Hi @pixiesusan. Here’s how to make sure you can respond directly to a member’s comment. ☺️
In this case, you wanted to respond to @audreyl23 and her lovely response to you.
Right under her reply is a little oval ‘button’ that says Reply. If you click there, it will open up a little blue box where you can type your reply. It will have the notification right on top to Audrey, in your reply, that she has a message. ☺️

Another way, if you see a comment or a member where you’d like to reply and make sure they get a notification, type in their @name as it was written in their comment. Always put the @ sign in front of the name. The official user name for all of us should include that @ sign..like mine is @loribmt

I’m so happy you joined Connect. I know you’re having a difficult time finding other people who have CCUS and it really can help to not feel so alone when there are others who share the same diagnosis. We all need a lifeline sometimes!
In no way should you admonish yourself for not understanding your diagnosis. You mentioned even your PC is clueless. That’s because this out of the scope of your primary doctor and the reason that having a leukemia specialist is an important part of your health team to monitor your CCUS.
Dana Farber is a top cancer institute and from what you’ve mentioned of your doctor there, I don’t think you need to have any misgivings about her credentials or expertise. But if you don’t feel as though you are being seeing frequently enough then you need to discuss that with your doctor.
You have legitimate questions and would like some clarification on the potential for your disease to progress. You’d like to know what to expect for treatment options if things do change. You’d like to better understand what caused this disease and how this is impacting your life.

With my leukemia diagnosis and subsequent bone marrow transplant, believe me, I had no clue! That was never on my radar! My husband and I asked a ton of questions and not one time, did any of my doctors balk at having to take time to explain the details of what was taking place. We had a little notebook with questions so we could go right down the list without wasting time. Armed with extensive knowledge I learned about my disease and the transplant, I went from being a bystander to an integral part of my own health team and now I help others.

So I absolutely understand you feel as though you’re sitting on the sidelines watching what’s ’happening to you’ when you want to be an integral part of your team! It’s ok to be that person! We have to be our own advocates for health.
For your peace of mind, I encourage you to check in with your doctor soon instead of waiting until next year’s appointment. What do you think? ☺️

Hi @loribmt and @pixiesusan. First, thank you, Lori, for being willing to share your story and for serving as support to those who have blood cancer or their precursors. Having someone who has gotten so sick (then received successful transplantation) as a resource and patient advocate is invaluable. 🙂

@pixiesusan I am so sorry for what you are going through. I agree with @loribmt. Please do not admonish yourself for not understanding what is happening with your body. ITP is an autoimmune cause of low platelets. I assume this is why you may have fallen through the cracks early on…. When were you formally diagnosed with CCUS? When was your bone marrow biopsy done that confirmed CCUS? Have you had any others since then? I have done a lot of reading over my ten plus year course with CCUS. I also happen to be a nurse. So it is easier for me to read and understand what is happening. However, this can be both a blessing and a curse. I also tend to worry… it’s hard not to… when we know CCUS is a precursor to MDS or AML .
Having a standard of care that is to simply follow blood work closely without early treatment is somehow counterintuitive. I have been to several specialists over the span of my illness. (This is due to change in insurance, MD retiring, another changing to academia.) I have also had a second opinion. I have received care from both BI/Lahey Health and Dana Farber, where I am now. I’ve had a second opinion at Sloan Kettering in NY. These are all top institutions. They all have the same thoughts about treating only for symptomatic patients or those whose numbers are declining. This is because the treatment can make patients sicker sooner than if they had just taken a wait and see approach.

I am concerned about your bone pain and declining platelet counts. As a note of reference, normal platelet counts should be in the range of 150k-450K. Mild “thrombocytopenia” or (low platelets) is 101K-140K; Moderate thrombocytopenia is between 51K and 100K and severe thrombocytopenia is below 51K. (Cleveland Clinic 2022). Your platelet counts have been severely low for a long time, thus the easy bruising. It is imperative you see your hematologist sooner than later, especially since you are now also having additional symptoms. (Bone pain and severe exhaustion.)

You mentioned not having any other blood work abnormalities. In CCUS, there are many variations in the course of the disease. It seems no two patients are exactly the same. You can have changes in platelets, white blood counts and/or red blood cell counts. The standard of care for treatment is based on the IPSS or International Prognostic Scoring System. This uses three prognostic indicators to predict the course of a patient’s disease.

You mentioned not knowing what VAF and NGS is. VAF is Variant Allelle Frequency. This refers to mutations and its definition is the “frequency with which a variant is detected in the specimen.” My understanding of this is that the higher the VAF, the higher the risk the particular mutation is of contributing to progression of the disease. NGS (next generation sequencing) is a blood test that is often used to “determine the mutation status of recurrently mutated genes that play an important role in the diagnosis, prognosis and clinical management of blood cancers. It is also used in CCUS for timely and accurate diagnosis.” Dana Farber developed a rapid heme panel. I am unsure of how or even if this is different from NGS. But the RHP is defined as “a high-tech genetic test that provides an unprecedented amount of critical information to aid in the choice of treatment in a matter of days.”

From what you have shared, I would encourage you to reach out to your hematologist at Dana Farber. I would ask her to repeat your bone marrow biopsy and also to order a rapid heme panel. This test may require a call to your insurance company to ensure coverage, as it can be expensive.

If you should have any further questions, please reach out to me at any time. I hope that I have helped in some small way. I will keep you in thought and prayer. It is my hope you will receive timely and effective treatment in the very near future.

PixieSusan, I like you have low platelets. After bone marrow biopsy I was diagnosed with low risk MDS. I am on watch and wait as well . I see the Doctor mostly every 3 months but because I'm in the 30'000's now she wants to see me in 2 months. My platelets are at 35,000. I was told at 30,000 I have to start treatment. I know there is Promacta and NPlates for those who have low platelets. So there is a treatment. I have a tet 2 mutation. Watch and wait can leave you with a feeling of helplessness. I am on a few MDS support groups but there is very few that has platelets only affected. I do at times have bone pain and as you I can only take Tylenol. I don't think my doctor feels the bone pain is MDS. I don't have much bruising just petechia on my lower legs and feet. I really don't have any answers for you because I have no none for myself but I do get it. I try to live my life and not let it affect me but in the back of my mind it is there. Hope you can find a good support group soon.