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New diagnosis and complications

Hi

I was diagnosed with CML in accelerated these nearly 4 weeks ago. And have been in hospital since! Still here 👋🏻

They started me on Hydroxyurea 500mg 3 times a day for just over a week and the last TDS of taking Hydroxyurea I was started on Nilotinib 300mg BD. Hydroxurea was stopped because neutrophil count went down to 1. 

5 days later my neutrophil could l went down to 0.1so Nilotinib was stopped (this was one week ago). Neutrophils have stayed at 0.1. But my platelets have now plummeted to 16. Waiting on a transfusion as I’m typing this. 

WBC is 0.8

haemoglobin is 77

Neutrophil 0.1

platelets 16

 

are these types of complications normal for new diagnosed? Going into my 4 week in hospital and I’m going crazy (have had infections from the neutrophil being low)

any help/advice would be great 

I had a similar problem early in treatment with Neutrophils dropping to 0.1 (which is dangerously low). What my doctor did was stop all treatment to enable my blood system to recover. It took many months of no drug (Imatinib and Sprycel).

In your case, as you are in early treatment phase, it is very important to get control of your blast count so you are not at risk for blast crisis. Your doctors should be able to guide you through this. What is happening is your normal blood system is very low and your leukemic blood system was very high and is now getting killed off in great numbers. This is leaving a "hole" sort of speak in needed blood that has to be filled in over time. This is actually a normal process. Your body is now experiencing a shortage of blood cells (white blood in this case) and signals are being sent to your bone marrow to make more blood. Unfortunately, your normal blood stem cells are in short supply because they have been crowded out and have to build back up. Your Leukemic stem cells are in high supply and every  time they divide, they get killed off along with daughter cells. It's a battle between new normal blood and new leukemic blood. As you are off drug, both blood systems expand. If left untreated, your leukemic system will again outgrow normal blood. So getting back on drug is key.

Your doctors should "pulse" your treatment - on again/ off again to allow your normal system to build back while keeping your leukemic system in check. This can be done safely as long as blast cells are not taking over. This is very important. Over time, your normal fills in the "hole" and you get to normal while your leukemic system continually degrades.

Two things you can do:

1. Vitamin D is shown to effect blast cell differentiation including leukemic blast cells. You should have your vitamin D level checked. Insist on it as soon as you can. Ask for the results. I predict your vitamin D level is low (i.e. < 30 ng/ml - probably <20 ng/ml). Assuming it is indeed low, you should immediately start taking vitamin D3 supplements to get your vitamin D level up to around 70 ng/ml. This will take months. I took 15,000 IU's every two days and it took me 3 months to get my level up above 50 ng/ml. Your doctor is not likely to know about vitamin D's impact on blast cells. In your situation I would immediately start vitamin D3 addition to make sure I get my D level up (take the supplements with food that has fat - like an avocado, etc.). If your doctors question this - tell them to go research linkage between vitamin D and blast cell differentiation.

2. Consider taking Curcumin (C3 complex) to help slow down your CML cells - it will help augment your TKI when you start back up. I take 2 grams per day - but when I was in myelosuppression crisis, I was taking upwards of 8 grams per day.

Again, if your doctors question all of this - and they might. You know something they don't. Take control of your own health and be guided by what you are learning. It's overwhelming at first, but you will get through this. Read on this forum from others who have tremendous experience having dealt with these issues. And also - what I am suggesting is the result of consultations with experts in the field. These are not "doctors" who practice, but doctors who research and publish. That is the learning this forum will provide to you. Most doctors have no clue.

https://www.medicalnewstoday.com/articles/304797.php

https://www.ncbi.nlm.nih.gov/pubmed/30609023

Thank you for your reply. I had mentioned my Vitamin D the other day and they totally dismissed me? 

Just got a copy of my blood results today and my neutrophil has now gone down to 0 which is quite worrying 

Be very careful. Any sign of a fever - temperature above 99 degrees F (37.2 C) - go to the emergency room. You will need emergency attention. You do not want to take any fever reducer and wait until morning. This is what I was told when my neutrophil count went very low. You should not be taking any CML drug for now.

Thanks for sharing all this informatoin here I hope he gets better soon. My father is almost in the same condition and I am going to tell him about taking D3 and curcumin. After 10 days of no Nilotinib, he is now again on Nilotinib 800. I am quite sure his wbc and plt and noutrophil will go down again. Could you please tell me what is the lowest safe dose of Nilotinib per 24 hours? Each of his pills is 200mg.

During this phase it is on again off again. He should not take ANY nilotinib until his Neutrophil count is above 1.0. He should stop taking nilotinib when his neutrophil count falls below 0.4

He should take whatever dose his doctors are prescribing. On when neutrophils recover and off when they fall. Also - he should have his blood tested weekly for CBC (complete blood count). Avoid any neupogen shots which some doctors prescribe in order to increase neutrophil count. This is old thinking. Neupogen stimulates CML Neupogen is only for absolute emergency.