Massive spleen and dangerous low platelet count

My spleen was HUGE. I was in pain and couldn't eat much. A drug called Vonjo reduced the size of my spleen to the point that it is no longer an issue.

Such good news! Hope is alive. Thank you for sharing this.

@tampakaren, how is it going with the clinical trial? Thank you for taking part to advance science.

Thanks Colleen,
I started the trial Aug 9th and so far it’s been manageable. I’m taking 400mg of Fedratinib daily and 500 mg Hydroxyurea. Some weeks Hydroxyurea gets increased to 1,000 based on labs. Last week WBC were 189,000 so increased to bring them down. Yesterday labs they were at 129,000. Now back to 500mg. Labs weekly. Sodium was low so had a bag of fluids this morning. Last week 2 units blood so a balancing act. I’m remaining hopeful.

I have a platlet count of 47 and a trace of blood in urine collection.

It has been suggested I might have thrombocytopenia. I am scheduled for a bone marrow test on Wed. Has anyone been thru this?

I am a 68 year old female. My blood work continues to show a platelet count of 47. I am scheduled for a bone marrow test in 2 days. They have mentioned thrombocytopenia. If anyone has been thru this, I would like to know what to expect.

Good morning @bjd0501 There are a number of issues which can interfere with the body’s ability to produce platelets…anything from certain vitamin deficiencies, viral infections, anemia to more serious blood conditions. So, for answers, your doctor wants to get to the heart of the blood manufacturing site which is your bone marrow

Samples are taken of the bone marrow itself, along with an aspiration of peripheral blood. The analysis of these samples provides an in-depth look at the marrow’s overall health and its ability to healthy blood products; In your case, platelets.

The biopsy sounds much worse than it is. I’m not sure where you’re having this done, but some larger hospitals will offer a sedated experience where you’ll be asleep for about 15 minutes, much like a colonoscopy. If this isn’t available, you’ll have a local anesthetic injected into the area.

The samples are taking from an area on your back upper hip bone. If you feel along your back, you’ll notice the two large dimples on either side just above your biscuits. It will be around that area where the sample is extracted.

From my experience with 13 of these, you don’t have to remove your clothing. But you’ll want to wear loose fitting pants; elastic waist band is great.
You’ll be lying on one side or the other and your pants will be pulled down enough to expose that site. A drape will be over you with only the little window area open for the procedure.

The doctor will have you roll a little forward. Don’t worry, the nurses will be guiding you and this all goes fairly quickly. They’ll be talking you through everything. So the more you can relax, the easier this will be. It can feel uncomfortable though it’s more of an intense pressure than pain. When the doctor is finished with the procedure you’ll have a padded bandage placed over to maintain pressure for 24 hours. After a day you can resume taking showers and normal activities. The area might be tender for a couple days or sometimes a couple weeks.
There are many factors to the testing of the samples so it takes a week or so before results are given to your doctor.

Here’s a tutorial from Mayo Clinic that might be helpful. https://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/about/pac-20393117

Are you having this done in the doctor’s office or clinic?

It is scheduled at the hospital for 7:30 a.m.

Best wishes for only good news with your biopsy on Wednesday. As I mentioned, those results will usually take a full week or so to be completed. So I know what an antsy time that is waiting…keep yourself distracted. ☺️ What are some favorite hobbies or activities which bring you joy during the day?