Low platelets months after treatment ending

MandaLynn

Hi, I'm wondering if anyone else has this issue.  I finished chemo in May and rads in August, I still have low red/white blood cells and low platelets.  I was scheduled to get my port out tomorrow, but my onc says to wait because of the low platelets (not good to do any surgery because won't clot properly with low platelets).  She said that if they don't go up soon, they'll need to "explore why they continue to be low."  She mentioned something about looking in the bone marrow.  Ok, so my panic meter is going off!  Also, looked at blood tests from 2006 and was surprised to see low white cells/platelets then for me.  Apparently my immune system has always been a little suppressed.  Wonder if that's one of the risk factors for getting bc in the first place.  How do you elevate your immune system???  Anyone else with low platelets for an extended period?

MandaLynn

Hi Sherri,

 Well, it's good to see that someone else knows what I'm talking about.  I was starting to get worried because I saw something about breast cancer spread to bone marrow and like other stage IIIers I figured well that's got to be me.  I guess I'll find out more when I see my onc (she's a hematologist as well).  I also read last night that one of the SEs of chemo is chronic bone marrow suppression (or something like that).  I think I'm just worrying needlessly.  It is, however, inconvenient because I want my port (and ovaries out) and my onc doesn't want me doing anything until my platelets go higher (for clotting).  Not sure how risky it is.

 Love following your posts, by the way.  I watch these boards a lot but don't post much.  I really feel grateful that there are Stage 3 ILCers here.  It can be so frustrating to be in this minority.  Thanks for the info. 

florencedonna

Hi Amanda,

I am worried about this too.  A week ago I would have written freaked out by it, but I've calmed down a bit.  All my counts were lowish after chemo in April 2006.  Over time my Hgb and WBC got better but my platelet count continues to slowly drop.  I'm down to 85 (85,000).  I thought it was a drug reaction to prozac but I was wrong.  I can't see it as the new normal because it is still dropping.  My platelets are actually lower after chemo than they were during chemo!!!@!! 

I am getting myself mentally ready for the recommendation of a bone marrow biopsy.

I am suppressing the worry it is bone marrow mets or chronic bone marrow problems from chemo.   I joke, you know you've had cancer when idiopathic thrombocytopenia (an autoimmune disorder where your body destroys your own platelets)  would be the least worrisome reason for your low platelet count.

Donna

MandaLynn

 Donna,

It's funny (well not really), but this is just one more thing that is slowly sinking in -- exactly what the side effects from treatment can be.  I just read about the idiopathic thrombocytopenia myself. I find myself saying "Oh jeez not something else" pretty much every week.  Seems like they can't tell you all the bad news at once, but in little shocks over the course of months.  I think my platelets are around 100.  I'd like to get the biopsy (ouch) but am thinking that right now I don't want anymore bad news.  

Seems like you've been dealing with this for a while - sorry about that.  When you finally get ready to look further into the causes of the low platelets or find out any new information, would you please get back to me?   

I'm frustrated because I want to be able to move ahead with reconstruction etc...  Oh jeez, hope this doesn't eliminate me from DIEP surgery next year. 

Amanda 

TammyLou

I am 4 years and 2 months out from my last hard chemo.  My WBC is still in the ditches.  (sigh)

The crazy hand-washing lady...

tl

MandaLynn

Tammy,

I was my hands like crazy too.  I'm more worried that the low platelets are a sign of cancer in the bone marrow.  But, I just read something interesting that both the tamoxifen and the bisphosphonate I am on can cause mild thrombocytopenia (low platelets).  I hope that's the issue for me.  Doctor wants to do a bone marrow aspiration to find out (i.e. eliminate the idea of cancer in the marrow).  Not sure I want to go there.  Maybe I'd rather not know.

 Amanda 

florencedonna

Amanda,

I had a CBC on 10/30/09 with a platelet count of 85, repeated 11/28/09 and the platelet count was 132.  I saw my oncologist on 11/30 and he seemed totally unconcerned.  I am more concerned than he is!  I am happy that the count came back up but I don't feel confident it will stay up.

He doesn't want to do a bone marrow unless the platelet count drops below 50.

 Here's hoping your counts stay stable or even improve!

donna

evieo

My WBC, RBC, Hematocrit, MPV have been low since I finished chemo in Sep, 2007.  My plarelets are finally in the normal range but I have a High reading for MCH, Mono%, Baso%. The onc does not seem worried nor has he ever suggested a marrow test.  He did tell me once that the WBC and the RBC may never recover because the chemo affected the bone marrow.  I do take lots of supplements so I guess I better do a little research to see if I am doing anything I shouldn't.

weety

Girls, I hope you don't mind me joing this thread (I'm not stageIII) but I'm having the same issue and scares about low platelet counts.  I finished my TCH chemo right before Christmas.  Platelets dropped a bit here and there during chemo, but always seemed to hover at the low end of normal.  After chemo was over, there was an initial surge (up to 422 a month out of chemo) but now they are going down, down, down.  Everytime I have bloodwork drawn, there are down a little bit more, even though they are still in the normal range.  In the last 2 months they have gone from 296, 256, 249, 215.  I'm worried this downward trend will continue!  Could I just have "tired" bone marrow as my onc seemed to thiink is the reason?  I'm sick of worrying about every little thing!

ruthbru

My platelets & WBC have never come all the way back, and I'm more than 2 1/2 years after last chemo. I think it is pretty 'normal' !

ElaineD

I'm on carboplatin+herceptin at the moment, and my onc never goes ahead unless platelets are in the region of 100. And after 3 weeks they never are-they usually hover at around mid 70s. They can change alarmingly from day to day (after 3 weeks he checks them daily, so we can go ahead asap). I'm glad to hear of others having the same problem (but really sorry you're having it!). At the moment, he doesn't seem overly concerned, as they do creep back up to 100ish by 4 weeks, and he feels that a 4 week cycle tends to be better with carboplatin anyway. I'm concerned though, at how long some of you are out of treatment, and still having this problem.

Wondering if weety could maybe elaborate on "tired bone marrow"? (The rest of me is pretty knackered, so why not the bone marrow too!?)

AnacortesGirl

All through chemo (6+ months) my platelets were 160-120.  This last Monday there were at 103.  Since next Monday is my last chemo I'm really concerned that if they drop below 100 he'll delay it.  That's the absolute last thing that I want!! I want to be done. I talked to the nutritionist and she said as long as I'm not taking fish oil there is nothing I should avoid.  However she did say that I should be getting 75 grams of protien a day during chemo.  Well, a little to late for most of it.  But this week I'm eating the protein bars, Boost and lots of meat.  A long with making sure I drink plenty of water.  I'm hoping this helps the count.

weety

Elaine, I'm not sure what my onc meant about "tired" bone marrow.  I think she just meant that it was tired of getting slammed with drugs and then having to spout out extra blood cells and then getting slammed again, etc.  Maybe it just needs time to regulate itself?  Maybe it lost the regulation of making "the right amount" of cells  and it's trying to figure it all out again?

ElaineD

Sounds pretty logical weety. Mine certainly do seem to recover-but take longer than they "should". Plus getting them up to 100ish, is scarcely good-just good enough to continue with treatment. As stage 1V I need to get as much as I can from every possible chemo there is, so am hoping to be able to stay on carboplatin for a while yet. Am due cycle 5 on Friday...but I bet it'll be next week before we go ahead! Incidentally, have heard that organic red grape juice can help-so am quaffing plenty, but not seen any change so far (But I enjoy it, so what the heck!)