[Karen Scerbo]

Thank you Michael!

I am very relieved that the blasts do occur occasionally, your oncologist echoed what my mom’s did. I really adore the doctor and trust him implicitly. Unless he is 120% sure he will not commit to a prognosis/diagnosis(such as disease progression) He told me the only indicator would be a bmb but obviously that cant be done, so he too, relies on trends and consistency and he refuses to worry me, needlessly. You gave the me second opinion I was looking for! I hope your numbers remain stable and on the watch and wait for many years! Mr. Boring is a good title. My best regards !

Karen

[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.

[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.

[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 !!

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