this may sound silly but can ET turn into leukaemia Or does it turn into MF first? Also can ET be managed well with medication to prevent it turning to Leukaemia?
can Et turn into Leukaemia: this may sound silly... - MPN Voice
can Et turn into Leukaemia
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Green1988
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That does not sound silly at all. Progression of MPNs is a legitimate concern.
A small percentage of people with ET can progress into AML. This usually progresses through MF. There is data from the PV studies that the IFNs (Besremi) demonstrates improved progression free survival. Presumably the same would be true with ET. The IFNs appear to be the only treatment option we have for MPNs that appear to be disease modifying.
It is also worth noting that there is research into whether reducing inflammation can also reduce the risk of progression. There is good evidence from other cancers that reducing inflammation reducing risk of progression. It certainly would make sense and reducing inflammation also helps to control symptoms.
All the best.
Thank you for your wealth of knowledge of our MPN’s
What a good explanation, thanks. Can you reduce the risk of inflammation only by living a healthy live with fa a mediterraan diet? How can you live the best way to prevent this risk?
Lifestyle and diet can make significant improvement the inflammatory environment. There is support for the Med-diet. In addition, there has been research into the use of N-Acetylcysteine and Curcumin supplements to manage inflammation. My own experience with Curcumin has been very positive. It makes a huge difference in managing osteoarthritis/tendonitis (other related inflammatory issues). Curcumin works better than any NSAID I ever took. It makes to difference between being functional or not.
There is very good research into the role of inflammation in MPNs. Here is one very good presentation by one of the leading researchers.
youtube.com/watch?v=FzyoPAG...
Hi Hunter, please excuse my ignorance and just wonder whether you can guide here. I have been suffering a lot lately with bad knee and shoulder pain and have been looking for something I could take which would help but avoiding the NSAID's. I am ET Jak 2 and on 9 hydroxy a week plus one aspirin daily, but lately it is disrupting every day life. I looked at what you have mentioned re Curcumin and thought right I will give that a go as it seemed to be a good recommendation for managing osteoarthritis etc. When I had a look at some of the products available it states "People having any kind of blood disorders like those who depend on blood-thinning medicines or often experience bleeding from the nose, must be careful while consuming curcumin". (I do not have bleeding from the nose by the way)! Is this the case from your experience or is it just being very careful the amount you take. I did mention the pain to the Haemo Consultant last week and initially has suggested getting x rays done, however that in itself does not help relieve the immediate discomfort and it is only something that's recently intensified, thus not knowing whether it is just increased age and arthritis etc, or possibly the Hydroxy causing the probelm. Hope this makes sense.
I am in a pretty similar circumstance with knee, shoulder, foot, and hand pain due to osteoarthritis and tendonitis. I believe that the pro-inflammatory environment caused by the JAK2 mutation exacerbates these kinds of issues even when they are not directly caused by JAK2. I consult with an Integrative medicine doctor who concurs and is the doc who helps with managing systemic inflammation.
You are correct in noting that there is a possible issue with curcumin and other anti-inflammatory agents. To some degree they are all blood-thinning and can potentiate aspirin (increased risk of hemorrhage). Despite this risk, I was in so much pain that my docs tried 800mg Ibuprofen and then Meloxicam when I was also taking low-dose aspirin. Note this warning about drug interactions (typical for NSAIDs) .
Avoid/Use Alternative
aspirin + ibuprofen
avoid aspirin >325 mg/day; otherwise, monitor bleeding s/sx, renal fxn; give ibuprofen dose >400 mg 8h before or at least 2-4h after low-dose aspirin ER: combo may incr. risk of GI ulceration, perforation, bleeding (incl. life-threatening), renal impairment, other adverse effects; ibuprofen may inhibit cardioprotective effect of low-dose aspirin (additive effects; possible competition for platelet binding sites)
online.epocrates.com/intera...
I have experienced mild excessive hemorrhage in the past. Even when only taking aspirin. Worse when adding a NSAID. Worse when my platelet levels are higher. Worse as I approached and passed age 60.
To answer your question directly, I have not experienced excessive hemorrhage when combining aspirin and curcumin. I believe that it is a lower risk option than combining a NSAID with aspirin. In addition, cucumin works better than any NSAID I ever took. So for me, curcumin is easier to tolerate, less risky, and more effective,
Concern about drug-drug and drug-supplement interactions is why I consult with an Integrative Medicine doc. My PCP and other docs simply did not have the expertise to consult regarding the supplements/complementary health interventions. I strongly advise expert consultation regarding the use of any medication or supplement. If something is biologically active enough to help you. it can also hurt you and interact with things. Many physicians lack knowledge about complementary health interventions and are reluctant to recommend them out of understandable caution about things outside of their scope of practice.
If you decide to try curcumin, be sure to choose a bioavailable formulation. Many curcumin supplements are worthless since the body does not readily absorb it. I would also start out a a very low dose to see how you tolerate it. then gradually build up to a therapeutic dose. Do be sure to consult with your care team about anything you decide to try. If possible, I strongly recommend consulting with an Integrative or Functional Medicine doctor. These specialists have the requisite expertise to give sound guidance.
All the best and wishing you relief from arthritis pain.
Wow Hunter thank you so much for all this info. It is so very helpful and will take on board all that you have said. Many thanks.
I too have Jak 2 positive ET. I was on hydroxyurea for the first couple of years but arthritis in my hips and knees particularly was worsening rapidly and beginning to seriously interfere with daily life. I switched to interferon and the arthritis almost completely resolved over the following year or two. I'm still have to be careful about long walks on steeper terrain and strenuous weight lifting but no issues in regular activity.
Hi Oscar Boy,
I was taking Curcuma, 3000mg daily. I reduced my aspirin to 50mg daily instead of 100mg. then adding the curcuma was not a problem. I tried taking the Curcuma far away from my anagrelid. Ie: curcuma first thing in the morning, 1,500mg then my Anagrelide 1,5 hours later. I did't want the curcuma to wipe out my med. Its a very powerful antioxidant. I also took it at night, 1500.
Warning, if you have liver problems, caution is advised when taking curcuma, but there is even more caution advised when taking NASDs!)
I detox my liver regularly to keep it as healthy as possible so there was no problem.
regarding orthopedic treatment, a very good osteopath is worth gold! Same as a really good physiotherapist. Acuupuncture works wonders as well. We need to keep our general inflammation down, then the body tends to take care of its pain. Eat as much organic as possible. Stay away from pork! It's the most inflammatory food anywhere. After eating pork, I have trouble walking up stairs, ankles, knees, hips, stiff fingers in the morning. Avoid wheat, rye, chemicals in the house, detergents, non organic cosmetics and body care. it all has to pass through our liver, although we dont want to think of it, we must. I got rid of almost ALL my allergies and autoimmune problems!
Hi Oscarsboy,
Sorry for the late addition, but you may also get some relief with minimal risk of interactions by using topical NSAID's [in this case Diclofenac [Voltaren-is the brand name] Gel or [Flector= brand name] Patches], which are OTC [over-the-counter] depending on where you live, and are highly recommended especially for knees, hands, and other superficial areas. They are not regarded as be super effective on deeper structures like hips, because absorption through the skin is fairly minimal- which ironically, is what makes them safer and less likely to cause bleeding or GI issues.
Best,
PA
Hi, there has often been comments on this forum about MPNs being inflammatory or caused by such. If this is the case how is it that blood tests regularly taken show no evidence of inflammation? My MPN specialist advised me when asked that there is no connection between MPNs and inflammation . So who do we believe and what or where is an anti- inflammatory diet, I have yet to find one. I consider my diet quite healthy, I exercise daily and am very slim (some people think too slim). If I was to cut out an array of foods I would loose more weight which is not good for bone density. I just feel we go around in circles looking for 'the answer' but this site provides us all with information on what other people feel that has been of benefit to them. It concerns me that many of us spend a lot of money on supplements which have no scientific evidence as to their effectiveness , this greatly concerns my MPN specialist also. Anyway, back to the anti-inflammatory diet if anyone can point me in the right direction. Many thanks.
Eating keto or paleo are anti inflammatoryTurmeric and garlic help circulation and inflammation i take both and aspirin and eliquis as well as anaprox for kidney stones stuck in Euretha not on hu yet havent started since nov 21 diagnosis
There are quite a few different markers of inflammation. ESR, TNF-a, TGF-b, cortisol, various interleukins, and more. ESR and TNF-a are two of the more common markers that docs check. They may or may not be elevated at any given time. I was negative for all markers, except TGF-b and IL-10. Have also shown elevation in cortisol in the past. As much as I would like to have a consistent objective larjer for inflammation, there are too many for this ro be practical. I have defaulted to the somewhat subjective but very important marker of "how do I feel - pain-functionality." Ultimately that is what matters the most.
Regarding diet, most of the support at this point is for the Mediterranean Diet. There are other possible anti-inflammatory diets as well. Since you are following a pretty healthy diet anyway, you may not need any radical changes. My approach is to follow a mostly Med-style diet. Less red meat, more "white meats" and fish/seafood. More emphasis on plant-based nutrition. Fewer carbs and mostly whole-grains. Lots of anti-oxidant and flavonoids in foods. Avoid contaminants in the food stream like hormones, pesticides, antibiotics, xenoestrogens, etc. Limit refined sugars but allow for the occasional treat.
It would be nice if all of the MPN experts agreed on everything. There is still emerging data and room for everyone to learn more. Opinions are evolving over time. Perhaps there will be a better consensus on the role of inflammation in the future. Meanwhile, we need to educate ourselves the best that we can.
Here is a bit of what is in the literature about inflammation and MPNs
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
mpn-hub.com/medical-informa...
europepmc.org/article/pmc/5...
hindawi.com/journals/mi/201...
Another good presentation on inflammation and MPNs.
youtube.com/watch?v=qmykl0X...
Nutrition and MPNs
youtube.com/watch?v=sThHC72...
Thanks for your informative reply Hunter. I am pretty much doing the diet from what I read apart from the low carbs, I need these in large volumes to give me enough energy to do quite high mileage cycling and also to stop my weight crashing to base camp. I have just cut out sugar as in cake biscuits and chocolate, going to try it for one year and if the joints and muscles are still as sore I shall return to my love of such lovely food and I will make up for lost time. Wish me luck!!
Wishing you lots of luck!!
Given your current weight and activity level, you likely do not need to worry so much about carbs. Ultimately, it really is about burning the calories that we take in and ensuring that we get all the nutrition we need. There are some foods that care "medicine" in the sense that they reduce inflammation. The effects are subtle but real.
Regarding treats, my rule is that they are treats - not a major part of my diet. I avoid overdoing it on sugars and other intrinsically unhealthy food items. Not complete avoidance, just limited exposure. Food should be enjoyed. It is one of the great pleasures in life. We can eat healthy and well without feeling deprived.
All the best.
Hunter, please repost all this information anew, so that more of our members have a chance to read this! Excellent stuff!
Hi Janis12,
I agree with your comments about diet and supplement- some of what has been said here is completely unproven- including liver detoxification, pork as a pro-inflammatory agents [any more than any other meat-based diet], etc.
However the linking of MPN's with systemic inflammation is pretty well documented- see links below:
KEY ROLE OF INFLAMMATION IN MYELOPROLIFERATIVE NEOPLASMS: INSTIGATOR OF DISEASE INITIATION, PROGRESSION. AND SYMPTOMS
ncbi.nlm.nih.gov/pmc/articl...
Inflammatory Pathophysiology as a Contributor to Myeloproliferative Neoplasms
frontiersin.org/articles/10...
MPNs as Inflammatory Diseases: The Evidence, Consequences, and Perspectives
downloads.hindawi.com/journ...
Impact of Inflammation on Myeloproliferative Neoplasm Symptom Development
downloads.hindawi.com/journ...
Patients with myeloproliferative neoplasms and high levels of systemic inflammation develop age-related macular degeneration
thelancet.com/action/showPd...
Thromboinflammation in Myeloproliferative Neoplasms (MPN)—A Puzzle Still to Be Solved
mdpi.com/1422-0067/23/6/320....
I hope this isn't too overwhelming, but it does seem to me that there is pretty clear evidence pointing to the JAK2 [and other] mutations being triggers for systemic inflammation.
FYI, my "inflammatory markers" i.e., CRP [C-reactive protein] and ESR [Erythrocyte Sedimentation Rate] are both normal, but I do still have problems with joint inflammation. I take Nabumetone [a non-traditional NSAID] daily in addition to [and separate from] my Curcumin and Aspirin. It's the only NSAID I can tolerate without serious stomach pain- despite negative H. Pylori tests, and taking omeprazole twice daily.
I hope this was helpful.
Best,
PA
Many thanks for this information. I have now been on my sugar free diet for 12 weeks which includes the complete exclusion of cake, biscuits and chocolate. Joint and muscle pain just as bad and platelet levels rising despite everything else remaining the same. I am expecting an increase in my Hydroxy dose at my next appointment which I am not very keen to do but at the same time I do not want to experience a blood clot. I use very few chemicals in the house (I live alone so not really an issue), diet is good and generally following the 'healthy living' regime. I thought I would try the sugar free regime for a while to see what happens and then ramp up to the Curcumin if there was no improvement. I really do not want to spend my life having too constantly research all that is MPN, hours on the computer which does nothing for our health either, it's all about finding the right balance. I am going to have a browse through those links you have sent, they may give me a bit of a boost. Also, on Friday I am attending a MPN Voice Patients Forum in Newcastle Upon Tyne, perhaps an opportunity to bring up the subject of inflammation with the experts....watch this space!
Hi Janis12
You're so welcome- I'll be watching,
I didn't see where you mentioned your current diagnosis, but regardless, I have never been happier [well, except for before my PV symptoms began more than a decade ago], since having my HU discontinued about 2 weeks ago, in favor of Besremi [Ropeginterferon]. I have had two 50 mcg doses [it's an every 2-week subcutaneous injection] and I'm looking forward to increasing to 100 mcg tomorrow.
I have had no side-effects so far with the [near-placebo] doses I have had so far, which for me contrasted greatly with HU, on which I started having daily headaches, and after increasing to daily dosing- oral ulcer [canker sores], and now my [previously mild, but ^ to burgeoning while on HU] foot fungus is coming back under control with the usual treatments.
I have yet to feel any relief of the PV symptoms I originally began with- pruritus, fatigue, brain fog, and general slow recovery from any physical activity.
Best,
PA
Hi, it's all a bit of a minefield. I have ET diagnosed almost three years ago and put straight onto Hydroxy (Iwas just turned 60) and also blood thinners. It has just been this last year that I have been plagued with mouth ulcers and cold sores but fortunately no other side effects, well apart from the sensation of burning my insides! I also hate the fact that I have to use sun block daily, summer and winter as a result of hydroxy and the risk of skin cancers, it's like organising a military operation trying to get out of the door in the morning and having to carry the stuff with me to re-apply during the day. But I also fear the idea of starting new medication and all the side effects that come with them. Generally, I forget about ET when I am out and about, but I live on my own and I find that it tends to haunt me when I am at home during the night, and we all know that worry is never a good thing. Anyway, many thanks for your responses, it is always good to share information.
Hi Janis12,
Your comment re: "burning my insides" in the post above just reminded me of the other persistent side-effect I had been getting from HU, and consistent with the usual human condition, I didn't realize that it had gone away until you reminded me of it.
I have always had a problem with heartburn and GE-reflux [gastro-esophageal], but it has also always been well-treated by my twice-daily Prilosec, until HU- but within a day or two of increasing to taking 500 mg every day, it has been as if I was eating Italian food [w/ a particularly acidic tomato sauce], or Jerk chicken daily because of the constant burning and periodic acidic reflux, but now, almost 2-weeks since stopping, I just now realized that all of that hasn't been happening for at least a few days.
My comment above about the human condition comes in part form my observation that if people are experiencing anxiety- they can often easily tell, but it's hard for them to realize the relief when it resolves, because it's a return to a normal state of health.
Thanks,
PA
Things that are working properly don't get any attention. That's good engineering (and health). Busted stuff (marrow, anyone?) gets noticed. Great to have things not getting noticed.
Wow this is fascinating. Thank you so much. I need to watch again and take notes.
So before I listened to part of this video. Now I’ve listened in depth again. I never realised until the science was explained how important diet was and how inflammation markers could be followed. I’ve read posts indicating how we have inflammation but never understood the importance.
A huge thank you. I think all MPN dieticians should study that video.
You are so right Hunter. I am also much healthier now. My new MPN specialist told me to reduce any and all inflammation possible. Doing that has an affect on the thrombocytes. Ive managed to stop my ET and now it's even reduced a bit! It is long haul discipline.
Thanks for your informative reply 🙏🏾
How does one go about reducing inflammation?
Mpn1967... stress also has an effect on inflammation. So things like yoga qi gong , meditation are good to do. Living with AN MPN or any long term condition can be challenging. (Actually life is challenging generally isn't it ) !!!
Ps some 'healthy foods have an inflammatory effect on some people . Get to know what feels good for you.
Good morning. I was told by my Hematologist that my ET could be controlled but I needed to take Hydroxy, eating good foods and exercising (walking). I was diagnosed in January 2022 and so far everything has gone well although there was couple of down times. If it is not controlled then I could get Leukemia. Right now everything is looking very good and I have not had many side affects. I saw him last week and my platelets are going down and the Hydroxy is working very well. I love reading your messages because the are so encouraging and so easy for me to relate too.
If ET is not controlled, the danger is blood clots, not leukemia. I was diagnosed with ET in 2001 and I unwisely asked the haematologist what was the absolute worst thing that could happen. He answered leukemia but stressed that it was extremely unlikely. That didn't stop me worrying, probably because it's hard to think straight when you are newly diagnosed and scared.
However, very, very few MPN patients need to concern themselves with leukemia.
Anxiety is in itself damaging to our wellbeing. I have progressed to Myelofibrosis and am having a stem cell transplant this month. Looking back I am SO glad that I stopped worrying about what ET might turn into and just lived an enjoyable life for nineteen years.
Wow. Thanks so much
Thank you, I am so confused. Perhaps someone can help me. I have high blood pressure and now ET. I was told that my blood is thick but they seem to be concerned that I will bleed more than I should. So, if my blood is thick can I still get blood clots? I was told to be careful cutting my nails and toe nails and to be sure to tell other doctors (dentist, primary care doctor) that I take hydroxy. I have to go to the dentist tomorrow, should I be worried about my gums bleeding? I really appreciate all of your replies and read everyone of them.
Thank you for your reply.
The short answer is that it can progress to leukemia but that is very rare.Myelofibrosis is a more likely progression but even that only happens to a minority of ET patients.
We don't have control over whether it progresses, but it seems that Interferons may slow progression more than Hydroxycarbamide.
Hi Green. ET ist very well manageable. Make sure you have a good MPN specialist, not just a haematologist. Clean up you lifestyle, good food, get rid of chemicals in your home and body, etc. Really everything that causes the body inflammation!!
All my doctors (I’ve seen about 9 haematologists and have learned from all of them. You need to get well informed and become the manager of your illness. Don’t expect others to do it for you. It’s a process.
Et may turn to Fibrosis. As far as I know, it happens less with CALR. In seldom cases, a leukaemia might come after the fibrosis. Take really good care of yourself and ENJOY your life! Live for your health and try to avoid anything and anyone, that/who is toxic. 😁
All the best.
Anag
This is an excellent reply and I completely agree with everything you have said. Thank you 👌
Thank you. I don't have access to a MPN doctor. I live in New Mexico and only have a hematologist. He is from MD Anderson and feel he is a remarkable doctor.
He sounds good. I’ve had 2 hemotologist who were very advanced compared to one MPN specialist in regards to seeing the body as a whole and not as an isolated thrombocyte factory. I left after he couldn’t answer my many good questions any more.
The MPN specialist I have now (120 miles from my home) is offering more. She’s a team worker and actually gave me well explained options last week. All had forbidden my taking HU (I have Mediterranean anaemia) and also interferon (I have Hashimoto Thyroiditis which I’ve actually managed to reduce by 60%!) all my immune problems are also gone due to my striving to heal myself. She explained to me why interferon under her close supervision is the best alternative, although it works through my immune system. The Anagrelide, which I’ve been talk for almost 5 years affects my heart and it’s become too much. We also decided on a plan of action for the next months. I‘m now feeling hopeful!
Hi AndyKay,
This link is to the MPN specialist in New Mexico per the website I used to find my MPN specialist, who is seeing me as a consultant to my general Heme/Onc MD:
mpnforumlist.wordpress.com/...
This is the blurb they have about the list on-site:
List of Hematologists
The List has been a lifeline for MPN patients worldwide for more than four years. In that time well over 85,000 patients have accessed the List to find a hematologist. If you are fortunate enough to have an excellent MPN doctor, please consider sharing her or him with the MPN community. This is a rare disease and even more rare are physicians experienced in treating it. You can recommend your doctor here.
I have been making the 3-hour round trip [not counting hours in the clinic] to Roswell Park Institute in Buffalo, NY every 4-6 weeks for the past 3 months, and getting her involved in my care was a blessing .
On the other hand, hopefully after the end of November, my care will revert to my general H/O MD, for the foreseeable future- 'God willing and the creek don't rise'.
Best,
PA
Thank you for this information. I will definitely keep this doctor in mind if I feel I'm not getting the best care from my hematologist. Right now he is amazing and I know he is connected to MD Anderson. I think they are one of the best hospitals so feel very confident in him right now.
Yes it can. I had a repeat bone marrow biopsy last year as bloods suggested it had progressed. The big surprise was they discovered I had never had et in the first place, so 10 years on hydroxycarbomide for no reason!
Do you know what was the cause of the bloods that led them to believe it had progressed?
My platelets levels went really low
There was no diagnosis that should have been made, the rechecked my original biopsy and it was completely clear. My high platelets were likely due to my auto immune condition although at the time they said it wasn't
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