Has anyone here bothered to question if taking chemotherapy for the rest of your life for an "uncurbable" disorder makes any sense?
I am sure everyone else has gotten the statement
"Well, if you don't take chemo you have a risk of mutation into something more severe, and if you don't you also have risk of mutation into something more severe.."
So let me ask you? Does taking a MUTAGEN, the class of drug chemotherapy is, every day for the rest of your life sound like a higher probability of developing various other forms of aggressive cancer and breakdown of DNA?
Anyone thought that the treatment for ET is completely cruel and illogical?
I mean, I wish their were more free thinkers, but people just seem to accept the first thing their doctor tells them, as they are trained to accept authority and fear is a primary driver of decisions when someone is telling you that you have "ET" and that it could develop into something that takes your life much much sooner.
CHEMO IS A MASK, it doesn't solve the root of the problem.. so what the hell is the point if your quality of life is going to diminish taking these drugs and especially if you are likely to mutate into something more aggressive..
Surely their is another way, I am not the crazy one here
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The purpose of medication for ET is to control platelet levels, thereby reducing the risk of a blood clot. In any case, treatment is not compulsory; you could ask your haematologist to prescribe Anagrelide or Interferon if you are not happy to take Hydroxycarbamide. If you would like more information about treatment options the MPN Voice website is excellent.
As Otterfield notes Cytoreductive therapy with hydroxy only addresses the risk of thrombotic events. Patients are categorised based on thrombotic risk, which suggests you’re ‘high risk’ or you have severe symptoms. It does not control disease progression.
My haematologist clearly explained why she was suggesting hydroxy., I was considered ‘high risk.’ There was never any suggestion it was to prevent ET mutating into more severe disease, it was always about reducing the risk of thrombotic events.
Nobody can force you to take hydroxy, it’s a personal choice. You have to weigh up the risk and decide what’s best for you.
There are other treatments, such as Anagralide or Pegasys. Pegasys has had some great results, especially when started in early disease, controlling myloproliferation and offering good haematological and molecular response.
You sound assertive, so maybe ask for a second opinion if you’re not happy.
Actually you've made a point here. While I think HU has its eligibility in some cases and under certains circumstances, it shouldn't be generally considered as a first line drug in my opinion. I am not a doctor - at least not for humans - but like you I have a feeling that there are drugs out there which are qualified to halt or delay progression for some people. So I don't get why these drugs aren't considered as a first line treatment, especially for younger people.
Probably cost plays a role and some kind of "tradition". HU is a well known drug, no uncertainties, which makes it easy to prescribe. And for some people it works really good. But to be honest, when I first came across HU and found out how long it is around I was quiet shocked that there shouldn't be many other options than a drug which is literally older than 100 years... old doesn't mean bad, though.
These days Hydroxycarbamide isn't usually offered as a first line of treatment to ET patients. Depending on risk/platelet levels, they would often just be on Aspirin. Pegasys would be the next choice. Hydroxycarbamide is generally offered when patients reach 60. So you are right, but what you suggest is already being done.
Otterfield, where are you from? I've read a lot about young people, especially in the US who have a hard time getting Pegasys as their insurance wouldn't want to cover anything else than HU. Also many have trouble to find a doctor who is ready to prescribe Interferon rather than HU...
I only have knowledge of what happens in the UK, where most young people are now prescribed aspirin only. I wonder if that decision results from a trial that was running about twenty years ago, comparing Aspirin only, Aspirin + Anagrelide and Aspirin +Hydroxycarbamide. I was on the trial and was put on Anagrelide. The trial was stopped early, because it was shown that Anagrelide was less effective at preventing clots than Hydroxycarbamide. Perhaps Aspirin "won" for young people in the end. I didn't know that getting Pegasys was an issue in the US, that must be frustrating.
I'm not from the US, but as I'm newly diagnosed and searching for answers desperatly, I came across a lot of young folks who actually don't have a chance to get Interferon treatment.
I was told I'm JAK2+ with an allele burden of 6,8%. I was referred to a specialist, which I'm going to see tomorrow. So I don't have a clear answer by now. I try to keep pn moving, although it's really hard. Crying a lot though.
no point in crying . Talk to a councillor . ET doesn’t go away. I’ve had it for over ten years . I just live life to the full and take the Hydroxy. Normally I don’t even think about the illness. Just try and get in with life and not worry . Yes I have a few problems but it’s not stopping me do what I want . Lots of people probably have ET and don’t even know about it .
You are correct about the difficulty accessing PEG-IFN in the USA. There are no drugs that are FDA approved for the treatment of ET in the USA. All meds to treat ET are used off-label. (Ruxolitinib is only FDA approved for PV). HU costs about $70/month. PEG-IFN and Ruxolitininb start at about $4000/month. Insurance formularies always prefer cheaper drugs. Getting HU approved is very easy for the docs. It can be a challenge to get other meds approved, but it can be done with many insurance formularies. The good news for all of us in the USA is that Besremi is nearing approval for PV. It is in clinical trials for ET. Having a superior FDA approved med for both PV and ET would be a huge step forward for treating MPNs.
If you are asking about Besremi - it is ropegylated interferon. It is a new longer acting form of interferon. Besremi is much easier to tolerate/fewer adverse effects. It does control hematopoiesis and in addition offers the opportunity for hematologic and molecular remission. Besremi appears to more selectively target the mutated hemopoietic stem cells. It can reduce the JAK2 mutant allele burden, sometimes so low that it cannot be detected. There are clinical trial underway looking at how long people can sustain remission when they discontinue the Besremi.
Besremi is also nearing FDA approval in the USA. It is a really big step forward and will be the second drug FDA approved for PV. It is in clinical trials for ET too. It is already approved in Europe. It is, of course, expensive. Anticipate challenges accessing it in many healthcare systems.
That was my tx plan for the better part of 30 years, until the ET progressed to PV. It is a good plan when you are not experiencing significant thrombosis, microvascular evens or hemorrhage. Hope you can continue on that plan. The good news is that tratment options are improving should you need meds.
We go to Seattle Cancer Care Alliance. They have quite a few MPN specialists. If you go to their website and look up doctors you can read all the bios. There are quite a few to choose from!
You make a good point. I was diagnosed with ET Jak 2 in 2008 at age 52. My doctor immediately put me on hydroxyurea, even though I was young, with no other risk factors. My platelets were less than 600. I didn’t question it at the time. Now I am post ET MF. I found this site only 2 years ago and I found out that most people don’t go on the strong stuff until they turn 60. I definitely feel that the chemo pills affected my quality of life.
Do you have any other suggestions for treatment? I have been on aspirin for years but my platelets keep increasing and are now over a million. I’m 35 and have been experiencing symptoms along with superficial clots in my leg. Not to mention they increased the aspirin to 325mg. Things worsened when I got Covid too they had to r/o a PE because I was coughing so much months after I had it and my platelets were just too high. That’s when they decided to put me on Hydrea. You have to weight the pros and cons. I’d rather decrease my platelet count and give myself peace of mind for now than deal with the constant stress of whether I’m going to experience a thrombotic event at any moment. I understand there are going to be risks that will lead to other cancers and diseases but unfortunately there are less than a handful of options.
No, I believe you are doing the right thing. Your platelets are out of control and you are high risk for thrombotic events. Have you seen an mpn specialist?
Yes, fortunately he is. I wasn’t aware until I jointed this group that some hematologist are not familiar much with MPN specialist. I looked into it noticed my doctor had specialized in this area. He’s also an oncologist and specializes in internal medicine. He told me for years he didn’t want to put me on this medicine and wasn’t necessarily, but after these past two visit after my chronic shortness of breath from Covid and suspecting a PE and such high count that it was time to be put on it. The tests were normal but I didn’t feel well at all. Constant throbbing in joints and legs and shortness of breath. It’s been horrible
As others have said, Pegasys would be the best choice of treatment for you, especially because you’re so young.
It may well be that your haematologist wants to get your counts down quickly to address your current issues. Hydrea would be superior if that was the case - but in someone so young hopefully, it’s for short term use only with open discussion to better treatment.
I’m sorry things have been so horrible for you, especially at such a young age. I hope you will get things worked out so you can reduce your symptoms and start feeling better. You got some good advice on here but you and your doctor are the ultimate decision makers. Good luck to you and keep us posted.
As you are 35 years old, I agree with the other suggestions that you try Pegasys. It should bring your platelets down, and given you are so young it would be better than being on Hydrea for a long time. All the best.
Hi. It is good that you think with thé doctor. I take Hydrea since 2014. 16 pills per week.
At thé last consultation my doctor emphasized that the sun is really dangerous in combination with Hydrea.
I also have to inject myself two times per month with Humira. Also dangerous to creatie skin cancer. This week I was really afraid of all this information. You take pills for one disease and could result in skin cancer.
Yes its just beautiful here at the moment. Just sitting on my deck with coffee after a hard day at work. Sun shining down!! It does warm your heart and makes you feel so good.
You should seek out a dermatologist for the psoriasis and see if a biologic will work for you. There isn’t anything wrong with sun exposure but you should always wear SPF to prevent sun damage.
I have been under a dermatologist for years . Basically treated under narrow band. Works like the sun. Standing under lamps. Increasing time/ minutes as you go along. Works very well but off course costs money each time you go. I don't usually bother with sun screen, maybe around neck area, never put face/head in sun. I do use a steroid cream but don't like continuly using it.
That’s good you are seeing a dermatologist. It’s great you are improving with phototherapy. Yeah steroid creams have potential to thin the skin with long term use. Usually it’s 2 weeks on with one week break repeat prn. We never use phototherapy as a long term treatment as UV light can lead to skin cancer. Our patients usually have a couple sessions a week for a few months. Most of our patients get on biologics such as Humira, cosentyx, otezla, dupixent. We see very significant improvement with these medications.
Thanks, I have heard of Humira, one of my patients at work was on it. My psoriasis isn't too bad. Not like my mum had it! I have it just on my trunk. I thinking once I leave work soonish it all might settle down.
From what I’m reading pegasys is less tolerable than Hydrea. I was also reading that it is questionable about the Hydrea leading to leukemia since MPN diseases in itself potentially lead to acute leukemia. Being on Hydrea you need to make sure you are always wearing sun screens. At least SPF 30 or more. I would advise the highest. I work in dermatology both in our histology laboratory and clinic. The Hydrea makes you very sensitive to the sun so you are prone to Basal Cell Carcinoma and Squamous Cell Carcinoma. These are not genetic forms of skin cancers although people with lighter features are at higher risks for these types of skin cancers. The more cumulative sun damage you have the higher the risk, which is why you are at higher risk if you start the medication at a younger age and don’t protect yourself from the sun. Many people do not take skincare seriously. You should see a dermatology annually for full skin exams especially if you have a mother, father or sibling with history of melanoma. It is imperative to do this especially after the age of 30. Some people typically start developing actinic damage after their 30s which develop into squamous cells. I’ve even seen people in their mid 20s with basal cells. Basal cells can disguise themselves as flesh colored papules. Actinic keratoses (precancerous lesions) and squamous cells are more rough and scaly. Melanomas don’t always have to look like classic textbook. I’ve seen tiny ones that appear like regular moles. So, being in dermatology I’ve been more conscientious about my skin but I guess I have to up the SPF and wear more hats.
I have had nearly 30 good years , become a grandfather and toured most of Europe with my caravan . Haematologists are not some pantomime villains , they believe they are helping . If you allow the platelets to build up the chance of stroke and embolism goes up, but its a free world I wish you luck,
I agree. Sometimes I think patients get frustrated but it would be incredibly rare for a doctor to knowingly prescribe something harmful. I have had one haematologist who made a mistake in my treatment (failed to suspect and test for MF), but it certainly wasn't malicious. Apart from that experience, I have always been confident that my medical team are conscientious and genuinely want the best for me.
I agree with your statement about this. Very strongly. I was actually just discussing this with someone. It’s like they don’t want to see the big picture or analyze the entire situation. It’s too difficult or they are too lazy. They aren’t free thinkers at all.
I was diagnosed with ET 12 months ago. My platlets were high (1,300) My Hematologist prescribed Hydroxycarbamide immediately. When it all sunk in after I got home I decided I wasn't going to take it. They called me a few days later to see how I was getting on and when I told them I hadn't started the meds they got me in for another consultation with my Hematologist. Firstly I was pretty appalled by the lackadaisical attitude of my H. I didn't even realize I had a blood cancer until I got home and read the booklet she had given me. When I expressed alarm at the diagnosis her response was....."If you're going to get a blood cancer, this is the one to get and this wasn't even considered a cancer until about 10 years ago". I had been seeing my GP for about 2 years with unexplained symptoms which had all been just left to age related etc (I'm 68) It wasn't until I was preparing for a total Knee replacement that my anesthetist told me to make sure i haunted my GP to look into my blood Platelet levels as they were off the charts. He decided against a general and gave me a spinal tap instead. I followed his advice and 6 months later and many, many tests I got the ET diagnosis. All that to say.....its an absolute minefield getting to even an actual diagnosis. I am a researcher and try to learn all I can and like you believe there is a lot we can do for ourselves. I wasn't really given an alternative treatment and when I asked I was told the side effects are even more debilitating. I tried EAM (Energy alignment treatment) and my platelets came down to NORMAL......170! I haven't had any more EAM sessions because of Covid. and so have been taking the H. to keep the levels at a reasonable level ( 600). I take CBD oil (100%) every day and follow a fairly good diet. I'm still on H. and will be for life.....Ive since found out. but I have not given up and will be pursuing the EAM route as and when I can. I have had several negative reactions to Hydroxy, and don't want to spend the rest of my life on it. Everyone is unique and different things will work for different people. Its up to us individually to find out what works best for us.
I'm sorry it took so long to get a diagnosis. You could ask your haematologist about Pegasys as an alternative, although some people get very bad side effects with it. I was diagnosed before ET was reclassified as a cancer and had some years on Hydroxycarbamide. It's a good, effective drug for many people, but clearly doesn't suit everyone. Although ET has unpleasant symptoms for some, I agree that it's the "best" cancer to have, as you are likely to have a normal lifespan. Best wishes with your treatment.
It is used to control blood counts, and this can reduce the risk of both blood clots and bleeding for people with PV (polycythaemia vera), plus evidence suggests that it reduces the long-term risk of bone marrow scarring or myelofibrosis (MF). For people with ET (essential thrombocythaemia) it reduces and controls platelet counts, reducing the risks of blood clotting, bleeding and developing MF. For people with MF it can reduce the size of the spleen if it is enlarged, and also reduces the risk of blood clots.
Other benefits are that Hydroxycarbamide can reduce the symptom burden for MPN patients, such as fatigue; itching; headaches and other symptoms, these symptoms have a huge impact on quality of life for many people.
Hydroxycarbamide and cancer - Although very rare there is a possibility that Hydroxycarbamide may increase the risk of skin cancer.
There is also a possibility that Hydroxycarbamide may increase the tendency of MPNs to change to a form of leukaemia. This is very uncommon and it has not been proven that this is a result of treatment with Hydroxycarbamide.
There are other medications that are used for the treatment of MPNs, and we would always encourage patients to consider the different options available and to discuss these options with their haematologist before making a decision on which medication to take. Every patient is of course able to decline treatment if they so wish.
Information about other treatment options are available on our website:
There are certainly other options than hydroxyurea for treating ET. Cytoreduction is only indicated for high-risk ET patients. When something more than aspirin is needed, then PEGylated interferon, Ruxolitinib, and anagrelide are all options. The newer form of interferon, Besremi, is available in Europe (soon in the USA) is much easier to tolerate - has fewer side effects. It is the ethical responsibility of the provider to review all of the treatment options you have, including the risk/benefits profile of each choice. Dr. Harrison did an excellent job of outlining this process in her "How I treat ET" article.
You are correct in that HU is a mutagen. It is also a teratogen, carcinogen and potentially leukemogenic if used for more than 10 years. It is a toxic medication that has very real risks. Adverse effects are common. It can also have very real benefits for some people. Some people are able to tolerate it seemingly without any problems. However, not all can. I am one of those who is HU-intolerant. I experienced toxicity even at very low doses.
The underlying issue you are touching on has to do with the ethics of prescribing and how doctors work with patients in regards to informed consent. Meaningful informed consent involves full disclosure of the risks and the benefits of any recommended treatment. It also involves reviewing all treatment options, even those that are more expensive and difficult to access. It also involves discussion of not treating the condition. The better providers always engage the patient in meaningful informed consent. All treatment has risks. Doctors have to make judgements about the relative risks and benefits of each treatment option. The key to this process is that doctors make recommendations. Patients make decisions. To do otherwise is a fundamental violation of the patient's right to informed consent.
You have options and choices in regards to treating ET. HU is certainly not the only choice. IF you feel there are better choices for yourself, you have the right and the responsibility to pursue those choices. I happen to agree, I will never use HU again. Others feel differently. That is the fundamental right each of us has to make informed decisions about our own care. We also have to take responsibility to educate ourselves so we can make good decisions. It is up to each of us to take responsibility for our care. Educated and assertive patients receive higher quality care. Passive patients do not.
I hope everyone receives the quality of care they deserve.
Thank you everyone for the replies and kind gesture you have shown me regardless of my frustration and emotional state, I apologize coming off as a wounded soul with such anger.. I have lost countless family members to the medical system far too soon, which they would have very likely been better off with no treatment and spending the end of their days without pain. We lost money and we lost a loved ones, they took our hard work through the years being our capital, and they took our lifes as well, its hard to look at a system which I feel is broken. Too much focus is on treatment and not enough focus is on cures..
I had personally been on Interferon for multiple years before and that has already taken its toll on me when I had Hep C way back before they had a cure for it, I went through 3 rounds of it and I still don't feel like I am ever the same after those treatments.
I did try one day of HU and couldn't bare how I felt personally speaking, and couldn't imagine the rest of my life under that circumstance..
I am of the belief that genes are like switches, they switch on and off due to environmental exposure, I believe that I can turn this gene back off, so far I have been on a very strict diet, dropped all medications, no aspirin, no metformin, no blood pressure medication no medical intervention and have seen my platelets drop from a rising 600-700-850 to back down to 700.. Now I don't think I am out of the woods yet, I want to continue this path and will keep folk updated here on how that is turning out, I am willing to try any other intervention other than pharmacological.. And so far don't need to get back on the metformin aspirin or blood pressure medication as everything is fine..
I am willing to try pharmacological intervention if it actually makes sense to me such as this fairly new treatment for all forms of cancer called CAR-T therapy
If I am not mistaken I think this therapy is taking immune cells out of the body duplicating them in a lab at large quantities and injecting it back into the body as an attempt to restore a young immune system which has had tremendously positive outcomes for many cancer patients of all types..
However I am not sure if that even would help ET or MF
I'm glad you have posted again. When I read your original post I got the impression that you were very distressed but I wasn't quite sure what kind of response would help you.I wish you well and hope your choices are the right ones for you.
We all understand the frustration. The good news is that options are improving. The newest form of interferon, Besremi (ropegylated interferon) is much easier to tolerate than the old forms of IFN. Besremi more selectively in targets the mutated hematopoietic stem cells and can reduce mutant allele burden. Some people achieve molecular remission. While not a cure, it is the closest thing we have to it at this point. Research continues and there is hope for MPN treatments improving.
Since you are going to to pursue other options, I would note a few things that have helped me with symptom control. For inflammation - turmeric/curcumin. It works better than NSAIDs. There is some literature that indicates Curcumin can induce apoptosis via the JAK-STAT pathway. Occasionally people have reported lowering platelet levels, but I do not think this is reliable. There is some support for the use of N-Acetylcysteine as an anti-inflammatory with MPN patients. I use L-Glutathione as an alternative. I also use SPM Active (a fish oil derivative that concentrates the anti-inflammatory agents). I am using these complimentary health interventions under the direction of an Integrative Medicine doc. I have found that if something is biologically active enough to help you, it can also hurt you. NOTE: most anti-inflammatory agents are also blood thinning.
Hope that helps. All the best on your MPN journey.
So understand what you are saying . Very few people are as open about how they feel as you . Well done .
If we could integrate the wonders of modern meds with 1st using so called complementary BEFORE people were to ill to respond well perhaps people would be stronger emotionally and physically.
One problem . Big drug companies etc may not make as much . ...
I agree with you, I live currently in Texas and if I am not mistaken in order to even qualify for Car-T therapy, you have to go through two failed rounds of chemo first.
I just want to say thanks for everyone for all this conversation. I know I for one will be crossing this road over which medication I should take over the next several years. When these conversations come up it really sheds light on what I should ask, possible choices for meds with side affects (including costs as I live in US), needing to have MPN specialist more important than ever during that time, my responsibilities in this, and what is possible in the upcoming treatments that may be available. It really hones in on what I will be needing to do. Thank you!!
As I have Peripheral Arterial Disease, it seems to make sense that my platelets need reducing to minimise likliehood of a debilitating stroke or death. As I have no ET symptoms , nor HU side effects apart from bad hair: who am I to argue with the medics?
It’s up to you to have treatment. All I know is that my decision is based on fact.Without a drug the platelets will rise. High platelets cause strokes and heart attacks. After suffering a stroke when I was 50 yrs old and lucky to recover.
1/3 die, 1/3 have life changing disability and 1/3 manage to return to life as normal as is my case. Being totally dependant on someone is something I would hate.
1 year later update, I originally made this account for my father who had ET, at the time of the post his platelets were 900, about one year later we have managed to dodge all medications and have followed a protocol of a gluten free low carb diet with a full day fast included every Sunday.. He's also started Nicotinamide Riboside every day as well as NAC daily, we're not really sure which one of these is helping him but his latest blood work came back with his platelets down 400 points! We're astonished and I wanted to keep you guys updated in case this keeps working, for now we're able to manage this condition naturally and as long as we can keep it ranges naturally we will continue to do so to enhance his quality of life and keep him as healthy and alive as long as possible.
I do think we need more blood tests to really confirm what is happening here, if so this is incredibly exciting and potentially paves different options for many people. On the next few blood tests if we continue to see results I will likely post the full protocol of supplementation as well as evidence with name blocked out of course.
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I try to keep pn moving, although it's really hard. Crying a lot though. 
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