Recent diagnosis of MPN, all three counts elevated.
RBC count was 1.2 million, but lowered by phlebotomy to 922,000.
I have started on Hydroxyurea.
Are there any resources that provide information on the rate I could expect my RBC count to go down?
100K/month, 50K/month, etc.
Thanks!
hsdale3
do you mean RBC or platelets
RBC's, but info on WBC's and platelets would also be helpful.
Thank you!
Howard
Ainslie,
Thank you for getting back to me. You were correct, it was my platelets that were over 1 million (1.112M), not the RBC. My RBC count is 8.6M, and WBC count is 16.6K. Also, I am JAK2 + (Detected c.1849G>T (p.V617F) Tier 1), MPL and CALR not detected.
So, any idea if I am looking at months, or years, in getting things back into the normal range (or close to normal range)?
I realize there are all kinds of variables involved, but thinking about averages...
Thank you,
Howard
Welcome to the forum. Glad you found your way here. This is a great place to find information and support.
Suggest that you review each of your treatment options and what each is for with your MPN care team. Phlebotomy is used to control the erythrocytosis (reduce RBCs). This is usually measured with HCT or HGB. The goal is HCT < 45% (males) of HCT < 42/43% (females). Uncontrolled erythrocytosis is what creates the risk of thrombosis with PV. The intent of therapeutic phlebotomy is to induce iron deficiency. Your body cannot make RBCs without iron. There is a balancing act involved in depleting your body of iron without making you anemic. It is important to note that iron deficiency without anemia can also have adverse effects. This is something to review with your MPN care team.
Hydroxyurea is a chemotherapy agent, an antimetabolite that is cytoreductive. It reduces all three types of blood cells. HU interferes with DNA activity in hematopoietic stem cells and other cells in your body. It is effective as a cytoreductive agent and is fairly rapid acting. Your MPN care team should have advised you of some specific adverse effects to be mindful of as well as providing handling instructions for the HU. Here is some information that you may find useful.
drugs.com/monograph/hydroxy...
mayoclinic.org/drugs-supple....
drugs.com/https://www.oralc...
ethrombo.blogspot.com/2017/...
It is important to be clear about the therapeutic target for the thrombocytosis. This needs to be based on your risk profile. While there is not a linear relationship between platelet level and thrombosis risk, there is an elevated risk of hemorrhage as platelet levels are higher. Bearing that in mind, it is important to set an individualized goal for platelets based on your MPN profile.
It is important to consult with a MPN Specialist as many doctors, including hematologists, rarely deal with MPNs, Here are two lists of MPN-expert providers.
pvreporter.com/mpn-speciali...
Wishing you all the best on your MPN journey.
Hunter,
Thank you for your reply.
What I am curious about is: approximately, what rate could I expect to see blood count numbers dropping?
100,000/month, 50,000/month, etc.
i.e. - Will it take 5 years to get from 1.2m back to normal, 2.5 years, 1 year, etc....
Thank you,
Howard
It helps to understand what each type of blood cell count reference range looks like, Platelets will usually look something like [150 - 450 10^3/uL]. RBCs will look something like [3.93 - 6.08 10^6/uL]. The erythrocyte measure used for treatment is usually hematocrit (HCT) or hemoglobin (HGB). WBCs reflect leukocytosis and have a reference range that looks something like [3.98 - 10.01 10^3/uL]. It is often the individual type of WBC that is significant (neutrophils, lymphocytes, etc.)
We all respond differently to the medications used to treat MPNs. Response is also dose-dependent. You may have treatment goals for each type of blood cell that is elevated.
The suggested treatment goal for platelets can vary by provider. Some doctors will use "normal" platelet levels as the goal (PLT < 450 or 400). Some will use another number like 500 or 600. There is emerging thought that it may be the delta (degree of change) that should be the target. It is important to discuss your goal with a MPN Specialist. This would include understanding and agreeing with the rationale for the goal.
Discussing the timeframe to reach your goal is also important. Many can reach target within a year on some medications; however, it may take higher doses. Higher doses result in a higher probability of adverse effects. The risk of adverse effects must be justified by the intended benefits of the medication. This is where shared decision making comes into play. You are the only one who decide on what your treatment goals will be and what your risk tolerance is. This is an informed discussion to have with a MPN Specialist.
You have already dropped your PLT by about 300K. That is good progress. You should also see your erythrocytosis decreasing, but it may be at a different rate. Likewise with the leukocytosis if that is one of your treatment goals.
The MPN Voice site has some excellent resources that are a good starting point to learn more. mpnvoice.org.uk/ There some excellent presentations on this site. mpninfo.org/conferences/202...
All the best.
Hunter
its a bit confusing ,you says he already dropped platelets by 300 by but hsdale says its RBC, I cant imagine how it can be reds at those number though
I am thinking the 1.2 million/922,000 numbers are a reference to PLT not RBC. That is what makes the most sense.
Me too but I asked that and he replied it’s RBC?
The values you quote look more like a platelet count rather than RBC! Which MPN were you diagnosed with?
In answer to your actual question.
I endorse Hunters response- We all respond differently to medication. There really is no way of knowing how you will respond, but you will have a better idea at your next clinic appointment. Your response will be monitored closely by your haematologist, and the hydrea dose will be titrated according to your needs.
I am on hydrea and responded really quickly to a platelet reduction; within weeks I was within normal parameters, and my hydrea dose was decreased, but I also started out with lower numbers than yourself.
The short answer is there is no way to really tell. Every person repsonds differently and given the whims of your body they may even go up. Sorry, but trying to predict it is nearly impossible. I have seen large swings in my blood levels for no real apparent reason. hang in there and stay the course.
Approved or Trials of RBC lowering drugs?
Stable hb and hct decreased
Not so good news - after 11 months of Besremi, WBC, RBC, Hemoglobin, and HCT were all below normal
FALLING BLOOD COUNTS
