Low platelets ???

[krishananth]

Hi,

My dad has been suffering from MDS – RAEB and has been transfusion dependent for the last 6 months now. Thalidomide – did not work rather he could not continue because of the side effects. So he is currently on Danogen. We are also exploring the options of trying out vidaza and revlimid. we stay in india and these are not available here. So we are also checking out ways and means of importing them here. But his decreasing platelets is worrying us now.

The current cause of concern is his lowering platelets. The last report as of yesterday shows a count of 10,000.
He has been having frequent black colored clots on his tongue but then some days they are real big and sometimes the very next day they vanish. Only one instance so far where the clot went to be nearly 5 – 6 times it size and he was given platelet transfusion too. But inspite of that his counts were at just 35,000.
We are confused what could be the solution.

Your suggestions in this regard is greatly appreciated.

Thanks
Sandhya

[Russ P.]

Sandhya, Revlimid may not be a good choice because of his low platelets which Revlimid will reduce further. Also Revlimid is used for a certain chromosone defect, -5q deletion. If azacitidine (Vidaza) is not available consider decitibine (Dacogen). Hope this is of some help.

[patti]

Sandhya,

Unfortunately, the new norm for your dad may be platelet transfusion dependency. My MIL has to get platelets every week. By the time the next week rolls around she’s down to 2000-4000 platelets. She’s had 30 platelet transfusions so far and we know she can become refractory at anytime.

If your dad chooses to do the Vidaza or dacogen be aware that they will have to support him with frequent platelet transfusions (perhaps several times a week) until those drugs kick in and start to work. Then hopefully they would raise his platelets.

The mouth sores he is experiencing is not unusual for someone with low platelets. Usually once a person gets a platelet transfusion those sores will go away until their platelets drop again. I know for my MIL we can literally watch hers go away as she’s getting the platelets. If they are too big (sometimes she gets them the size of a quarter) they will take a couple of days to get better. Unfortunately, the mouth sores come with the territory of low platelets.

Patti

[Russ P.]

Patti,
Apparently your MIL is still hanging in there. I pray the suffering will not be great in these last days. Blessings to you.
Russ

[patti]

Russ,

Ah – the roller coaster…. She has done a 360 and is doing much much better. Basically back to where we were a few months ago. Platelets weekly and blood every 2-3. It took her about two weeks to recover from being in the hospital for 24hrs, but she did. We didn’t think she was going to she was doing so poorly. She is definately weaker – no question about that. But doing okay. Feels like she can cook meals again. We are no longer running 24hr care shifts for her.

The biggest issue we are fighting at this point is she has zero neutrophils and only 800 total white cells. All of her white cells are lymphyocytes. She’s on a prophylactic antibiotic 3x’s a week hoping to hold off any bacterial infection. But if she gets something viral they’ll be nothing we can do. Her neutrophils have been at zero for over a month now.

Thanks for praying…. sorry about not updating you sooner. It’s been a little crazy.

Patti

[Russ P.]

Hi Patti, God answers prayer in wonderful ways – it’s good to hear about the 360. If it’s any help on the viral concern, here’s what I take:
400mg acyclovir 2x/day. This in addition to Levaquin antibiotic 500mg 1x/day and flucanzole (Sp?) antfungal 1x/day. All this and my neutrophils were 350 last Monday. The big issue here is QOL and I’ll pray to that end.
Russ

[patti]

Russ,

Mom was on Levaquin after she left the hospital and they didn’t want to keep her on it because they said they try to reserve that for major infections since it’s one of the better ones. She’s on Bactrum Double Strength right now. It seems like it’s just barely keeping her temp in check. On the days she doesn’t take it her temp starts to rise again.

I’m not sure how we’d feel about the anti-viral/anti-fungal. She takes a lot of natural anti-fungal stuff right now but the anti-viral might be something to consider. I’ll research it and see what I find out. Yep, we’re also just aiming for QOL right now also. I told her the other day she should probably wear a mask when going out in public but she was adamantly opposed to it. At this point, her comfort is probably more important then how fast she’s gets an infection.

Thanks for the prayers. Praying all goes well with you too.

Patti

[Author]

Posts