It’s reassuring for you that your numbers haven’t been changing very much since diagnosis. Many blood conditions tend to develop slowly over time so it sounds like you’re having regular blood work. That will allow your doctors to spot and follow any trends in the results.
I know, having a chronic diagnosis with a potential for changes can feel like you’re waiting for the other shoe to drop. But try to always focus forward and enjoy your life, putting the diagnosis on the back burner. If something changes, then your doctor will talk about treatment options.
How often do you have your bloodwork done?

Hi @pixiesusan

My name is Audrey L. I am sorry I have not seen your messages until now. I have had CCUS for over 12 years now. Progression for me has been slow. My Platelets began in the 120-140 range many years ago. My WBCs were in the 3500-4000 range and my ANC from 900-1200. Although there were ups and downs, they were stable for at least 8 years. My bone marrow biopsies did not show evidence of MDS. I was therefore put on a wait, watch& see schedule of care. My labs were repeated every 6 months. My Platelets dropped to the 90-95K range three years ago. My labs were then repeated every three months. They were stable in that range until about six months ago. I had NGS panel in 2018. This showed 2 mutations with very high VAF. (40% range). My mutations are DNMT3A and TET2. A repeat bone marrow biopsy three years ago and again a few months ago, have failed to show progression to MDS. However, repeat NGS showed that I have acquired a third mutation. (CUX-1). The VAF is much lower on this one, but it likely does mean there is some evidence towards progression. My platelets have decreased to the 75-79 K range over the past six months. (We have checked them monthly for 4 months.) My hematologist indicated that should my platelets reach 50K, I would be referred to a Stem Cell Transplant doctor for a consultation.

Platelet counts in the 30K range are quite low. At the very least, you do need to see your hematologist. I would assume she/he will want to check a new bone marrow biopsy, (possibly also cytogenetics, flow cytometry and rapid heme panel) in the near future to help you decide your next steps.

CCUS can be a very confusing and lonely diagnosis. It is like you are always waiting for the next shoe to drop. The fear of the unknown is real. Also, not many people.. including other providers, (like PCPs) really even understand what it is. This means, people with CCUS often have very little support.

I have read a lot over the years about this. I want you to feel reassured to know that Stem Cell Transplants are thought to be CURATIVE. In the meantime, there are other treatments available, if needed… until a transplant becomes a viable option. I have seen several doctors for my CCUS (due to change in my health insurance, retired hematologist, etc..) I also had a second opinion. All of my doctors have been at top cancer institutions. All of them have said the wait, watch and see approach is absolutely the way to go. The treatments can cause patients to become sicker sooner than they would have if they had just let it run its course. It is important you have frequent blood testing and follow ups. At least every three months is standard of care for this.
Once again, I do think at 30K, your platelets likely
need some type of treatment. This will likely be a discussion between you and your hematologist. I hope I may have answered some questions for you. I wish you all the best. Please reach out to me for any further questions, or if you just need a friend to talk this out with. It is important we are there for one another.