What are the alternative treatments for ET?

[Franklyspeaking]

I have just been diagnosed in January with ET and the thought of taking a chemotherapy drug terrifies me. My platelet count is 447 which seems borderline to me and I would prefer to just monitor my numbers but because I am 70yrs old I am told I am greater risk. Are there any alternatives to drugs?

[Charlieapple2018]

If your fairly active and feeling in good health maybe wait and see how your numbers fluctuate. By NHS criteria you’ve hit the age marker for treatment, but your numbers are very much on the borederline and unless you’ve had some other significant event you might not need to consider treatment just yet. Your head Haematologist will have some good advice.

The idea of the chemotherapy drug is much more terrifying that actually taking it and for me has been a miracle drug. I had counts in the 1500-1800 region and other drugs made no dent in it. With only four weeks on Hydroxea and they were in normal range.

[Franklyspeaking in reply to Charlieapple2018]

Thanks. I am in fact extremely active. Am seeing my hematologist this week seeking clarification.

[veganfriend in reply to Charlieapple2018]

I am very concerned about taking the Hydroxea as other than the ET I feel as if nothing is wrong with me. I exercise five times a week and follow a vegan diet but my platelets run between 800 and 1 mil.

So you have had no side effects?

[Mostew in reply to veganfriend]

Good to see your post .

My platelets keep changing . At moment down from 910 to 830 before that730 .

I too don’t want to take Hydroxea. Every time I have appointment I think if it goes up I better had then say to myself ‘I’ll wait’ !!

IM 64 So considered high risk but feel fine .

Are you taking any supplements ?

[Hidden]

Hi, my platelets are 706 and I am 68. I would love mine to be as yours. I just take aspirin and watch and wait. I have bloods every 6monthly and see Heamatoligist every year. How did they diagnosed you with near normal Platelets? I have had ET since diagnosis in 2015. I have heard these chemo drugs can alter your white cells, as I work in a hospital I am not keen to take the risk of lowering my immune response.

[Hidden in reply to Hidden]

My platelets were 450 when diagnosed with ET. That was 2 years ago they are now 940 . My haematologist explained from age 60 due to age related changes the risks of a heart attack,stroke thrombotic episodes increase. I too am nervous but will start on a small dose in six months. I would rather have lower platelets and reduce the risk especially as so many seem to do reasonably well on Hydroxyurea, if l was younger and my platelets much lower l would hold off

[Franklyspeaking in reply to Hidden]

It is my intention to hold off but will be seeing my hematologist this week who seems clear on my taking meds. I have no symptoms whatsoever and I am of the belief that all medication causes a problem somewhere else.

[Franklyspeaking in reply to Hidden]

My preference is to take an aspirin and monitor my numbers. I noted the elevated platelet count after routine bloodwork for my annual physical. My general practitioner had not noticed the elevated number until I asked about them. I try to be proactive about my health .

[Scottishterrier]

HI Franklyspeaking

Please do not be afraid of taking HU the only thing you may feel is nausea but there is a great drug called Domperidone that does the trick usually three a day but it keeps nausea under control i have had ET since 1994 i have been on hu for last 20 years and it is best decsion i made it does not make you lose your hair it is not like the liquid form that makes you constantly sick or lose you hair go for it it may make you tired but the good out weighs the bad things you hear about other drug treatment just go for it.

best Wishes

Scottish Terrier

[Franklyspeaking in reply to Scottishterrier]

Your experience is comforting. Thanks

[Applesnpears]

Technically the term "Chemotherapy" means using chemicals to treat disease. Originally it was used for substances such as arsenic to treat syphillis. In that sense any medicines you take are "chemotherapy".

The term chemotherapy has become associated with cancer treatment where drugs start to be used in the 1960's as an alternative to surgery or radiotherapy.

But there are a wide range different medicines that can fit under the umbrella term "chemotherapy". Some are highly toxic and can have severe side effects. Others, including hydroxyurea are much more benign. Yes it can have side effects but some people have taken hydroxy for years with no significant effects.

Elevated platelet counts become of more concern as you get older. The risk of blood clots increases with age and raised numbers of platelets increases the risk even further. The consequences of clotting events can be extremely serious and life changing.

Hydroxyurea can be very effective at reducing platelets and many people have few side effects.

You need to speak to your haematologist about your concerns. Medication, not chemotherapy.

[Franklyspeaking in reply to Applesnpears]

Thanks for your clarifying response; I recognize you are correct with respect to terminology. I will try to stay focused on facts and not my emotions.

[Aquinas in reply to Applesnpears]

Thank you for your most informative and helpful post. It has put things into perspective.

[mhos61]

Hi Franklyspeaking and welcome to the forum.

This is something you will need to discuss with your haematologist. They should explain the risks and answer any questions you may have. The decision to start treatment however will remain with you. The main objective is to reduce your risk of potential thrombotic events. If your ET was confirmed with the Jak2 or MPL mutation then this, along with your age will automatically put you in the ‘high risk’ group.

I would just like to say that I have taken hydrea for three years with no problems whatsoever. If you decide to start treatment, it is daunting taking that first tablet, but that is more psychological. It gets easier.

[Chel1 in reply to mhos61]

Hello yes I've been on the hu now for 4 weeks the only problem I have is burping and acid in my stomach but that could be the asprin that I dissolve in water so will speak to consultant this week when I go for blood test and tiredness so do stick at it as it far weighs out having strokes and heart attack. I have et +jak2 pos.

[mhos61 in reply to Chel1]

The burping could well be the aspirin. A lot of members take the enteric coated aspirin. I take the one that dissolves in water, so far I have had no problems. Good idea to discuss it with your haematologist this week.

I totally agree with your thoughts on the beneficial effects of hydrea.

[Franklyspeaking]

Thanks for you supportive words.

[JaK2ET]

Probably the only way to discover if a particular treatment, such as Hydroxycarbamide (Hydroxyurea), is suitable and beneficial for you is to try it ... you will be closely monitored by the haematology doctors and nurses ...

Good luck!

[Ebot]

Hi there.

Just to repeat my mantra(!) Hydroxy for MPN patients is ‘chemo’ with a very small ‘C’. Like the overwhelming majority of people who take it I have had absolutely no side effects whatsoever - except my counts have tumbled to within very healthy and normal ranges. The dosages are very small. This is not hair losing, nausea inducing, immunocompromising chemo. After the first few doses, it became as normal as popping my daily aspirin.

As to whether you should start any kind of treatment, well like everything else, that’s a matter of risk assessment. And after a full and frank conversation with your haematologist you will be able to make a decision. It’s wonderful that you feel so well and that you are so active. My guess is that your haematologist will want to do everything they can to keep you that way. And remember, no decision is irreversible. All the best.

[Wyebird]

Hydroxicarbomide is my lifesaver

[Aquinas in reply to Wyebird]

Well put.

[Irishgal12]

I feel the same so scared to take chemo should that ever happen

I hope that there will be a new drug in the future

[ChelseaF]

I feel much better on Hydroxyurea than I did off of it. It causes some sun sensitivity but that’s not a huge issue. There are people who experience a lot of side effects with it but I think the majority adjust to it well.

[hunter5582]

As you have heard from others, many people tolerate hydroxyurea with little or no problems. There are other options for chemotherapy/cytoreduction, but most docs start with HU as it is a standard treatment and less costly than the other options. I happen to be one of those who is HU-intolerant in that I had adverse effects even at sub-therapeutic doses. Having said that, I would never tell someone to not consider HU if in fact they need cytoreduction. The thing to understand is that for most people who do encounter issues with HU, the issues go away when you stop taking the HU. You can always move on and try something else.

The thing to understand is that there are risks and benefits to each of your choices. All chemotherapies come with their own risk/benefit profile. Opting out of chemotherapy and monitoring only has its own risk/benefit profile. Even the aspirin has a risk/benefit profile that is in part age-dependent. You have to weigh your risks and benefits for each choice then make a considered decision about what is best for you and what you are most comfortable with. Your preferences are an important and legitimate part of the decision making process.

The typical top of the normal range for platelets is 450K (varies from lab to lab). The values can vary by as much as 100K from time to time as part of the normal cycle of platelet production. You are correct in thinking that a 447 would be within the normal range, but

an accurate diagnosis would be based on trends and multiple CBCs over time. You would also want to know your status for the driver mutations (JAK2, CALR, MPL) to get to the diagnosis.

Please do take the time to educate yourself about ET and your treatment options. it does not sound like there is a medical emergency at hand and you can take the time to make a considered decision once you understand what all of your options are.

[Aquinas in reply to hunter5582]

An excellent set of points, Hunter, which I have found very helpful. Thank you for your post.

[Threelions]

I’ve taken Interferon and have to say it’s not bad at all. You are at a much higher risk of stroke etc if you don’t get your platelets in check. Don’t assume that chemo is bad just because it’s called chemo, I’m sure you will be fine if you’re advised to take anything 👍

[bigberta17]

Hi Franklyspeaking: I just returned from seeing my third hematologist/oncologist. I was diagnosed in October 2019 as ET/JAK2

but have not had BMB to confirm 100%. My last blood work in January

2020 my platelets were 487. This doctor said we could "wait and see"

how my numbers are in three months. She said if my symptoms are not

bad and manageable, there is no reason to start treatment. I have had

some symptoms but I can manage them and would much rather stay off

the drugs. I was very happy with what she said because one of the

other doctors I saw in October wanted me on the drug when my platelets

hit 500. This new doctor said there is no magic number to determine

when it's time because a lot of it has to do with managing the symptoms

and preventing thrombosis and heart attack. I am 71 and have ET/JAK2

which puts me in a high risk group but I feel if I exercise, eat healthy,

meditate, pray, etc. I would much rather try that first than drugs. It is a personal decision and something you and your doctor will have determine, both trying to get on the same page. I hope this helped

a little and wish you best of luck in your decision. Judi

[Franklyspeaking in reply to bigberta17]

Hi bigberta17,

Your case sounds very similar to mine as I also have not had a BMB and my latest blood work in Feb have my platelets at 447 however have been dealing with just one hematologist. Seems getting an appointment with a hematologist is difficult and I have not attempted to get a second opinion. Have no idea as to JAK2. How is that designation discovered?

[hunter5582 in reply to Franklyspeaking]

Do for sure get a second opinion by a doc who specializes in MPNs. Many docs, even hematologists, do not have much experience nor expertise with MPNs because they are so rare. Here is a list of patient-recommended docs with MPN expertise mpnforum.com/list-hem/ . It is worth the time and trouble to get to one of these doc, even if they are not close.

[Franklyspeaking in reply to hunter5582]

This list is extremely helpful and I will definitely seek a second opinion from a doc who specializes in MPNs. Thanks for this resource.

[Ebot in reply to Franklyspeaking]

Establishing whether or not you have the JAK2 mutation - or indeed any other mutation - (via blood test) is a pretty basic and essential tool for an MPN diagnosis.

It’s strange that you appear not to have been tested for it yet told you have ET and the haematologist is proposing drug intervention. BMB (bone marrow biopsies) are also fairly standard practice to establish a baseline for the disease and get a more detailed picture of what is going on.

It’s probably worth checking with your haematologist as to your JAK2 status - maybe they have done the test and not conveyed the outcome! Otherwise you might want to seek a second opinion from an MPN specialist.

[bigberta17]

Yes it has taken me 5 months to see 3 doctors. But I find it was worth the effort because I keep learning along the way. Don’t know where you live but the Leukemia Society has conferences everywhere & I found one last month in Ft. Lauderdale,Florida not far from where I live. Very helpful information. Also I do a lot of research on MPN website to learn all I can. JAK2 is a mutation that some People with MPN’s have & they find it through blood testing. I wouldn’t be surprised if you already have been tested but you could ask your doctor. If you have any other questions, I’m happy to respond if I can be of help. Judi

[Aneliv9]

Here in Greece,my doctor told me that when i will get 60 years old or my platelet counts are above 800, i will start Anagrelide

[ChillyAsh34]

I am 70 and I am seeing my hemo next week with the same question ,they want to up mine but I am not happy to do that mine are 452