Need advice on fast dropping platelets

[Harry S]

My dad, who is in his 70's, has myelodysplasia. He's only been diagnosed since October 2013. Due to his age and being the youngest sibling,he's not a candidate for a bone marrow transplant or stem cell therapy.

-- On 11/5, his platelet count was 37,000; On 12/3, it was 26,000, and last week, 12/13, his platelet count was 14,000. His white blood count is OK.

-- He is currently taking Vidaza (not working for him) and is being considered for a switch to Dacogen by his doctor.

-- He is based in South Texas and was planning to go to MD Anderson in Houston for longer-term treatment, but it turns out it will take a longer time than expected to see a doctor there.

-- His current doctor has proposed not switching him to Dacogen yet as it might make it harder for him to be treated with something different at MD Anderson.

-- However, his platelets are dropping so fast, we're worried about waiting and think perhaps he should go ahead and try Dacogen.

Thoughts? Suggestions? Any advice would be much appreciated. Thanks!

[Whizbang]

Papaya leaves and /or Vitamin D3, are some allternative treatments for low platelets:

http://forums.marrowforums.org/showthread.php?t=2352

How long was your father on Vidaza?

[Harry S]

Thanks for the rapid reply.

He has been on Vidaza for just over a month (and remains on it). He was getting blood transfusions weekly, and just now moved to a couple of days since the last one.

[katgio50]

Hopefully you could get in MD Anderson sooner. Would your local oncologist try to fast track him? When my husband (age 72 at the time) was diagnosed with MDS, I called both MD Anderson and Moffitt in Tampa to schedule an appointment with a MDS specialist. I would have been able to get into MD Anderson within 2 weeks, but opted for Moffitt due to the proximity to where we live. By the way, I certainly do not know the details concerning your father, but age alone does not determine whether you are a candidate for a stem cell transplant. My husband is on Day 36 from his transplant and he is age 74. Please try to see a specialist!

[Harry S]

Thanks for the input. He is seeing a specialist, but I also think it would be good to get a second opinion from the other specialist where he lives.

For MD Anderson, it seems to be harder than we initially thought. First, he had to switch his insurance as they did not take what he previously had. Second, according to my sister who has contacted them, they seem to want a great deal of paperwork before scheduling him for a consult and it will take about a month for that to happen (I am not sure why this is the case, presumably, how fast the records can be transmitted from his various doctors). Third, the holiday plus the major medical meeting on the topic means we have just hit the bad time of year for getting an appointment.

Glad to hear that you were able to get in within a few weeks. His doctor seems fine with the decision, but certainly did not offer to make a call (from what I understand) to speed entrance. What do you think the difference is between going to a local specialist vs. a major center? Is it primarily the opportunity for clinical trials or something else? Was it worth the effort?

On the stem cell, my understanding is that another complication beside age is that he has a unique chromosome abnormality that is posing a challenge.

[Whizbang]

Harry,

Vidaza / Dacogen do NOT usually show great results after the first treatment...

I did my first treatment (8/05), and all my counts dropped, I waited 4 weeks in between, then a few weeks after my second treatment (9/09) everything came in gang busters... You really have to give the vidaza time to work, as many have had the same experience...

my numbers before and during chemo...

Component  Standard Range  7/18  7/30# 8/15  8/22  8/29  9/09# 9/16  9/20  10/7
RDW-CV     11.6-14.4 %     16.1  15.1  13.8  18.5  17.0  14.3
RDW-SD     35.1-43.9 fl    51.5  48.1  40.9  55.9  53.5  45.0
HGB        13.7-17.5 g/dl  11.0  11.0   9.9  10.6  11.9  13.9  14.4  13.9  15.4
HCT        40-51 %         31.7  32.4  27.8  30.3  35.4  41.1  43.5  40.6  45.7
PLT        150-400 K/ul      95    91    51    60   209   333   249   176   209
RBC        4.63-6.08 M/uL  3.56  3.64  3.29  3.45  4.07  4.76  5.01  4.74  5.43
WBC        4.2-9.1 k/ul     3.2   3.5   2.6   1.7   1.8   2.2   4.0   4.1   3.5
NEUT%      34-68 %           53    62    52    31    32    46
NEUT       1.8-9.0 K/uL     1.7   2.2   1.4   0.5   0.6   1.0   2.7   3.0   2.1
LACT-DEH   313-618 U/L      670   598   ---   688   ---   517   ---   ---   557*
BILIRUBIN  0.2-1.3 mg/dL    1.5   1.1   ---   1.8   ---   1.0   ---   1.0   ---
# started Dacogen chemo
*estimate based on different testing ranges

[Harry S]

Thanks! Good to know...perhaps patience is key. The challenge is how low can you go on platelets before you are too low...at least yours were reasonable levels.

[Birgitta-A]

Hi Harry,
You know it can take 6 months or more for Vidaza to work - it is not common that the patient is responding after only one cycle. This means that you (or your doctor) don't know if the drug is working for your father yet.

No doctor who knows anything about MDS treatment would think of switching your father to Dacogen yet. Vidaza is a better drug for more MDS patients than Dacogen.

Good that the WBC are OK !

Your father perhaps needs platelet transfusions - it is very important with all kinds of supportive therapy when he is receiving Vidaza.

Even if he is the youngest one his siblings can be donors. To donor stem cells is like giving blood. Then his children like you could be donors and could be tested. Many patiens have unrelated donors from a register with donors from the whole world.

What kind of MDS has your father and what kind of chromosome aberration?
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006, chromosome aberration del12p + -X, supportive therapy until 2010. Positive results with Thalidomide + Prednisone 2010-2013. Now trying Revlimid.

[Harry S]

Thanks -- sounds as if the second opinion is warranted. We're trying to get him to do that.

On the type of MDS and chromosome aberration, I have asked the family members who have attended the appointments with him and taken the detailed notes, and they don't know.

We'll put that on the list of questions to ask the doctor at their next visit on Wednesday.

[Birgitta-A]

Good Harry!
Don't forget to keep your own record and write down your father's counts (HGB, WBC and platelets) every time they are controlled.
Kind regards
Birgitta-A

[Harry S]

Thanks -- my other family members who attend do write them down and I'm now glad we have them. Since I don't live locally, it helps me to better understand what is going on.

My sister did ask for the full records from the nurse last week and they seemed a bit reluctant to provide them and she was directed to a central records office, so another problem to work on next week.

We like the chart put together by WhizBang and we'll try to gather enough information to recreate it. Right now, we just have the basic info.

We're all willing to be donors, but the doctor didn't seem to think it was worthwhile to pursue, so we also need to better understand that situation.

I will be in town for the holiday week and so can hopefully pin down whatever doesn't happen this week. It's helpful to know that we aren't necessarily in a crisis situation with the platelets and that we hopefully will see them rise at some point.

[Snuuze]

I don't know if this would work for your father, but I took nPlate (weekly shots) for a while and it boosted my platelet count. It was a fight with the insurance company to get coverage, but we finally prevailed. I went from almost weekly platelet transfusions to no transfusions since December 2011. It's fairly expensive, so the insurance company would rather pay for transfusions than the medication. Tough luck for the patient, but that's our world today.

[Harry S]

Thanks Snuuze. I did see posts elsewhere on this site (by the ever helpful Brigitta) that mentioned this medication (and another one), but was not sure if it was fully FDA approved or not (though it seemed OK in Europe). The posts I found on the board were pretty old and it seemed as if it was undergoing trials still at that point. I'll put that on the list of questions.

[Sally C]

Hi Harry S,
The other platelet drug is Eltrombopag (Promacta). I have posted extensively about the miracle it produced regarding my husband. His platelets were as low as 4,000 at one time and he received over 125 blood/platelet transfusions in a 2 year period. He has been transfusion independent for well over 2 years now and has been off Promacta over 2 years as well. It brought up both his platelets and reds. Reds are now normal and platelets over 100,000. Up to that point, nothing had helped.
It is still in clinical trial for MDS at The National Institutes of Health in Bethesda, Md. Please read my past posts for more detail. Let me know if you would like the nurse's contact information.
Best wishes and God Bless,
Sally

[Heather8773]

Hi we saw Dr Rice at Methodist in the Houston med center. He is amazing and has many MDS pts.

[bebop]

I think it is pretty normal too that all counts will drop with vidaza. They should come back up a couple of weeks after the chemo.

[Harry S]

Sally -- thanks for the info. I did look at the NIH trial and it is still accepting patients. Will try to find out if my father is eligible.

I will keep my fingers crossed per bebop and others that the numbers go up on their own, but it is good to know this is an option.

And thanks Heather for the referral!

Overnight, I think we have now convinced my dad to go for a second opinion. He indicates that the reason for his unwillingness for him to do stem cells is that although the doctor originally thought his chances were 30% with stem cells, after seeing his rapid degradation, thinks there is only a 10% likelihood of success with stem cells.

We'll see what Tuesday's appointment and results bring. I appreciate everyone's help as this has provided a number of good questions to ask the doctor then.

[Sally C]

You are correct that NIH is still accepting patients in the Promacta clinical trial. We were there in Nov. for Don's 3 month check-up and they told us it has been so successful, they were trying to expand the trial.
Even though Don's counts are normal (except platelets but they are over 100,000), they told us as long as we are willing to come per protocol, they will take us. They are truly on the cutting edge of these diseases and we are very fortunate to have this security in the future. And of course, because it's a clinical trial, all of the medical treatments and meds have been free to us. What they have done for Don since 2009 would have been quite expensive had we been paying for it.
Best of luck!
Sally

[Kathy S]

Do not give up be persistent. Do not understand why doctor reluctant giving his records to you. They are his records.
My husband was diagnosed May 2013 at the age of 69, with very low platelets 32, WBC 1.9, HGB 8.1. He was started on Vidaza in June at MD Anderson Orlando. He was given 2 units of blood and a unit of platelets.
After his second round of Vidaza things started to get better, along with green juicing and other at home things. (Papua leaf tea daily, along with multiple fruits including a lot of fresh papaya, mangos, pineapple, etc. and many, many prayers.We transferred him to Moffit center Tampa, Fl for follow up and continue there. In august his blood counts came back normal-and continue to be normal. The doctor said by looking at them he could not tell he had anything going on. He just had his second BMB and his blast have dropped to 3 per cent.
It is a frustrating disease for everyone involved. Stay strong to you and your family, you will need it. We have been very very Blessed and take advantage of one day at a time. Best wishes to all of you. Things can get better with a positive attitude. God Bless you. Kathy

[katgio50]

My husband and I strongly believe in getting a second opinion and going to the best facility available. Our local oncologist is great, but was not a spe cialist for MDS. We immediately got an appointment at Moffitt Cancer Center in Tampa soon after diagnosis and saw a specialist. At the time, my husband was in a watch and wait situation. However, when his blast suddenly skyrocketed to 50%, he was told it was time for a stem cell transplant. We were so glad to already have a foot in the door at Moffitt and be able to proceed quickly to induction chemo. Our local oncologist was never out of the picture as he and the Moffitt doctor conversed on the phone. He also said that although my husband could have the induction locally, he would actually recommend going to Moffitt as those nurses do those infusions every day and the ones locally would not be as qualified. If we had stayed with the local oncologist, my husband would not have had the opportunity for a stem cell transplant. (age 74) Go to the best!

[DebS]

I know your head is spinning right now. I want to echo everything that people have said here. Absolutely get a second opinion! And keep coming to these forums. You will find some of the most caring people you have ever imagined! Medical advice is still for the professionals, but virtual hugs are everywhere here

Best of luck to you!

Deb

[Harry S]

A brief note to thank everyone for their input, and provide an update based on today's visit.

My father is going to receive a platelet transfusion on Thursday and his doctor has concluded that the Vidaza is not working so he will be switched to Dacogen in the new year.

We are seeking a second opinion, but so far that doctor's office has not contacted us back. I'm hoping that this will occur next week when I'll be in the same location as my father. I'll also probably work on what is needed for MD Anderson as I'll have access (I hope) to the necessary records.

I did provide a list of questions for the doctor's visit based on the input here, but my father was too tired from today's activities to give a fuller update on the answers. Hopefully I'll be able to provide more details soon.

Thanks again!

[Harry S]

Hi everyone,
My dad has asked me to find out if Dacogen is likely to increase his life beyond the 2-3 years expected if he just gets transfusions. I looked at the pharmaceutical package info at http://dailymed.nlm.nih.gov/dailymed...f-d1c07e3ed8c2 and it says the following:

"Benefit was seen in an additional 13% of Dacogen-treated patients who had hematologic improvement, defined as a response less than PR lasting at least 8 weeks, compared to 7% of SC patients. Dacogen treatment did not significantly delay the median time to AML or death versus supportive care."

My conclusion from this is that Dacogen does NOT increase life expectancy. Do you agree with this interpretation?

Thanks!

[Whizbang]

Harry,

(from my personal experience)... It depends upon his initial response to the treatment...

I personally think that if your dad only did one treatment of Vidaza, there is no way the doctor could have determined that the treatment was not working for him...

My self as well as many others needed time for the 1st, 2nd or even 3rd treatment to determine effectiveness... My 1st treament did little, and actually hurt some of my counts (altough Dacogen not Vidaza)...

As for your question as to the length of efficacy (how long will it work), that is an unknown, but as I said it may depend upon initial response...

I went into full remission after two Dacogen treatments (four treatments is considered a full course), and my doctor told me recently, that considering my strong initial response to Dacogen, I may have seen 2-3 years of full remission if I stayed on Dacogen... BUT the fact that I achieved full remission, as well as all of my positive attributes, 10/10 sibling donor, excellent general health, and relative youth, made me an ideal candidate for a stem cell transplant...

As she put it, why would I wait for something to go wrong...

Also many have seen similar or even longer responses with Vidaza...

[Kathy S]

Harry,
I certainly agree with Whizbang that it does not seem as though the doctor could make such a call after only one treatment on Vidaza. There are many hematologist that are not experienced with many MDS patients. First I would certainly look for a second opinion. My husband actually has had four since he was diagnosed in May and has had three different opinions from them along the way.