Thrombocytopenia: Not sure of cause or condition

Posted by zia159 @zia159, Dec 10, 2023

Low plateletcount (100 to 130) from last 13 years. Not exactly know the reason and exact disease is please help for the same

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Welcome to Connect @zia159. Thrombocytopenia is a condition in which you have a low platelet count. There can be a number reasons why a person’s bone marrow may not create enough platelets such as medications, viral infections, anemia, certain vitamin deficiencies, or underlying health conditions.

Here are a few articles for you which help explain Thrombocytopenia and potential causes.
From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/thrombocytopenia/symptoms-causes/syc-20378293

From Healtline.com:
https://www.healthline.com/health/thrombocytopenia#:~:text=When%20your%20skin%20is%20injured%20or%20broken%2C%20your,mild%20to%20severe%2C%20depending%20on%20its%20underlying%20cause.

What does your doctor say about your low platelet level? Have you had other tests run to determine the cause?

REPLY

I have Thrombocytopenia as my usually 333 platelets count before cancer has now stuck at 130 after 2 years. I was worried, as my white cells have never gone back up either. My blood tests that were once a month or longer after active treatment last June, had my white cells staying low. 278 the last count. I finally asked to see a hematologist.
He reviewed my charts and my history. I was given a bone marrow biopsy that may give the whys on my blood. My bloods results coupled with a gene noted in my genetics test that had no relevance, are two items leading to leukemia. The good thing is i do not have it. The sad is I am now in the donor registry. I will add I also carry the Brca2 mutation as do 2 of 4 of my siblings. today I go in for my 2nd blood panel. To be done every 4 months. I have a televisit with the doctor tomorrow to cover the results.

t

REPLY
@katgob

I have Thrombocytopenia as my usually 333 platelets count before cancer has now stuck at 130 after 2 years. I was worried, as my white cells have never gone back up either. My blood tests that were once a month or longer after active treatment last June, had my white cells staying low. 278 the last count. I finally asked to see a hematologist.
He reviewed my charts and my history. I was given a bone marrow biopsy that may give the whys on my blood. My bloods results coupled with a gene noted in my genetics test that had no relevance, are two items leading to leukemia. The good thing is i do not have it. The sad is I am now in the donor registry. I will add I also carry the Brca2 mutation as do 2 of 4 of my siblings. today I go in for my 2nd blood panel. To be done every 4 months. I have a televisit with the doctor tomorrow to cover the results.

t

Jump to this post

Praying for you!

REPLY

I met with my Dr at City of Hope. It is the TP53 that sits at 2%. It is what noted I am heading towards leukemia. This from my bone marrow biopsy, my blood numbers and my chem from my cancer.
He said there are a couple possible matches already. I have another blood test in 2 months. They need to flush out the possible donors

REPLY
@katgob

I met with my Dr at City of Hope. It is the TP53 that sits at 2%. It is what noted I am heading towards leukemia. This from my bone marrow biopsy, my blood numbers and my chem from my cancer.
He said there are a couple possible matches already. I have another blood test in 2 months. They need to flush out the possible donors

Jump to this post

Do your doctors feel there are any potential complications going ahead with a bone marrow transplant considering your breast cancer status? That’s a lot to go through.

REPLY

I completed my breast cancer treatment after taken lynparza twice a day for a year. Finished in June 2023. Herceptin/Perjeta , 18 rounds, till March as I had Her2+ status from my tumor removed.
Still on Letrozole. My genetic test had Brca2 and on other mutation of no significance in August of 2021 . My blood numbers in July and August were going down. Platelets 130 and white 2.9. Other counts good. I was a Platelet donor for 25 years at 330. I knew something was off. The bone marrow biopsy showed TP53 as something combined with the other genetic mutation that leads to leukemia.
I was added to the marrow registery.

REPLY

I asked if I had other choices and he said this procedure is best. Now I am looking at what others have done.

REPLY
@katgob

I asked if I had other choices and he said this procedure is best. Now I am looking at what others have done.

Jump to this post

@katgob, Having a bone marrow transplant (stem cell transplant) is getting a second chance with life. Your defective immune system/bone marrow will be completely replaced with that of your donor via an infusion of cells with the goal of new, healthy bone marrow capable of making healthy blood products again.

From what you’ve said, your genetics testing has been done already so now your doctor has launched the process to match you to a donor. Depending on your nationality, it can be pretty quick or take some time to find a donor who matches your HLA stats.

The rest can move fairly quickly after that.
Some things for you to know about a bone marrow transplant is that most clinics which do the procedure require you and a caregiver to live within 30 minutes of the clinic for about 100 days. Each clinic can have their own protocols and requirements. Mayo-Rochester, where I had my transplant was all out patient. I stayed nearby in a hotel for 4 months with my husband. Other places will have you residing in the hospital for several weeks then convalescing nearby. But you will be required to have a caregiver with you.
As you draw nearer your procedure, there are several of us in the forum who have gone through this. We’re here to share our experiences, answer any questions you have and to offer hope. I’m at the 4.5 year post transplant mark and amazingly healthy! I feel as though nothing ever happened. It’s not an easy journey, especially the first couple of months. But you’ve already gone through treatments for breast cancer so you know you can get through this!!
Let me know if you have any specific questions, ok? Hugs.

REPLY

Lori,

Thank you. My sister lives in western NY, Fredonia, and also carries the BRCA2 mutation. She had her ovaries and fallopian tubes out 2 months after I did. I had mine out the same day as the left breast. The right came off a year ago December 28th. She has been going to Roswell for cancer screening and Cleveland clinic for her rheumatoid arthritis. She now is paying attention to the Mayo clinic.
My doctor did not want me to worry about the next step, but it seems COH does the 2 weeks in the hospital. He covered briefly what you mentioned when he first covered what goes on.
I love these boards and I will keep coming back with my questions. I started my journey sayin "Really God" when I met with the surgeon saying a mastectomy was likely as the tumor was big and my breast was not. She said we will start with chemo to shrink the tumor. It shrunk 1/2 after 13 rounds.
I believe in Drs who are at specialty cancer hospitals. What they lack in warm fuzees, I have found in the NP's.
Questions will come to all of you. For now, they check out the 3 potential matches and I get a blood test again in early February.
I think one thought I have had that many may have is could they be wrong? I only fear what i know nothing about. Trust and willingness have led me so far.
I do not have leukemia yet, so this will possibly prevent it. Your 4.5 years is exciting!

REPLY
Please sign in or register to post a reply.