What a terrific post of info by roywalton.
I cannot believe the journey i have been on since my transplant April 9th of 2024. In October of 2023 I had never heard of a 5q deletion or a TP53 mutation. I had been a relatively healthy 60-year-old with a shingles occurrence 4 years previously and a mix of colds, basil cell carcinomas and that sort of thing. I did not read medical terms. I had started donating blood in my mid-twenties while going to college. Talked into it by my older brother. In my mid-thirties, I switched to platelets. Twenty-five years later breast cancer. Chemo, different meds and the Lynparza pill.
On my 2nd visit to the City of Hope I was given an option by a person in the department of the genetics team to have the genetics test. My blood had been tested by the Red Cross for over 30 years. Why not I thought. More details would be helpful.
Then the interesting word of MDS was revealed. Caused by? Who knows exactly. Another genetic mutation, the chemo I received, a side effect of Lynparza pill I took? Blasts? 5q deletion? TP53? Before that the Brca2? What in the world. I read about other people having Brca2, but little else about mutations or blood disorders did I read. Besides that, it never occurred to me I would have anything like these mutations or something such as MDS.
To Julie.
Having a medical team which includes the Doctor, test departments and the nursing team is where you will find answers. This is what the hematology units do every single day. Evaluate where you are at. Study all that information you provided and come out with a treatment plan. Many tests will happen if they have not already.
This reminded me of my 25 plus days in the hospital last year in April. After my transplant with my new cells, I honestly wondered why my precious blood could be drawn 4 times per day every day. What would be left? I voiced this to a nurse one day and she let me know the quantity of blood vs what is in my body. I would be ok. My body will handle it.
Allow yourself to fill the fear but know your caring team is there to care for you. I found Lori and so many others on Mayo connect who have walked this journey and helped me see what I would walk through. I looked through that window of "What is going to happen" to find people who knew.
Keep us posted.