Hello…..Was given my diagnosis a week ago today ..still getting my head around it.
No obvious symptoms besides now I attribute it most likely to ET… fatigue.
My GP was monitoring my platelets getting tad higher each blood test over last couple of years.. he had put me on low dose aspirin but recently referred me to Haematologist as levels had gone over 600 … more tests.. JAK2 + ET. Haem started me on Hydra 500 1cap per day. Reading possible side effects scared me somewhat. So far only been few days … nothing untoward. But I do have a sensitive response to some medications even supplements …ie.. bad reactions to painkillers/opioid after knee replacements. React/allergy certain antibiotics. I do have ulcerative colitis of many years standing but well controlled.
Would appreciate others experiences .. how they have felt on taking Hydrea.. I know it’s an individual body response too. I know it’s vanity too… but hair loss? Skin and nail?
mall this freaks me out.
Also am due to fly to UK mid August.. feel a little anxious.
So grateful to have found this community… in reading past posts there is so much wonderful support, great information and reassuring advice.
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Stargaye
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Thank you for your reply.. and sharing too.. hopefully things will go ok. Hope you are doing well now and no further issues after your bowel ca. I am slowly discovering this getting older is no fun at times.
I’d suggest look out for skin cancers - but in Oz you sre skin aware anyway. I have MF and my only initial symptom was fatigue. Its good to have the diagnosis made. Take care. H
Yes I thought about that.. am fair skinned and have had few solar keratosis spots looked…thanks also to growing up in Africa. Am gaining lots of insight to MPN from this great forum. Grateful to have found it.
I was on hydroxy for 3 years without problems and then developed a reaction to it, so was changed to Anagrelide, been on that quite a few years now. It is scary when first diagnosed but you soon learn to live with it. ET is life long NOT life limiting!
Thanks for your reply ..I can be sensitive to some medications and even foodstuffs and body creams etc so am hoping my tolerances will able to cope with hydroxy.. and see I’m even learning the lingo. How did your reaction present itself ?
I got extremely painful ulcers on my feet which wouldn’t heal. Dermatologist said hydroxy was known to cause skin issues, however that doesn’t mean you will get them. Some people take hydroxy for many years without problems! Hope all goes well for you.
Hope you’re keeping well, it is a shock to get the diagnosis and takes a while to get your head round it, but read as much as you can about it. This forum is great for sharing your worries and getting great advice and support.
I have been taking hydroxy for 5 years starting with 500mg daily and increasing it to 1000 Mon to Fri and 500mg sat and Sunday, my platelets were at 1300 and are now steady around 320 mark. I haven’t had any side effects that have caused me any great problems. I feel the benefits of hydroxy far outweigh any issues. I’m sure you are sun safe already, using high factor sunscreen, wear a hat and avoiding midday sun.
Wishing you well on hydroxy with no side effects, and a great holiday 😎
Hello and welcome to the forum. Glad you found your way here.
It takes a bit of time to wrap your head around a MPN diagnosis. Finding out that you have a "blood cancer" is a big thing to absorb. Many of us look at MPNs like ET as cancer with a little "c" not cancer with a big "C". In many ways, ET is more like a chronic condition like diabetes. It is something you have to manage that can be managed for a very long time. It is a truism that you are more likely to die with ET than from it.
I was diagnosed with ET over 30 years ago. It progressed to PV about 10 years ago. I have lived a good life and at age 68 continue to do so. There have been some challenges along the way due to the MPN and other conditions, but the challenges have all been managed successfully.
Regarding managing ET, we are all different in how we respond. There are two primary medications used for cytoreduction, hydroxyurea (HU) and PEGylated interferon (PEG). These medications have different mechanisms of action, side effects and contraindications. Some respond well to one but not the other, I am one of those who cannot tolerate HU and it is ineffective for me. I have done much better with PEG. It has been more effective and much easier to tolerate than HU for me.
If you have questions or concerns about your treatment options, it is best to review them with a MPN Specialist. MPNs are rare disorders and most doctors, including hematologists, have little experience with them. Consultation with a MPN Specialist helps to ensure optimal care. Here is a list. mpnforum.com/list-hem./
It is fine to fly with ET. I fly quite a lot. The important thing is to reduce risk of thrombosis when sitting for long periods of time. I always get an isle seat and get up and move every hour or so. Some people like to wear compression socks. Best to consult with a MPN Specialist for case specific advice.
Hello and thank you for your informative and encouraging response.. I have also read a number of your other replies to other MPN members of this forum and am in awe of your incredible knowledge on the subject. Although I guess having been first diagnosed 30 years ago you have seen many advances and new treatment regimes in the field MPN’s.
I am not regarding ET as a cancer as such but merely another condition I deal with similar to my UC , OA and other ailments. I will read more into the pharmacology of HU and PEG and discuss further with my haematologist at our next consult in a few weeks. I am comfortable with him and his approach so far. His credential’s read well. I come from a medical science career background .. so am forever researching and reading… even now I retired last year. I have spent my life looking at cells and their changes.. normal to malignant…but sadly my haematology knowledge was from my early days and is probably sketchy now. So I appreciate all the input from the knowledgeable MPN “warriors” in this forum.
I usually take the normal precautions when flying with compression stockings etc and it’s good to read you’ve flown many air miles safely.
Thank you again for your informative reply. Greatly appreciated 😊
Thank you for your kind words. I had a steep uphill climb to learn more about the underlying science behind MPNs. My background is in a different discipline.
You are in a great staring point to learn more with a background in cell biology. Understanding MPNs requires an understanding of how cells function. It also requires basic knowledge about genetics, proteomics, physiology, and biochemistry. I expect you will find your background very helpful in learning about MPNs.
I agree is is best to not get hung up on the "cancer" word. While it technically is one it is also a chronic lifelong disease state that can be managed.
It is definitely worth learning more about the pharmacology of HU and PEG. There are also promising things in clinical trial like Besremi, bomedemstat and more. Here is a litle information.
PEGylated Interferon Pharmacology . Note this is from Besremi since Pegasys is used off label for MPNs
Metabolism: other; CYP450: unknown
Excretion: other; Half-life: 7 days Note for Pegasys half-life = 80 hours
Subclass: Immunotherapy, Interferons
Mechanism of Action: exact mechanism of action unknown; binds to type 1 interferon receptors and activates tyrosine kinase, incl. Janus kinase 1 (JAK1), tyrosine kinase 2 (TYK2), and activator of transcription (STAT) proteins, producing antiproliferative effects in the bone marrow.
There are many excellent resources available to learn more. Professional journals and webinars are some of the best resources. The MPN Molecular Biology presentation is an excellent starting point to learn more. mpninfo.org/conferences/202...
Thank you again for more interesting information and links to follow up on… and gather more questions to put to my GP and Haematologist at next appts. It will be interesting to see if my platelet levels have dropped after a month on Hydrea or if at all.
Do you or any of the other members have any insight into “natural” supplements.. such as resveratrol . My eldest son and his wife both sing its praises and I read that it naturally lowers platelets. They use supplements NMN and Resveratrol in particular and had been suggesting them to me for a while. I am a great advocate for healthy living and eating and try to follow as best I can .
I do not use resveratrol, but do use several complementary health interventions. I consult with an Integrative Medicine Specialist about the use of all supplements. Anything that is biologically active enough to help you can also hurt you and interact with things. Most Western trained doctors are not familiar with many complementary health interventions. It is outside of their scope of practice so they are understandably reluctant to recommend something. Expert consultation is very helpful in deciding what is or is not likely to be helpful.
The supplements I use are:
Inflammation: Curcumin, L-Glutathione, SPM Active
Insomnia: Melatonin
Boost immune system lowered by Besremi: Astragalus/Rishi
Liver support (LFTs affected by Besremi): Milk Thistle Extract
It is so encouraging to read all the replies to my post and questioning.. it is good to know that so many have responded to the treatment with hydrea. I too am always resistant to taking meds but in this case knew the benefits far outweighed the risks.
Good to hear to hear yours has been a positive response too.. fingers crossed for me too. Take care
hello Stargaye, welcome to our forum. So glad that you have found us. I do hope that you get on ok with the Hydrea. I myself have been taking it for 15 years now and tolerate it very well, but I know that isn't the case for everyone. Best wishes, Maz
That is so good to hear.. it was quite daunting when you get the diagnosis and then read all the drug info and side effects. As everyone has said we all react differently so fingers crossed I have no major issues.
Welcome - this community is a great resource and support system. Most people tend to tolerate HU well - I did not (nail discoloration; rashes) so switched to Peg but we and our conditions are so individual. Nest wishes!
Yes I did the masses of reading at first thing and probably got a bit overwhelmed . After a while things settle and fall into place. Don’t worry if it doesn’t all come together at once and try and give yourself time to chill and relax. You will be old hat at it soon enough and take it all in your stride. Any questions just ask
Hi yes I diagnosed a year ago put on Hydroxy but I was horrendous on it . Made me ache exhausted zombie drugged up. Gastric problems. I was fit & healthy before taking it & only put on it because over 60. Came off it after 12 weeks & took 2 months off it for body to recover. I am now on Peg Interferon like a breath of fresh air feel great. Inject monthly 45 as weekly gave me migraine I had never had before. It is a very good drug but always drink lots of water, excercise & Meditteranean diet & no alcohol maybe occasional red wine.
Keeping off sugars helps no end . Good luck MPN expert is best for advice .
Hello.. thanks for replying. I’m only a week in and have been taking Hydrea in evenings with/after food.. must admit have felt a little nauseous and drowsy after taking it last couple of days. But I do have a pretty sensitive digestive system anyway .. hoping I will tolerate it and doesn’t get worse. I try very hard to eat well and follow anti inflammatory/med diet but struggle letting go of sugars like chocolate. I don’t over indulge and drink very little alcohol anyway. Have followed anti inflammatory diet stringently in past and has helped… but sometimes I just crave toast and marmalade at breakfast time.
I too was pretty fit, agile and active till I hit 65 then it was like a switch was flicked and all the ailments and issues kicked in. Determined to get back on track.
I buy brown sourdough bread & still have a bit of marmalade or marmite at breakfast . They really urge us to keep off high sugar cakes & processed foods which I don’t eat . But a little treat of dark chocolate won’t harm . The MPN doctor told me a weekly treat won’t harm . I was on no medication prior to diagnosis I think I had only had it a year & convinced a very serious shoulder injury & tear with massive blood clot the year beforehand triggered it. My platelets were normal before the injury .
Hydroxy burnt my gastric tract as I had previously had gastric soreness which had been cured before the HU.
They gave me sickness tablets to take but still gave me horrendous gastric troubles & lost lots of weight on it & my hair started breaking off at base. As I realised there were other options I fought to get prescribed Peg Interferon . It can stop progression. It has been brilliant &I just squeeze stomach & inject after holding ice pack on skin. I feel nothing. Do read up on Hydroxy & its progress. It’s an old drug used because cheapest & slows platelets.
However after reading many articles it seems to create bad aches pains & tiredness.
The medics will fob you off that it’s ET.
It’s not it’s the Hydroxy. Fortunately I had 12 weeks off it & all the aches I had disappeared. I was approved for Peg Interferon & it’s been brilliant. I got back sailing cycling & flying long haul. Hair grew strong again . I am 69 but feel 49 on this injection.
So see how it goes but don’t let them convince you it’s the best option as it’s not. Good luck Julia UK 👍
That is so good to hear there’s other alternatives.. and will definitely discuss with my GP and Haematologist. I hate medications/drugs and try to resist big time unless absolutely needed. Like you I’ve been tracing back through last few years trying to pinpoint events when the fatigue and general not feeling myself kicked in..stress a huge factor ? plus x2 knee replacements (that’s actually given me new lease on life) I actually changed GP’s during this time as the last one made me feel I was malingering. My current gp is great…I’ve been with since begin 2020 resists unnecessary meds and always offers diet, lifestyle and other alternative options. I look at my sister who is 77 and is a dynamo… my mum only slowed down well into 90’s and was almost 97 when she passed away. I want my Joie d’Vivre back… I’m working on it. Winter here is Oz doesn’t help.. give me warmth any day.
Yes same here re no medication ever until this. Interferon good drug for me on low dose. Sorry it’s Winter but still mild there . My relatives live Tweed Heads, Sydney & Townsville, so have spent a few of your Winters over there 👍 Julia .
Sorry to hear of your ET diagnosis. It is definitely a lot to get your head around, but it sounds like you have the right background to at least understand the medical terminology. I had to keep halting my research to look up every third word. And what is ‘essential’ about Thrombocytosis anyway?😂
Then I found this fantastic forum, where we can ask questions, empathise and share our knowledge. What a godsend that was!
A bit about me: I was diagnosed with ET Jak2+ in 2016. I was put on hydrea straight away simply due to the criteria at that time being Jak2+ and age (60).
Like you, I was prescribed 1x500mg hydrea daily, and around six/eight weeks later my platelets had dropped from 500 to 288. I was then informed that I could have weekends free for good behaviour. So, since that date (7 years ago) I have taken 1x500mg Monday to Friday only. Platelets remain stable at 320/360. I realise I am lucky, my disease is indolent. Incidentally, I had borderline haematocrit values too, which also remain in the normal range now. So, I have had a complete heamotolgical response to hydrea.
I am grateful that this drug has lowered my risk of any potential thrombotic event.
I have had no issues other than the odd mouth ulcer in the very early days. I do get some fatigue, but I had that at diagnosis, so that is probably more related to the ET or possibly age.
Hydrea is tolerated quite well in the majority of people. But like all medications there will be some that it doesn’t suit. Equally, the same can be said of the interferons. Unfortunately, for some, it’s trial and error. I hope you’re one of the lucky ones and see a positive result.
Hi and thanks for your response… so good to hear you’ve tolerated Hydrea so well.. fingers crossed I too will be one of the lucky ones. I loved your comment.. what’s essential about Thrombocytosis… my sentiments exactly. I’m trying very hard to stay positive and look at it as another minor challenge to tackle and deal with. Absolutely hate the fatigue side of this and that I think has been the indicator something was not quite right with me. I have had a trip organised to the the UK … leave in 4 weeks and now with this ET diagnosis and new medication regime feel a little anxious about that as the travel time from Australia is 24hrs… I’m sure I’ll be fine but it’s also the unknown.
Thanks again for wonderful support and your reply … take care 😊
Medically, "essential" means it's not secondary to another condition. Nothing to do with the everyday meaning of "necessary," although there must be a linguistic connection - I can't think what it would be.
Hi, was diagnosed with ET when I was 22. I am now 59. I was also scared when first diagnosed, & there did not seem to be many other people diagnosed at that age back in 1985/ did not have the information we have now. I had no symptoms but had a random blood test whilst working at the hospital. My blood count was 1800 but it was still counted by humans back then! After many years of no treatment as I was fit & healthy, I started on interferon. I had some nausea initially which wore off & was on the meds many years before I started getting joint pain. Haematologist said I seemed more sensitive to it so about 20 years ago I went on Hydroxy. I have been fine on it so far. Though my blood count is always a bit up & down. I take 1000 Mon-Fri & 1500 Sat/Sun plus aspirin (Cal R mutation) I get tired sometimes & my skin is dry (I put sun cream on regularly) but I have not had problems with my hair and whatever symptoms / side effects I have, feel they are currently fine/ manageable. It is difficult sometimes I think as we can have a no of health things going on which we may feel inclined to link to ET or Hydroxy when there might be other things going on for us. It is all very individual which is why it is always worth passing concerns by your haematologist and GP. I have had a DVT (not linked to ET) but still travel with stockings, standing up & moving as much as poss. As others have mentioned, it does take a while to adjust to news following diagnosis but would advise as best you can to not let it rule what you do. Just crack on and enjoy your life….
Hello….and thank you for your reply. Wow.. that was really young for your diagnosis and to cope with it at a young age. You really are a true MPN warrior and great advocate for ET. It is so encouraging and comforting to read everyone’s journey with their own particular MPN. I am so grateful to have found this community and being able to gain such a better insight into my diagnosis. Now as I think back my ET has been bubbling away probably for quite a few years and am grateful to my GP for always following up with my bloodwork etc. And also trusting my own gut instinct that something was NQR with me and still questioning and searching for answers to my health issues. The biggest thing that seems to drag me down is fatigue if I don’t have enough sleep… if I get 8-9 hours I feel like a normal human being 😉
Thank you for sharing and your encouragement. Stay well
I have taken Hydroxy for 5 years for ET+ JAK 2, and only had nail shredding, and hair loss for the first 3.5 years The last year and a half I have developed almost all the other side effects. I think it is cumulative. I, too, am VERY sensitive to all drugs, so it is a quandry.
hello and thanks for your response. I know I am only beginning my journey with ET but it is the scary unknown that is so daunting. And reading the side effects of Hydrea is not encouraging… my first concerns were hair loss, skin and nails. And of course susceptibility to infections. Despite my UC which has mostly been well controlled since diagnosis almost 30 years ago I have always been fairly healthy and avoided most coughs, colds, flus etc. I am hoping I can maintain this and will check with my doc as to what supplements I am able to take. Previously I’d rather take supplements.. natural where possible and tweak my diet to maintain optimal health. Look at me now.. I am not a fan of medications and I have an array of them in front of me.
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