DRASTIC PLATELET DROP

[Karen Scerbo]

Good morning everyone,

I just received approval to join this fantastic resource. My mom, 85 years of age was diagnosed with MDS Low-Risk, 5 q deletion in August of 2019. She’s been receiving Procrit and Once Monthly Blood Transfusions and weekly CBC. With the exception of the Hemoglobin levels, her other counts WBC and Platelets have been normal. However, this past Monday’s appointment with her hematologist/oncologist, her platelet count plummeted. He asked the phlebomomist to run her blood again. After the second re-check, he asked her to send the blood out to Lab Corp. He never mentioned the new cytopenia, Im assuming, because he wanted to triple check. Lab Corp notified me that results were in her patient portal so I checked immediately. Her platelet count was 110,000. Her white counts, thank goodness, are fine 5.3 WBC. Peripheral blood smears indicated macrocytes and ovalocytes, no blasts. Also, her HB went from 8.0 to 6.8 in a week. Her normal drops are usually .3 to .8 tops. She had extensive blood work done via the outpatient lab at our local hospital 3 weeks ago, and her platelets counts were 245,000. My questions are: has anyone had a dive like this before, what is the treatment for low platelets, is this a sign of disease progression? Thank you so much for any assistance on this. We see the oncologist again on Monday, but, I just want to be “prepared”.

[Amy Clark]

Hi Karen,
I am sorry your mom is going through this. She is lucky to have your support. Platelets going from 245K to 110K, while not great, are not that big of a difference from what my husband’s does during the “good” part of his cycle. Our hospital gives platelet transfusions, which he has needed on occasion, when you hit 12-15K. Could it be that her docs were more concerned about the Hgb.? I hope you get some answers Monday. God bless you, and let us know what happens.

[Karen Scerbo]

Amy, thank you for your reply and your kind words. You made me feel SO much better I cant thank you enough, seriously! Reassurance is very lacking with MDS right? One thing I’ve learned from this experience, it is a roller coaster on a many levels. Im trying to navigate the twists and turns. I will repost after today’s visit and calm my nerves in the meantime. If I may ask… from what I understand, platelets only last 7-10 days, requiring frequent transfusions, so Im envisioning weekly trips to the hospital unlike the 4 to 6 weeks with the blood transfusions. Is that a reality with low platelets; weekly visits? I guess what Im asking is, how does it work when platelet transfusions become necessary. And am I correct in assuming they do fluctuate occasionally? THANK YOU !!

[Amy Clark]

Karen, I know there are others more educated on this forum about platelets, but I can tell you what I know. Depending on how MDS affects the individual and the stage of the disease, platelets can be severely affected to the point of needing transfusions a few times a week. Blood can also be needed very often. Also, medication can affect blood and platelet levels. When my husband first started on dacogen he needed four units the second week and one unit of platelets. The range is very wide and varies. At some point for some people, the inability to retain blood and platelets in adequate amounts even with transfusions is what leads to their passing. I suspect you knew that on some level, since this is what happens to the blood and platelet production when your bone marrow is failing from cancer. Lastly, when your white count production is too low, you can get an infection that you cannot fight off. God bless you as you help your mom.

[Karen Scerbo]

Thank you Amy again, for responding! I just wanted to give an update. We went to the Hemo/Onc on Monday, regular weekly CBC Done. As expected a RBC transfusion, was needed (6.4) typical .6 drop for her. I asked the Dr about her platelets, he said they 134,000 (tremendous relief) albeit shortlived. However, he, again, sent her blood to Lab Corp. I read the Lab Corp report this morning, and her counts are even lower than last week, down to 68,0000! The difference was remarkable between his counts and lab corps. I asked him about potential bleeding issues, when he will be on Holiday for 10 days. He said at this point, there is not a concern. I will address the discrepancy between his Hemo-analyzer and Lab Corp’s when we see him on Monday. Oddy, though, his hemo-analysis and Lab corps were exact matches with regard to the WBC and RBC. I will continue to post with any breakthroughs or set backs. Until then, God Bless everyone.

[Donna]

Hi Karen…..I had low WBC, RBC and platelets. I was on watch and wait for a long time. The doctor said when my platelets went to 50,000 I could no longer take Advil, aspirin, any antiflamatories. When they went to about 20,000 we started Dacogen. I did 3 cycles and at one point my platelets went to 8000 and I had a transfusion (1 bag). After the 3rd cycle (August), the MD stopped treatment, as my neutrophils had gone to 0.2. My platelets have continued to go up since then and now are 112,000, neutrophils went up to 1. but are now at .7. WBC stayed around 1.4 throughout everything. Hemoglobin went down during treatment to 7.5 and I had RBC transfusion. They have gone up some. I am going to resume treatment with Dacogen in January. The hope is that I am starting with higher numbers so maybe I won’t bottom out and have such a hard time. So, my message is that I wouldn’t worry too much about platelets until 50,000. Mine went down slowly at first (over a year) and then started to drop thousands each month, so then I was on weekly blood work. I wish your Mother well. MDS certainly can take some twists and turns. Donna

[Karen Scerbo]

Thank you Donna for the reassurance. VERY much appreciated. Its so comforting to know that living with low counts is very “doable” for years. There is no rhyme or reason to MDS. I’ve been a planner all my life and with this diagnosis, it shook my world on many levels. We never know what we’re going to hear. My mom, thank God, did not need to be transfused platelet-wise, over the holidays. I was certain that would be the case, as her numbers were plummeting so egregiously, weekly, that I thought for sure, there would’ve been an issue. Since I mentioned to her hemo/onc the discrepancy between the in house CBC and Lab Corp. results, my mom hasnt had “outside” blood work done. I check her very often for signs of low platelets. Considering she gets bloodwork done weekly bruising on her arms is my first go to. So far, so good. From what I read from very old posts Neil gave me a lot of clarity with regard to clumping, edta etc. which for the most part, has me siding with the in house analyzer. Right now, we are still doing palliative care, when her hemoglobin drops below 7.0. I was also certain an BMB would be done, after the holidays, as I feel the platelet drop is a sign of disease progression. She had her hemp/onc appointment yesterday, with a CBC done, and there was no mention of either a drop in platelet or wbc, or a bmb (my brother took her to the appt I would’ve asked). However, she needs a blood transfusion, down from 8.4 three weeks ago to 6.4. The doctor closed his office for two weeks, so she missed her weekly Procrit shot, (1 x) which we think, explains the drop. As I learned from OncLive, oncologists look at trends as opposed to numbers before concluding there is disease progression. I will keep MDS forum posted as we proceed through this journey. My deepest regards to all. Here’s to a much better 2020.

[Donna]

Hi Karen,
I resumed my chemo (Dacogen 5 days in a row). My platelets were 123,000 before I started. The next week blood work, they were 103,000 (not bad). This week they were 26,000. So that is an enormous drop. I have a few new bruises. I’ll see how they are this Monday. My ANC dropped to .3, so I have to stay away from crowds, sick people, etc…..work from home when I can. Just thought I would update you.
Donna

[Ian Palangio]

With MDS blood counts for me seem to go all over the place. 8 months ago my Platelet count was very high at 900 (looks like you might call this 900,000 wherever you are). Now my platelets are dropping fast – and are down to 30 (or 30,000). Dr is hoping this stabilises soon – as it can’t drop much lower. I’m losing abuot 10,000 in count every 2 weeks.

[tam]

Ian:
Below is an earlier post of mine about platelet counts.

For low platelets you might want to try organic dry papaya leaf. I buy 1 pound bags of organic leaves online from Starwest Botanicals, but there are other retailers. I buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for six years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.
TAM

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