Low Platelets

[lukejensen27]

I just got back from my visit to MD Anderson and had a platelet count of 89. My last readings from about 4 months ago were 166. I was very shocked by how low these levels were. Dr Keating was not worried about this at all. He said it could be from having a cold which I had a couple weeks ago or from the flu shot which I had about 2 weeks ago. He just said we will retest your blood in 3 months. Anyone had their platelets drop like this in just a couple months? I did have a reading of 138 before but nothing under that. My other numbers are WBC 25 and ALC 18.

[baq724]

I am sure you are quite bothered by this reading, but I would say that Dr. Keating had seen this many, many times before. Your other numbers aren't bad at all and this is most likely what he said. If he isn't worried and you feel good, try not to worry too much. Sorry, I can't provide any insight...just wanted to give you some encouragement.😊

[lukejensen27 in reply to baq724]

You're probably right! He said if you were my son I would not be worried at all. The thing that bothers me is that I have been in stage 0 since I was DX. I have no swollen lymph nodes and no swollen spleen but with Platelets under 100 now does this put me in stage 3? Maybe I just need to relax and see what the test in 3 months will be. Stupid CLL. Thanks for the response BTW.

[baq724 in reply to lukejensen27]

I hear ya. Tough to relax with stupid CLL. I have finally started to feel a bit better, but still have those panicked moments. You could always go to your GP in about a month and get a CBC and see if they have rebounded. (If you don't want to wait 3 months). Is Keating your only doc? Or do you have a local hematologist you see as well?

[lukejensen27]

I have a hematologist I see in the town I live in. I might make an appointment for next month to see where my counts are then. It's just something I hate dealing with and how busy things are with my job and other non CLL things in my life. It's just hard.

[baq724 in reply to lukejensen27]

yep, I get it. Hopefully, your busy job and non-CLL things occupy your mind and allow you to "get on with things". Busy is good!!

Stay well!

[intermark]

I was DX w/CLL going on 4 ys ago. I was lucky that when that happened my "character" MD said : I´ll give u the bad news first, which are that you will die, but, but then, so will I, and everybody in this hospital, and the good news is that u will die of something else when ur time is up. (the message was: Thank God that he sent you CLL and not something much more serious and acute) Thus, we should all learn how to live with CLL and make the needed adjustments in our lifestyle. I know people here in Mexico City who have done precisely that for 20 or 25 years and who have led active and (relatively) healthy lives. If you have a good team behind you, concentrate an "waiting and watching" and with some luck at your tender age, you will be around for a long time. I suggest also, you concentrate on learning about your condition as much as possible, and realize that due to the many herbicides and hormones food in the US, and elsewhere, is full of, there is a quasi epidemic of leukemias lymphomas and myelomas, but as a result there is a plethora of, good, effective new medications and procedures, so stay aware of any that may fit your case well. Just make sure that your physician keeps abreast of all the proven protocols and the new developments. So, good luck to all of you . David

[Gisygirl in reply to intermark]

I was DX with CLL with 17P deletion 3 1/2 yrs ago just before I turned 61. One year before symptoms prompted the start of treatment which has been Imbruvica. Handling it well. My platelets have dropped as low as 112 but my hematologist says not to work until they hit 50. All my numbers are mostly in the normal range now. But when 1st diagnosed, he did say "if you have to have cancer, this is the best kind to have". Somehow that was not comforting. I get red blood blisters in my mouth from time to time that are like blood filled canker sores that last just 1 day. Anyone else have this? My doctor tells me to tell others I am going great! So maybe I am worrying too much. I am so happy to find this support group.

[aoakes0001]

If your speaking of CLL my platlets are at 99 while my wbc is currently 34. At the high so far my platlets have hung around 100 while my wbc has dropped from the high of 42. My Dr. tells me the numbers can go up and down dependent upon how much is released into the blood stream from bones. I don't know if this info helps but at least you have it to evaluate.

[jettyguy]

Luke,I had platelet problems years before my CLL diagnosis. I'd suggest that you google the Platelet Disorder Support Association. They recommend using a Macrobiotic diet, based on getting very positive feedback from patients who have improved their platelet count! I have gone on a strict MACROBIOTIC diet for the last year,since diagnosis. My platelets went from113 to 172 within six months. Platelets bounce around,however you can influence their proliferation by the food that you eat. I noticed that when i focus and really eat these things with regularity ,my platelets go up: Include watercress,kale,broccoli,cauliflower, Napa cabbage,aduki beans,almonds,sunflower seeds,pumpkin seeds, sesame seeds, flax seeds,brown rice, celery, leeks and eat lots of carrots. Also watch how much green tea you drink and the manner of how you drink it. Too much green tea for me may actually influence my platelet count. What I have found with certainty, is that if I drink the green tea with meals,consistently, my platelets go down. I still recommend green tea for other health benefits,but urge you to drink the tea 4 hours before and 4 hours after you have eaten. Also, exercise affects platelet proliferation, so try to walk 2 miles or jog in place for 20 minutes daily. Hope this helps you somewhat.

[Lola69]

I had platelets at 33 in 2015. Imbruvica Made th

Go up to 120! my doc says up to 10 no danger

[lukejensen27 in reply to Lola69]

My Platelets dropped to 13 after starting Ibrutinib. Had to stop Ibrutinib for a couple weeks. Was put on Promacta then they went up to like 280. I’m on the Ibrutinib plus Ven trial at MDA. I’ve been off the Promacta for probably 8 months now and my Platelets hover around 160ish.

[Lola69 in reply to lukejensen27]

So many combination therapies going on. Have u ever tried ventoklexa and Rituxin?

[Hidden]

The drop in platelets can be disconcerting. Mine dropped from around 120 to 86 in August of 2016. My doctor put me on a two month blood test cycle and simply watched me. Now 18 months later my platelets are at 80. Over the last 18 months my platelet count has bounced around between 80 and 100. I think they have been lower because I have had a couple of "events". For example last April I nicked myself shaving and it took four hours to stop bleeding and I have had two episodes of petechiae on my feet/lower legs. But other than that I am living with platelets around 80-85 with no serious effcts. My WBC is 102.