[sachbarnesParticipant]

Hi, dads platelets and neutrophils have been coming down over the last 4 months. from 130 and 3 in September, to 42 and 0.75 now. He is only on Len maintenance.

He feels fine too now. For 6-8 weeks until end of Jan he had a chest infection.

My question is how low is too low, and are these levels sometimes peoples range bound levels for remission?

Tx

[gcoulterParticipant]

I’m not sure what the lowest level is just know it drops during the 3 weeks on Len and is why patients have a week off to let them increase again. They generally bounce back up again quite quickly, so it depends when in the cycle both counts were taken. They won’t start the next cycle if the counts are too low.

Do ask about his iron levels as this is sometimes overlooked. My wife is on Len and found put her iron was low, after an iron infusion she felt much less tired and it boosted her blood count.

Graham

[sachbarnesParticipant]

Thanks will ask about that

[kh0305Moderator]

Hi Sachbarnes
In similar position at moment as dads neutrophils had dropped very low (they had accidentally kept him on too high a lenalidomide dose for far too long…!!!) and so he’s been off his meds (IRd) for a couple of weeks on top of the usual week off, to try and get them back up again. Another blood test tomorrow so let’s see how it is looking. I would imagine if they get too worried abut your dad’s levels they will do the same to try and get them back up? xx

[sachbarnesParticipant]

Hi yes they usually have a cut off to pause until they come back up. also will have him try the papaya leaf extract people talk about which boost levels (I did another thread on that). and also ask about GSCF injections to boost. They don’t like giving them out as they are £800 a pop.

[mulberryParticipant]

What dosage of lenalidomide is your Dad on? When my neutrophils went under 1.0 several times, my 10mg dose was cut to 5mg 21/28 day cycles. I think my platelets were reduced too, but I can’t recall the figures offhand. My consultant said the risk of infection with neutrophils under 1.0 outweighs the benefits of the maintenance. Lenalidomide can be obtained in 2.5 mg doses so it must be possible to reduce to this level, alternate days, if necessary.
I don’t know what the long term repercussions of not being able to tolerate 10mg maintenance are, but it is what it is and there seem to be a number of us with this issue.
I hope your Dad gets answers soon and a means of raising both platelets and neurophils.

[kh0305Moderator]

Hi sachbarnes,
Hope it goes well. I saw your post on papaya extract and have mentioned it to dad so let’s see if that helps. Good luck xx

[sachbarnesParticipant]

Hi Jane, hes on 10mg Len maintenance. Oxford Churchill has a 30 platelets and 0.5 neutrophils threshold before a pause and then on recovery above, it would be at the 5mg level. But as his numbers are still above that they say they aren’t concerned and carry on as normal. We are on holiday end of the month so ideally want a blood test a few weeks before that to make sure things are improving/stable.

Hi kh, yea read some really good things about it, and one of the few things that boost both platelets and neutrophils that I could find. I bought the herbal magic Papaya leaf powder one from amazon in the end, as reviews looked good. Goats milk is also supposed to be quite good, so have told dad to try and change to that. Cows milk on the other hand is actually bad for platelets apparently!

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