ET and treatment choices

[boltfromtheblue26]

I was diagnosed with ET in 2004. I am on Aspirin.

I recently turned 60. My platelets are 530.

My consultant has recommended that I start low dose Hydroxycarbamide 3 days per week.

I am so confused and don’t know what to do.

[Mostew]

Glad you found this forum. Hopefully by reading what others say ,combined with expressing your consurns to consultant things will feel clearer

Have your platelets been steadily rising ?

Some professionals don't consider starting medication until over 600.

If you are feeling well and Symptom free you may prefer not to start treatment yet.

This is your choice .

It's important to be listened to. If you don't feel you are being, ask to change consultant s .

Combined with my local hospital Heamatoligosts, I see an MPN specialist once a year. Your Gp can request this.

Do you follow a mainly anti inflammatory diet?

No question is to small , always someone here to discuss with and let out frustrations!!!

Beat wishes to you

Carolyn

[hall2]

Whenyou turn60 is when you move up into what is seen as being higher risk. There are other treatments. Pegasys is one and I inject myself with 90mcg every three weeks and it’s working well. I’m nearly 67. Look at all options and discuss with your dr. There’s lots of useful information on here.

[Ebot]

60 really is just a number in this case. In fact nowadays that number is considered by many haematologists to be 65. But it’s still only the starting point for a conversation about treatment - not a hard and fast rule.

Each case needs to be weighed up individually. Your platelet numbers are pretty low and if they are stable and you have no other compromising health issues then there is probably no reason to rush into treatment. Certainly age is a key risk factor for MPN patients but it’s only one factor under consideration. Definitely go prepared for a chat and ask lots of ‘why’ questions when you next see your haem.

[Hopetohelp]

At 60 we change overnight😂. We are all different but they use 60 as a marker to move to higher risk but this obviously is a very individual thing. If your platelets are rising there are different options to look into. Hydroxycarbamide will be first line offered in uk. Pegasys is another option but in uk you may need to be firm in saying that it is your choice if you should decide on Pegasys and they should give it to you. If platelets are steady, some haematologists do the watch and wait technique. Good luck

[hunter5582]

Hello and welcome to the forum. This is a great place to be.

While many hematologists still use 60 as the high risk indicator with ET, some have switched to 65. We all age differently. Some docs no longer use age as an absolute parameter, looking at each patient's profile individually. My MPN Specialist said "65 is the new 35." The age-based parameter to determine high-risk ET is statistically based and applies to large numbers of patients, but perhaps not to a specific individual. That is something you will need to decide for yourself in consultation with a MPN Specialist.

Your platelet levels are relatively low. Some MPN Specialists use 600 as the target for cytoreduction when treatment is indicated. silvermpncenter.weill.corne... In the absence of incidents of thrombosis and other symptoms, you will have to determine if your level of risk merits cytoreduction at this point.

If you decide to opt for cytoreduction, as others indicate, there are two primary choices available, hydroxycarbamide (hydroxyurea) and Pegasys (PEGylated Interferon). These two medications have a different risk/benefit profiles and work in different ways. Hydroxy is a chemotherapy (cytotoxin) that works by interfering with DNA activity in hematopoietic stem cells and other cells in your body. PEG is an immune modulating therapy that acts as an antiproliferative agent. Both will inhibit the production of blood cells. Note that we all respond differently to these medications. Some tolerate and benefit from one and not the other.

The cost of the medications is very different. Hydroxy = $25.00/month 0r less. PEG = $4,200/month. This does impact how the formulary works in accessing medications. When the patient chooses PEG, it is often necessary to advocate for it.

The decision to continue aspirin & monitor, or to start cytoreduction with either hydroxy or PEG is yours to make. You can work most effectively with your care team if you know all of your options and the advantages and disadvantages of each. There is a very good article by Dr. Claire Harrison about this choice. mpnjournal.org/how-i-treat-...

Another article by Dr. Jerry Spivak is also worth reading. legeforeningen.no/contentas...

It is a good idea to do a comparison between the medication options, looking at risk/benefit. This will help you to make a decision. Here is one place to start. Best to use multiple sources to get well rounded information.

Hydroxy drugs.com/monograph/hydroxy...

PEG drugs.com/pro/pegasys.html

Wishing you all the best as you move forward.

[boltfromtheblue26 in reply to hunter5582]

Thank you so much for your reply. Much appreciated.

I do have the added complications of hypertension, high cholesterol and diabetes.

I have only been with my current doctor for a few months.

Such a lot to research and consider.

[hunter5582 in reply to boltfromtheblue26]

Given your medical history, cytoreduction is indicated. Most docs will recommend it. The best thing to do would be to seek a second opinion about your treatment options from a MPN Specialist. While hxroxy and PEG are two first-line options, there are more choices, including drugs in clinical trials. It is best to understand all of the options before making a choice. Here is a list of MPn expert docs. mpnforum.com/list-hem./

[boltfromtheblue26 in reply to hunter5582]

Thank you. My consultant is on the list.

[Hidden]

All different stories I was put on hydroxy 12 years ago in my mid 50s with platelets only abt 500 wish I had known what I do now mmmm

[boltfromtheblue26 in reply to Hidden]

Thank you. What would you do differently?

[Hidden in reply to boltfromtheblue26]

In my case I would have used Aspirin alone like you have been doing until I really needed other treatment

[Hidden]

Ps Hunter gives really good advice If it is safe for you to do so, I would try and use natural remedies for a while, until no other choices I done really well on hydroxyurea for years, on interferon now, having lots of issues And getting ignored, no support lol so also hope you getting good professional help, do your research Best Wishes boltfromtheblue

[Plate]

Hello,

I was diagnosed with jak2 and ET about 9 weeks ago. My platelets were 550. I stated hydroxyurea 500 mg/day and 81mg aspirin. I had new labs done a month later. My platelets were normal at 350. I now take HU every other day plus the aspirin. I am 71.

Ask your hematologist about HU versus hydroycarbamide and why he/she is choosing this drug over HU. Ask a lot of questions and do research to make you a more informed patient about your disease. I was terrified in the beginning to, but this forum has been so helpful.

Try not to worry my friend. Worrying solves nothing.

[boltfromtheblue26 in reply to Plate]

Thank you so much for taking the time to reply.

I may well be wrong, but I thought hydroxycarbamide and hydroxyurea were the same drug?

[Otterfield in reply to boltfromtheblue26]

Yes they are the same. When I was first on it, it was called Hydroxyurea. A few years later, the name on the box changed to Hydroxycarbamide.

[Plate in reply to Otterfield]

Thank you for the information!

[Auggie17]

I was diagnosed at 65 and had a bone marrow biopsy to confirm that I was Jak2 positive. My platelets were 680 but because of age and all the rest I was put on Hydroxyurea 500 mg daily. I see an MPN Specialist once per year and they say I am doing great! My blood is tested every 3 months by my local hematologist to stay on top of it.

Agree with everyone that says each person should be assessed individually. I just read that research is still being done on Ruxolitinib for ET and my doctor offered it to me because I complained about all of my bruises but I decided to wait for awhile to see if I really want to switch. Hang in there and don’t worry, you are going to be ok! Find an MPN Specialist to get a second opinion. Good luck!