Has anyone ever heard of this????

[Sarah.P]

I was reading through my dads most recent marrow biopsy and came across two things I didn't know and when I looked them up the definition was somewhat distressing. I called my dad and asked him if they spoke to him about these things and they did not. Are these normal for a patient with MDS or is it unknown to any of you?

rare large platelets
very rare megakaryocytes

I know that sometimes terms are used like the rare part but doesn't actually mean rare per-say. Either way I'm hoping that maybe someone here has seen these terms and can help me out.

Thank you so much in advance for the responses!

[DanL]

Sarah,

I have seen these terms in my own biopsy reports. Both large platelets and rare megakaryocytes (precursors to platelets) are fairly common in MDS. Some people have greater issues in their red blood cells or white blood cells, and some, like me are primarily concerned about platelets.

The real issue is what kind of effect, if any, is this having on the patient. I have had between 20k and 30k platelets in my peripheral counts without too many issues except for the very colorful and large bruising when i run into something or something falls on me. An ice pack and pressure applied to the site of the injury normally limits the damage. I also have a prescription for AMICAR, in case I have any bigger issues. Sometimes Amicar is prescribed to be taken to prevent bleeding events prophylactically (sp?).

Low platelets can be dangerous, especially if you have a high risk of falling or other injury in your life. It can also be an issue if your father is platelet transfusion dependent, as platelet transfusions only last for a few days at most. Platelets typically stay in circulation for no more than about 10 days to begin with, so transfusions usually have a lot of almost burnt out platelets.

The best practice is to take your time while doing activities that have potential for injury, limit your exposure to these items, and know what to do if something does happen.

I hope this helped.

[Sarah.P]

DanL,

Thank you so much for the response!! It helped greatly! All his counts are low actually. He is currently dependent on Red transfusions but last month they had to give him, I believe he said 2 units, of platelets when he had to get 4 units of red blood. It feels like everything is moving so quickly with this. His chemo has already stopped working and he hasn't even been on chemo for a year. I knew what to expect but I never knew it was going to move so fast . He says he's having problems with his hemoglobin now. Do you by chance know if this is normal for MDS? He has MDS REAB-1 with excess blasts. His counts went up for about 2-3 months then just came right back down and now his Dr.'s said they need to watch his hemoglobin because it's down as well. They told him recently in the last week that his platelets are "tolerable" but his red and white cells are still very low. This entire thing is not only scary but seems to get more confusing with every Dr. visit!

[DanL]

Sarah,

I am sorry that your father is not responding to the treatment he was receiving and that his counts are dropping. As you may have found, normal and MDS very rarely collide in the same sentence, as "normal" for one person is different for the next. MDS is a collection of diseases that look similar, but affect each person a little differently, so while i am fine with my 24k platelets, other people experience problems at 50k, and others are fine all the way down to 10k.

Progression of the disease is an expectation over time, especially when a patient has excess blasts, several chromosomal abnormalities, or other complicating conditions, but the rate of change is variable from person to person.

As for the response period, any response at all is good, but freqeuently, the response periods are relatively short (2-3 months to 3 or 4 years). The good news is that there are several treatments available, and different people respond to different treatments. It is really important to find a good doctor who is willing to work with you as much as possible and as much as is responsible for the patient.

[Birgitta-A]

Hi Sarah,
I looked at all your posts but I could not find the name of the chemo your father has received and responded to during many months. Is it Vidaza?

You know when a patients has responded to Vidaza and the drug no longer has any effect (or never had any effect) there is a risk for decrease of all counts.

These patients should try to get a Stem Cell Transplantation if possible. If this is impossible because of the patient's age or other diseases the patient should try to participate in a clinical trial for MDS.

Will your father allow you to ask his doctor if a clinical trial is an option for him?
Kind regards
Birgitta-A

[Sarah.P]

Birgitta-A,

I do believe that he was taking Vidaza but I'm not positive on that. His latest BMB results say he received treatments including Decitabine if that helps. When I ask him he can never remember the name of the chemo. I spoke to him yesterday and he said they won't be doing chemo at all anymore because it stopped working. Because of his health and age they won't allow a stem cell transplant which I kind of expected when I read it was an option even before his Dr. told him about the current available options (at the time). When he first started chemo I spoke to his Dr. and was told we were only trying the chemo to try to hold off the AML for as long as possible. They were hoping for 2 years before it turned into AML with the chemo treatment but since chemo stopped working I don't know how long until it does. This is such a special condition with so little information it just makes you feel so helpless and uninformed. I was and still am so very grateful to have found this forum!! It's helped so very much it's just incredible! His next appointment isn't until the end of next month so I'll make sure to remind him when he drives in to ask his Dr. if there are any studies he can participate in in that area! Thank you so much for the suggestion!

[Birgitta-A]

Hi Sarah,
As far as I understand your father was treated with Dacogen (decitabine) and responded initially but not now so the treatment is stopped. We still don't know if the chemo will work or how long time it will work if it is working.

You can look for clinical trials at this link. They want to know where your father is living and his disease (MDS).

Hope you find a phase II trial (a trial that has showed positive results in a phase I trial). Most reseachers now recommend a combination of two drugs.
Kind regards
Birgitta-A

[Birgitta-A]

Sorry! I forgot the link: http://www.clinicaltrials.gov/
Birgitta-A

[Sarah.P]

Brigitta,

Thank you for that link. I found 2 possible studies but after looking more into them he doesn't qualify for either one. I guess at this point with his age and health I just need to be more prepare to roll with the punches as they may come. It's never easy but with this forum and the support of so many it makes it easier. Thank you again so much for the help and thank you for clearing up the Dacogen thing too! I happy I found that one little word that didn't stick out the first time I read it.

[Birgitta-A]

Hi Sarah,

Too bad that there not are any trials for your father!

You know many patients are treated with drugs that stimulate the red blood cells - so called EPO drugs like Aranesp.

Then there are drugs that stimulate the white blood cells for example Neupogen. Many doctors think that Neupogen and similar drugs can give AML but many studies show that MDS patients can tolerate that drug without that problem.

No drug for platelets is approved for MDS patients. We have to try to avoid everything that can decrease platelets for example many pain killers.

Infections will decrease all count so we have to try to avoid all kinds of infections.
Kind regards
Birgitta-A

[Sarah.P]

Hi Brigitta,

Thank you for letting me know about those. I'll do as much research as I can as to what he use for his counts and I'll make sure he knows before he sees his Dr. again at the end of the month. I have to say I am so very grateful I found this forum and even more grateful for people like you that are still more then willing and able to help other people when you can! You just don't see many people like that anymore!

Thank you again so much!!,
Sarah

[Birgitta-A]

Hi Sarah,
You know I learn a lot when I search the net for info, so it is a win-win situation.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, tx dependent from dx due to severe bone marrow fibrosis. Supportive therapy with txs, iron chelation and Neupogen for low WBC until 2010 when I accepted Thalidomide + Prednisone with positive effect.