a nurse - I know they pull the paper on the exam room table - but not all nurses sanitize the room - so you have no idea of what germs are left there to infect you while you wait. Make sure she wears one of the paper masks when she goes into any situation like that. Me - I carry a small bottle of Lysol spray - and I have Earl stand outside the room while I spray it - you know the old saying - "An ounce of precaution is worth a pound of cure". And anyone of you on the forum is already compromised. And DON'T read the magazines in the waiting area - you have no idea of what germs may be hiding there - and those are not sanitized for sure. Take your own book or magazine with you - for your own protection. Good luck to you both.

Thank you all for your reminders and concerns!!

[Chirley]

Hi, I have a horror story too. When I was in hospital earlier this year and had critical neutropenia at the time they put me in a 4 bed ward with one lady who was on antibiotics for an unknown infection that wasn't responding to treatment.

When I asked to be moved I was told that that hospital didn't isolate people with neutropenia. Then just to top it off, the nurses started disconnecting the lines from my port for my shower. I told them that this practice worried me and I would prefer if they didn't keep disconnecting and reconnecting. I also objected to them reconnecting the same lines that had been sitting there with nothing on the end to retain the sterility. I was told I was being obsessive and histrionic! I had not been rude or aggressive and I became REALLY annoyed when I was accused of this.

I asked to speak to the Director of Nursing of the hospital and when he came I told him about the unsafe nursing practice in his hospital. He vehemently denied any problems and walked out on me. I had worked as an Infection Management nurse for 25 years and I think I know unsafe practice when I see it.

I refuse ever to be admitted to that hospital again. I know some nurses and doctors are better at adhering to guidelines than others but when bad practice is condoned by management, it's time to get out of Dodge.

Regards

Chirley