Low platelet count of around 120,000: What should be looked at?

My platelets have ranged from 50 to 80 for the last 2.5 years. We check blood every 3 months. When they got to 50, I had extreme fatigue & headaches, but now back at 70, my energy is good and I can do what I want. Two bone marrow tests revealed problems with specific chromosomes pointing to MDS or maybe CMML. As my hematologist put it: “something is brewing in my blood, but it going slow and we will continue to keep an eye on things.”

I do get spells of being really tired, but so far energy has always returned. I’ve done acupuncture to help calm me and have been drinking a sort of super-food shake most days which seems to keep me fit and regular. I got the recipe from a nutritionist. I drink dandelion tea and eat papaya as both were recommended to raise platelet numbers. The papaya messes with my stomach, so don’t take it as much.

I still bruise a lot and bleed if I get any kind of cut. Healing is a slow process, but eventually cuts close up. I’ve lost more than 40 lbs over these last two years which brings me down to an acceptable BMI. I didn’t diet, just did my shake and am generally just not hungry. I haven’t been on any medication. Living every day and focusing on others has been helpful in keeping a good attitude. But the watch and wait is still unnerving.

Hi @not2day, I love the username. It rather sounds like you're telling the slow brewing something in your blood that "not today" are you going to be a diagnosis for me.

I get that the watch and wait is unnerving. The term sounds like your just waiting for the other shoe to drop, so to speak. I prefer the term active surveillance. It sounds more proactive and like your team (including you) are on top of things, ready to respond when or if necessary. You sound like you've taken control of what you can control. Staying fit, eating well and managing your stress levels.

How often do you do acupuncture?

Good Morning all, yep the wait and watch can be unnerving but it is not a bad thing, since our platelets go up and down. Mine have been as low as 55 and as high as 82. My normal is 70. I go to onocologist/hemotologist every 4 months now. I have had 2 biospies and with the MDS diagnosis I have 2 gene mutations of SRSF2 and TET2. If I hurt myself yes I bleed badly and have to watch out for that. I bruise horribly and finally (hope I don't offend anyone) just tell people its rough sex. Funny not funny but hey got to keep the humor going. I do what ever I want, I tire easliy too, and you just have to listen to your body. I eat good, got a good weight and for a 76 year old lady I have lived with this stuff for many many years. Hang in there, don't over think it, God has us in the palm of his hand.

Blessings to all.

hollie

I am 66 years young and was diagnosed with MDS syndrome #5 , I am asymptomatic tho, as I was diagnosed April 5, 2024. I go every other week for injections for red and white blood cells. My platelet count keeps going up and down too. I asked my oncologist if there was anything I could eat to make the counts go up and he said the Revlimed immunotherapy takes care of that.
I bruise real easy too and sometimes I don’t know how I get them? My doc did say I could live for another 20 years if I do what I’m told, and after 4 blood transfusions and 1 stroke, (not heart related, as my pcp gave me a 28 day heart monitor and my heart was in all the normal ranges). I believe I was getting too many injections, as I was going 3X every week from middle of April to end of September when I had my stroke.
I have a bad case of anxiety, because I still work full time as a health assistant in a public school with only 3 - 5 year olds.
They are what keep me going. My husband passed away almost 12 years ago from Lupus and a pulmonary embolism, as we did not know he had Lupus and he was a ticking time bomb. Lost him within 3 days of taking him to the hospital.

usmcmom- Every other week for injections? You are on watch and wait with the MDS? Is this your only solution? What are you getting injections of April-September.
I had MDS and was offered a watch and wait or a bone marrow transplant. I already just walked through breast cancer, so I said BMT! Have they offered that procedure. I am interested in seeing why they are treating you as they are. I hope you feel good, so those 3–5-year-olds can enjoy your teaching.

I am taking Aransp & neuopogen(Sp)
I was taking Plavix for a blood thinner, as I got a blood clot on the right side of my brain. Not due to heart problems as my PCP doc had me on a 28 day heart monitor and everything about my heart was in the normal range. I don’t want the BMT, because my age is against me and I do not want to recuperate at a nursing home. My husband has been gone for almost 12 years now and I have no caregivers. I am ok with
that because as long as I go every other week, and I am asymptomatic, I feel no pain.