I went in for a routine blood test before a cardiac procedure in March, 2015, and just before I left the hospital, the nurse casually asked, "Has anyone ever told you your platelet count is a little high?" My count was about 650. The upper range for a normal platelet count is between 400 and 450.
I asked the cardiologist about it at my next appointment, and he said that high platelets weren't in his bailiwick. So I made a note to tell my GP about it at my six-month blood pressure check a few months later. She thought stress might have been a factor; I'd been seeing the cardiologist for a mitral valve that was getting worse and will probably need surgery, so, yah, I'd been a bit stressed. She ran another blood test. Platelets were still about 650. So it was off to a hematologist. And I'm now one of a tiny number of Americans with a provisional diagnosis of essential thrombocytosis (aka thrombocythemia).
ET is technically an incurable blood cancer. That sounds dire, but the disease is treatable, and doctors seem to agree that you can live out your normal life span with it. But because so few of us have ET, it's not one of the cancers that gets a lot of attention. I googled it, and found just one 5K run for ET, and as far as I know, ET patients have never been assigned one of those colored ribbons. So it's hard to find other people to share info and experiences with. I'm hoping this blog will be a place where people can get find understanding from other people in the same boat.
This site is very informative. Thank you. It will be a great help and comfort to others who have ET. Sending you virtual hugs and support. >^..^< I also appreciate that this is a Dr. Oz-free zone.
ReplyDeleteHello, I too, have ET if I remember correctly. I was referred to a specialist when I had a DVT in 2010 that did not respond to warfarin. And I am sure this what he said I had as he said co setting about a genetic marker and sticky blood and to monitor I myself. Excellent diagnosis I know. Maybe he expected the doctor to tell me more, but he didn't the only thing I was told to do was to 'monitor myself, stay hydrated and take aspirin if I felt funny or to go back to the hospital'. I guess I have sort of done everything except the last one! I only looked on the Internet today and found your site by accident because I felt a bit dizzy earlier. I did my normal act - took two aspirin and put my legs up.
ReplyDeleteHi, Janine! Thanks for visiting. Yes, ET seems often to be a diagnosis made by "elimination" of any other factors, and many people are diagnosed when they develop a blood clot, as you did. Are you better now? I hope you find info on her or in the links at right that will help you ask your doctor some questions on your next visit. I would sure want to find out if taking an aspirin a day would be beneficial, since clots seem to be the most immediate threats for those of us with ET. Please check in again and be well!
ReplyDeleteNice to find this blog. I was diagnosed with ET and a spot of PV last October- Platelets stand at 640 and have Diabetes 2. I am 69 and was immediately put on Hydrocarbamide. I couldn't bring myself to take the tablets. So am working on bringing sugars right down. Told haematologist that I couldn't take the chemo. He is happy for me to take aspirin and just watch and wait. I may need some blood letting to bring down my haematocrit (4.95) I am happy with that but have a deep aversion to the chemo pill. Am I being foolish?
ReplyDeleteI don't know if you are being foolish, but if you are, so am I. I am refusing hydroxyurea and so far am just on a baby aspirin and 5K gm. of fish oil. Platelets are just shy of 600, and if they rise I may reconsider. The main issue is that I need a hip replacement and so far two surgeons have said no unless platelets are in the normal range. So, I limo around.....
DeleteGood. to find this blog. 71 and newly diagnosed with Jak2 ET and prescribed one a day Hydroxyurea 500. Platelets at last count 714. Am quite concerned like you re side effects. Have decided to only take one tab 3 times a week and see what the results are in 7 weeks's time - I will just have to wear the consequences. I am taking the Aspirin as prescribed. Do you know if there are any studies on actual death events directly related to ET. In saying that it is relatively rare; It will probably become less rare as more people will probably be diagnosed as the gene mutations show up in our aging population.
DeleteWelcome, LizG. Yes, there are some studies that suggest that death from stroke is a direct result of ET. The good news is that if you are first diagnosed with ET, you can take precautions to lessen that risk, both with Hydrea or other oral chem, and with reducing your overall stroke risk. There's more about ET and strokes here: http://ethrombo.blogspot.com/2016/07/thinking-about-stroke-risks.html
DeleteI think you could be right about the increase in ET in the aging population. But I also think ET is being better understood and diagnosed more often.
My platelets are bouncing between mid 650 and low 700s. I expect to be on Hydrea at some point, and I would rather take it before my platelets get much higher. I might try your trick of easing into Hydrea ...
Please visit anytime. There is also a FB page that links to and from the blog: https://www.facebook.com/ethrombo/
Hi, Eva. Thanks for visiting! If your hemo is OK with your not taking the chemo, I'd let that be your guide. I don't want to take it either, though my dad (also had ET) took it. It made him more tired, but it reduced the size of his spleen, which was more troublesome. So for him it was a good choice. I've heard Jakafi (ruxolitinib) carries fewer side effects. It's been approved in the U.S. for PCV, but not ET. It's extremely pricey ($7,000 per month), and some insurance here (i.e., mine) won't pay for it. I was also veering toward diabetes 2, but it's fine now that I cut out sweets. Probably helps that I lost a bit of weight, too. Please check in again!
ReplyDeleteThsnks Jean. Well as I wrote earlier- I did not want to go on HC. So I embarked on a process (started last Oct) of self auto suggestion and Tao bone breathing (2 hours a day!) plus resveratol, raw garlic and Vit C) I droppped my platelets down to 405. I am delighted but my haematologist was not happy. he is puzzled and perturbed. I don't fit into his paradigm. He was somehat mollified when I said I would have a phlebotomy later next March. (I still have high haematocrit- 5.5) I think this is no worse than giving blood and keeps him happy. I said I had read research that resveratrol brought down platelets. he didn't want to know. I didn't dare tell him about Tao bone breathing orauto suggestion - he probably would have had apoplexy.
DeleteHi, Eva,
DeleteAll I know about resveratrol is that it's in the stilbene family of substances along with G6, which showed some promise in MPN treatment in mice in a study reported in Neoplasia in 2011. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3223609/
Did your doctor say why he wasn't happy you were on it? Maybe he doesn't think it has been tested enough to feel comfortable with it?
In any case, that's great news about your platelets.
I don't know what Tao bone breathing is, but I do yoga stretches for a few minutes two or three times a day. It seems to help the fatigue and improves general well-being. Arizona State University is doing a study on yoga and MPN systems. Waiting to see if I will be picked for that.
Please let us know how the phlebotomy goes. Isn't high hematocrit usually associated with PV? How does that fit with your ET?
Hope you continue to feel well. Good to hear from you!
Jean
I just bought a Tibetan Bone Breathing CD on Amazon, and have been listening to it. Very relaxing! It supposedly helps you cleanse your bones of toxins by envisioning clean fresh air flushing the marrow. I figure it cannot hurt.
DeleteThanks for this helpful blog. Just curious, did your dad eventually succumb to complications from ET?
ReplyDeleteHi, Steve, glad to hear from you! No, Dad did not die from any complications from ET, but from end-stage COPD. Like many people, he wasn't diagnosed until he developed a blood clot (small one in his leg that was successfully dissolved). However, his doc kept him on Coumadin, and he did have some severe bleeding episodes from that, but recovered. He also had a lot of abdominal swelling and fatigue, but that was chalked up to the COPD until the clot developed. Once he went on hydroxyurea, his abdominal swelling went down, which made him more comfortable, but his fatigue levels went up. Was that the cause of the med or the advancement of the COPD? Hard to know. I'll write a post soon about his experiences with ET. If nothing else, it might help others to see how treatment has changed. Hope you'll stop by regularly.
DeleteYes the dctor isn't happy with stuff that hasn't been tested in clinical trials. Yes it seems I have a bit of PV too. I just had some leech therapy which I think is good but think I prefer phlebotomy. My platelets are at 436- so keeping fairly low.. Yes I think yoga like Tao bone breathing brings oxygen to the deep parts of the body Will be interested in the yoga trial- I d some yoga each day too
DeleteGood news on your platelets, Eva! Anything below 450 is pretty much in the normal range by some standards. I just had my blood drawn this morning, so should know tomorrow. Will try to avoid looking at labs online while at work in case there's bad news. How is your hematocrit? Isn't that what gets too high with PV? I've heard leeching is pretty common now, but I'd rather deal with needles than slime. There are several Youtube vids on bone breathing. I will check them out. I haven't been called yet for the yoga trial, though maybe still a chance.
DeleteHi Jean, nice to meet you there. I saw your blog on calr mutation. I am calr+ and would like to connect with you. Trying to reach you via facebook, I left your a message but didnt hear from you.
ReplyDeleteHi, swess. I messaged you through FB. Thanks for writing and checking out the blog. Hope you found some helpful things here.
ReplyDeleteHope your blood count was okay. I always find it stressful waiting for it. And I love the sound of the yoga trial. My haematocrit is at 5.1 at the moment (down from 5.8) Will have a phlebotomy at end of monh. Keep me poste with your developments. It is nice to communicate with a fellow sufferer. Do you ever think about the cause. For me I think it may have been exposed to radiation and DDT as a child in South Australia.
ReplyDeleteI do think about the cause, and I wish more people (professionals) did. The only thing I could find was EMF exposure, stress, and heavy metals. I was diagnosed with lead in my blood and just went through a two-month detox program. It made no difference in my platelet count, sorry to say. We are all exposed to high EMF's every day, and who does not have stress? It is good to manage it best you can: meditation, yoga, walks in nature, etc. As for EMF, I may buy a product that a friend of mine sells, called Bio-Electric Shield.
DeleteWhen I was a kid in AZ they did a lot of aerial spraying of pesticides and tested atomic bombs. My doctor thinks my ET is a result of exposure to agricultural chemicals. I am looking for alternative treatments or even a cure. I live in hope.
DeleteStill waiting on the blood count; lipid profile and vitamin levels my family doctor ordered came through and were good. The ET, my bad heart, and "bad" cholesterol levels are all part of the larger clot risk picture. So the lipids were good news.
ReplyDeleteI sure do think about the causes. I grew up in a town where the local chemical plant manufactured napalm, agent orange, and all kinds of other stuff at a time before the EPA regulated anything. I've read that some Vietnam vets here in the States have developed ET after exposure to agent orange. Why environmental chemicals might cause some people's genes to mutate and others not to still seems to be an area that researchers should explore. I wrote about my dad here: http://ethrombo.blogspot.com/2016/02/all-in-family-my-dads-history-with-et.html
Hi! SO glad to find this blog. I was recently diagnosed with ET, from pre-surgery labs. Surgery is off (hip replacement) for now. I do NOT want to take hydroxyurea!! It sounds awful, and I am a natural-medicine advocate. I am wondering if anyone out there has had any luck taking CBD marijuana (the non-stoning kind) for ET, and if so, what outcomes have you had? Reading up on ET symptoms has explained a few things (muscle aches due to too much lactic acid, as well as vision disturbances/optical migraines). Looking forward to corresponding with other with this weird disorder.
ReplyDeleteWelcome, Katherine! I'm glad you found this site. Was your surgery canceled because of your ET? Hope you are finding some relief from hip pain as you get a handle on your brand new ET.
ReplyDeleteThere is also info on hydroxyurea on the blog here: http://ethrombo.blogspot.com/2016/04/what-patients-say-about-hydrea.html I felt less frightened of it after I did some research and realized that most people do OK after some adjustment. I'm more concerned that Hydrea might not work for me.
If you are looking at alternative medicine, Cancer Compass, (see links at right), might be helpful for you. Alternative meds and herbs such as resveratrol and turmeric and dietary changes have come up over there.
I've found that staying well-hydrated (72 oz of water per day on top of other fluids) and a two-minute yoga routine three or four times a day has helped a lot with headaches and fatigue. Massage is also very helpful, though I can only afford it about once a month. I told her I took aspirin, and she was careful about bruising.
Other than that, humor--as much as you can get--is also good medicine.
Hi- Yes, surgery is off for now. I recently had a stem-cell treatment, and am hoping to grow new cartilage, bypassing the need for the surgery. It can take up to six months to know it it'll work. It's been seven weeks and nothing so far. Thanks for the tips on natural stuff. I also went to a doctor (internist) who practices ayurvedic medicine as well and she gave me some dietary guidelines. I have been lazy about implementing them as they mean a different way of eating, that my husband would not appreciate (and as I am the cook I'd most likely need to cook two separate meals). I need to get more on board with stress reduction, bone breathing and the other things. Certainly cannot hurt.
DeleteI have had Essential Thrombocytosis since around 2002. At that time, the internet was not well established, and I couldn't find anything. I had gone for my annual checkup with my internist, and she called me a few days later to tell me my platelet count was over 1,100,000, and that she was setting up an appt. for me with a hematologist for the end of the week. When I looked up platelet counts, the average was somewhere around 400-450. I thought it made no sense that mine was so high; I should be dead! I waited until the appt. and brought a friend with me, and bombarded the dr. with questions. That was when I also learned that although the range was described as 400, it meant 400,000!! Unfortunately, this dr. and I did not seem to get along at all. He prescribed Anagrelide for me, and it gave me a massive headache. I asked the pharmacist if I could take it in smaller doses, and he refused to say anything other than I had to take it as prescribed. I called the dr. and asked if I could take less and he almost immediately told me that if I was refusing the medication, then he couldn't work with me. I finally got him to listen and understand that the headaches were massive, and if I could work it into my system more gradually, so I didn't suffer the headaches, I was more than willing to take the prescribed dosage, AFTER my body adjusted. I've learned a lot about drs., medication, and and pharmacists through this process. I switched to another hematologist almost immediately, and I have loved and cherished all the hematologists I have had since. I've also found a great pharmacist and choose to discuss my meds at length with pharmacists, as they generally know so much more than docs about meds. I am now on Hydrea, after having been on anagrelide for many years. I had tried Hydrea at one time and it didn't work very well for me. But this second time around, it has worked fine. It's less expensive than Anagrelide, but I was able to get Anagrelide at a good price at Costco eventually. Other than bruising easily and having difficulty getting a cut to stop bleeding quickly, I haven't had many issues related to my disorder. Recently, I learned I need gum surgery prior to getting a cap at the dentist, and my hematologist ordered a platelet function assay. Although I'd never had one before, i is only a simple blood test, and it was done to be sure the periodontist can do the surgery without my bleeding profusely. There was a time at the dentist, I bled having my teeth cleaned and it's only happened that once. I did have a car accident years ago, and when the air bag inflated, it bruised my face. Half of my whole face turned purple, although it didn't hurt, but I got very strange looks wherever I went, as people were looking around to see if I brought the "wife beater" with me! LOL Most of the time I forget I have it and every so often, I look online to see what is out there about ET currently. I am so glad there is more information now for those of you diagnosed, and your blog is a great service for newly diagnosed folks! It was very scary for me back then. Also, I recall a time when I looked it up on the internet a few years after my diagnosis, and the only place I could find it was a website dedicated to rare diseases. Just that expression, "rare diseases" sounds scary, but I think this is a good one to have compared to so many others!! If there is anything else you would like to know from me, I would be glad to share. Again, thank you, Jean, for your service to this unique community! And you are right, humor IS the best medicine!!(I have no idea how I would be able to manage or cope--coming into my senior years--without it!!
ReplyDeleteHi, Grace. That story is SO familiar! My dad thought the same thing when he had ET, that he went from 400 to over a million on his platelet counts. Doctors really need to explain this stuff or give people a handy fact sheet they can take with them. I am really happy you found a hematologist you liked. Life is too short to mess around with doctors who don't care about you. I am just on aspirin for now, but my cardiologist reviewed both Hydrea and Agrylin (anagrelide), and told me that anagrelide had too many side effects for heart patients, and that Hydrea would be the preferred drug for me. My doctors are all hooked into the same hospital system and can see my chart on their laptops. They actually do read everyone else's notes. This leads to fewer errors and problems. It also means less duplicate tests and stuff. Thank you for stopping by the blog.
ReplyDeleteIt's great coming across a comment thread filled with such supportive upbeat folks. I'm 34, diagnosed with ET yesterday which was shocking but also answered some long running frustrations with fatigue, numbness and headaches. Been on a whirlwind of articles that cite median survival of 20 years, to people that have been monitoring their condition and keeping on unaffected for +30 years. I'm trying to tread on the adequate site of information, and that this is generally a benign condition that doesn't shorten life spans. Been pouring over diets, and things. My recent count was 550, and just started taking 81mg of aspirin as if today. Hopefully this counters the headaches. My dad has been busy researching and ready to pump me full of turmeric, garlic etc :) So I'm looking into as many natural solutions as I can
ReplyDeleteThank you all for the cheery discussion despite "living with ET" I find that abbreviation so funny, I always did want to live with that cute lil alien. Something got mixed up in translation at the "laws of attraction" wish department :P
Can anyone speak to experience with blood thinning dietary solutions? I also live in an area that has medicinal cannabanoid tinctures etc, but I haven't come across any info that deems it as useful, and curious about that avenue.
Thanks again, this is my first foray into connecting with others and it feels like a cozy corner of the web :)
Dan
Hi, Dan, and welcome to the site and the wonderful world of mysterious blood ailments. I also take a baby aspirin, which I haven't had trouble with except that I bruise a little more easily. I am sporting some nice ones after some yard work (and I use the term "work" loosely). If you're looking for some specific info, there's a little search this blog box at the upper left. Please stop by any time. I try to post a couple times a week, and I put alerts of new stuff over on the corresponding Facebook page if you are interested in getting info that way. Please remember that everything in here is offered merely as info you might want to discuss with your doc.
DeleteHi Dan, My haemo can't tellme if I have ET or PV. I think it is the latter. I have had some success with bringing down platelets wih garlic and turmeric. I also doa self auto suggestion technique taught by a guy in Brisbane - he is offering free tuition if you look up his website- but it is hard work about 2 hous a day but I think it has helped me keep my counts down you can find him on http://www.centre-pst.com/index.php?option=com_content&view=article&id=72&Itemid=77
DeleteCancer Compass, in the links at right, has had discussions about turmeric, and I see it mentioned on other cancer sites. I might dig around to see what I can find.
DeleteEva, didn't you also try resveratrol? I was told by my doc that ET can morph to PV or MF, which is why the three diseases are lumped together in a class as MPNs. How are you feeling these days?
I'm still looking for the anti-fatigue magic bullet. I don't seem to feel quite as tired, but maybe I'm just getting used to the new, lethargic Me.
Yes I am still on resveratol. Trouble is I am having venesections which rise my platelets. I am not feeling particularly fatigued but do suffer from night sweats
DeleteWhat's a venesection? Is that when they remove blood? I've heard of that for PV. I wonder why it makes platelets go up? So much to learn!
DeleteHi Jean, thank you for creating this blog and being so inclusive. It's nice to hear from you. I'll definitely be sifting through CancerCompass and digging up what I can over there.
DeleteEva, you've done the consultations? Are you currently spending 2 hours a day practicing the techniques learned?
I was just looking at the site, looks fascinating.
Thanks so much everyone.
Hi fellow ET"s, I am a South African female and I was diagnosed with ET in 2014 at the age of 48. I. I was put on the hydrea which apart from the recurring mouth ulcers I've been experiencing,has been working for me. I have also been taking one aspirin a day. My last blood count indicated that there's been an increase in my CBC from 400 to 600! As a result my heamothologist wants me to see him asap to discuss the medication. I am anxious and honestly afraid of what he has to say to me! Thanks for sharing your experiences
ReplyDeleteHi, Glynnis. Welcome. First off, my dad also had ET and took hydrea, and sometimes his blood counts went up (into the millions). But sometimes it went down. So I hope you will not get too nervous. It could be that your doctor will want you to take anagrelide (Agrylin) with or instead of the Hydrea.
ReplyDeleteDo you know what kind of ET you have? Is it JAK2 or CALR?
Everything I've read shows that those who are relatively young (under 60) with CALR may run higher platelet counts but actually have less risk of blood clots, which is the main concern with ET.
Ruxolitinib (Jakafi) might also be prescribed if you have JAK2 type of ET. It's not approved for use with ET here in the States yet, but may be in S.A. It is incredibly expensive here, but other countries may have better coverage for oral chemo than we have.
Have you been feeling OK? Please let us know what happens at your appointment.
There's also a Facebook page for this site. Link is over at the right under "Info Links." If you want to "like" the page, you'll get updates about what's going on over here on the blog, and you can also post questions.
I know this is all scary, mostly because ET is so rare. The more you know, the less overwhelming it might seem.
Hi Jean,thanks for the welcome and prompt response. Yes, I have JAK2 type. Have been experiencing some dizziness and headaches of late but didn't think too much of it until my doctor called with the results of my recent blood tests as he normally does and I actually started questioning whether it was related. My fear is that I thought that hydrea was a better medication than the agryline.im still learning about my condition as I go along.
DeleteYes, we're all learning as we go, and as more is discovered, the learning curve never ends. Your doctor sounds like he is taking good care of you and wants to catch potential problems. I get headaches and dizziness, too, but that seems to be allergy related. I also have a bad heart valve that causes visual distortions ... as does ET. So always hard to figure what ailment is at the root of what symptom.
DeleteGlynnis, for me, i was taking one hydrea every night. When my count went up, the dr. had me take another pill on Monday and Thursday mornings, and that seemed to reduce my count enough. Also, I was first diagnosed around age 50 and my count was reduced to around 600. Then when I got a new dr., she preferred it be between 450 and 500. Now it's been a little over 500 and she doesn't seem at all concerned. I now so many of my different CBC blood counts(not platelets)are out of range, and it's been considered okay with this disorder. So best to stay calm and ask all your questions to the dr., and they can figure out what you'll need next or need to change. I've learned that the worrying causes stress, which doesn't do a body good, so if you can practice whatever helps you to remain calm, that could give you something to focus on that you can control! Good luck with dr. appt. Whatever we advise, you can always take what you like and leave the rest...We're just trying to be supportive and only you know what's best for you. Take care, Glynnis!
ReplyDeleteGood point about the stress, Grace. How are you doing?
DeleteThanks for sharing and support,it does make a difference.:-) I was obviously going ahead of myself,(that A-type personality!!) I remembered the initial side effects and the period during the adjustment if the medication. Having been "healthy" ,and not accustomed to taking any form of medications before,to this drastic measures if ,3 hydrea Mondays,Wednesdays,Fridays and then ,2 on the days in between. And now the possibility of a new medication and who knows what those side effects are. Be that as it may,I will remain calm and positive. I will keep you updated on my progress.
ReplyDeleteFor me, until I was able to initially find out all I could about ET and got on the medication, got over the headaches I was experiencing until my body adjusted to the meds, I don't give it much thought at all. I don't experience much effects from it and if I do, I don't think about ET first. I generally am thinking my symptoms must be caused by something else, i.e., night sweats, which I attributed to menopause, but I see now it could be the ET. I have a strong faith and am in the counseling field, so I am always doing a lot of inner work on myself and deal with whatever comes up. Over time, as my faith has deepened and I age, I have a remarkable positive attitude and feel much gratitude and hope about life! I grew up in a home where my parents were depressed and I was also, and didn't even realize it until I tried an antidepressant in my adult years, so I realize my story may not be typical., but I can always see the silver lining in everything. As for ET, for me, for the most part, I am grateful to have this condition, as opposed to so many others out there that seem so much more difficult to live with daily. Jean, what you have done is remarkable, to establish this blog as a way for others with ET to have a voice and a way to communicate with other people living with the same condition. I will admit when I was first diagnosed, there was barely anything written about it and I never met or knew anyone else that had this until I saw your blog, which has been a great thing to have found! I have now had this for over 15 years, and it just hasn't seemed to have impacted my life very much, thank God!! And when I say that, it could possibly be because I have had other issues that have had more affect on me than this...I don't mean to diminish this condition for anyone else. I pray for all of you that have this and hope you come to terms with it, find peace around it! (If possible, it always helps if you can make lemonade out of lemons!)
ReplyDeleteYes, faith, a sense of humor and gratitude, the ability to take things one day at a time, patience, the ability to adapt to change ... all of that can make life better and ease the anxiety of dealing with a chronic disease that is poorly understood. I used to be a very high-energy, Type A person, no nonsense, let's get a PLAN, for Pete's sake, and get rolling. Fatigue has forced me to slow down, listen to people, and think about what really matters. I'm not happy I got ET, but it has not wrecked my ability to find pleasure in life.
ReplyDeleteI, too, am a huge fan of gratitude. It has been a life-saver during the past ten years, dealing with an adult child who keep going off the rails due to severe bipolar disorder and substance abuse. That and having a hip that needs replacing adds up to a large stress-load. My gratitude practice keeps me balanced and calmer than I would be without it. And I strongly agree that humor is very important!!
DeleteHi fellow ET's, it's been just a bit more than a month since I was called in by my doctor to discuss my medication. It was decided to change from the hydrea to anagrelide. So after having had another full blood count,today I continue my journey, with new baggage (tongue in cheek,do excuse my humor!) I need to have another blood count in two weeks time to see how the count reads. In the interim I need to monitor my heart for palpitations and advise my doctor immediately. So after my first pill this morning I felt slightly dizzy and other than that normal! And I remain dwelling in a spirit of gratitude!
ReplyDeleteHi, Glynnis! Good to hear from you again. Why did the doc change your med? My cardiologist advised that anagrelide would not be a good choice for me because of my bad valve, but if you are otherwise healthy it seems to be a good choice. Because of the controversy iver whether hydrixyurea is associated with leukemia morphing, a lot of patients prefer anagrelide. Your insights and info will help others here, I'm sure! Keep us posted and stay well.
DeleteHi Jean. I had an ECG beforehand and all seems in order. I have been battling with aggressive mouth ulcers attributed to the hydrea. I have to admit that they are so severe at times it has made me rather depressive. So we're trying the anagrelide for now. I have to agree that it's very expensive.i am blessed to have a good medical aid scheme who has authorised my medication.
ReplyDeleteThat sounds awful. Dad had terrible problems with mouth ulcers, also. He was also switched to anagrelide and that seemed to clear them up. Hoping for the best for you.
DeleteHi, Katharine! I'm checking make sure all your comments published. I'm on my tablet right now, and it is sometimes wonky. Will straighten this out when I have access to the PC again. Haven't forgotten about you.
ReplyDeleteHi Jean- As you know from the other blog, I started on Hydrea on the 9th. I am keeping a journal of any side effects. So far just dizziness on the first day. I also went to the health food store today and got some immune-building herbal tinctures as I know any kind of chemo can compromise the immune system. I have always been super healthy and I would like to stay that way!
ReplyDeleteWishing you the best on the Hydrea, Katherine. Thanks for posting here, too. Let us know how things go. Am hoping you will be able to have your hip surgery soon!
ReplyDeleteWishing you the best on the Hydrea, Katherine. Thanks for posting here, too. Let us know how things go. Am hoping you will be able to have your hip surgery soon!
ReplyDeleteWell, had my first blood draw after staring the HU. It's been one week, and would you know, my platelets WENT UP, form 602 to 621. I am bummed. Maybe it takes a bit longer than one week. I am hoping the hematologist will not want to increase the dose. I looked online to see if I could find out what to expect, but no luck. I have an online message in with the doctor to see what he says.
ReplyDeleteI think Hydrea is supposed to work pretty fast, but how fast might vary depending on your dosage. I wonder if stress could be a factor? It will make platelets jump, and I know you were upset about taking chemo, understandably so. Hope your doctor can give you some answers. How are you feeling? Do you still have the dizziness?
DeleteHi all,hope you're well and soldiering on! So I had the first blood count after being on anagrelide for a week. Results were pleasing and decreased from 721 to 600. The mouth ulcers have disappeared!am feeling good and blessed to continue with my routine.will keep you posted on the progress I make.
ReplyDeleteGlynnis, excellent news! So glad you are feeling better without the mouth ulcers. Dad had problems with that on Hydrea. I am patiently waiting for the summer heat to subside, and expect to feel better when the danger of hitting temperatures above 80 drops. Having some brain fog and a pesky bout with sciatica, but those are just everyday problems, and probably not anything to do with ET. Have restarted yoga after slacking off, and feeling relief from the sciatic problem.
DeleteHi Jean and fellow bloggers. Just an update since my last correspondence.Its been 2 months since I switched from hydrea to thromboreductin. Results today showed that my count had doubled along with shift in white cell count as well. I was advised to go back in hydrea. Another option would be Interferon (not sure if I have the correct spelling). Has anyone out there heard and used this medication?
ReplyDeleteHi, Glynnis, yes, interferon, also known by the trade name Pegasys. I believe it is typically given by self injection (like an insulin shot). All I know is that some doctors don't like it because patients report more side effects than with Hydrea or Anagrelide. However, there may be some dosing alternatives (weekly vs. daily shots) that patients tolerate better. If it were me, I'd ask the doc about these issues. This drug did come up at our meeting Sunday, and here is the contact page for MPN Advocacy. They are very knowledgeable and may be able to give you more info. They can probably give you a good list of questions for the doctor. You might also ask them about ruloxitnib/Jakafi. Hoping for a good outcome for you! Please let us know what you find out: http://mpnadvocacy.com/contact/
ReplyDeleteI am going to try interferon. It is naturally produced in the body and research has shown that it tackles the Jak2 mutation as well and lesen its effect. So I like that idea. Hydroxycarbamide just tackles the proliferation. The main side effect in some people is that you get feverish- this is akin to te body producing heat to tackle invaders.
ReplyDeleteEva, thanks for weighing in! Please keep us informed of how this works for you. Best wishes as you embark on the new regime.
ReplyDeleteHello, my name is Mary. I was diagnosed with a ET about three years ago. I am currently 46 years old, and during a annual check up with blood work they discovered my platelets were high. They did blood work for ET and also a bone marrow biopsy. Both test showed negative. But because my platelets continue to rise up (pass 900) they diagnosed I had the condition anyways. I was one of the rare ones that test negative even when I have the condition. I am takeing Hydrea, which is currently working well. My hematologist explain to me that there is a chance of leukemia 10 years down the road. Not sure because of the ET or the Hydrea. Not what I wanted to hear. I still have Children in school. In the 10 years time my youngest will be in his second year of collage. Not enough time!!! Maybe I will be one of the lucky one to dodge cancer I pray. It is so frustrating when every test show negative. I have made them run every test I can think of including checking for different types of cancer to see if the ET is a secondary condition. So far everything is neagative. Good news but frustrating that there is no definite cause. Hard to fight something if you don't know what you are fighting. At the moment I guess except I have ET and taking my Hydrea daily. Wondering if anyone else was diagnosed like me when the test are negative. Except for the ET I am perfectly healthy with no other condition. ( and little high cholesterol but the doctor said no need for meds because my good cholesterol was high ). Trying to stay positive but sometimes hard when you have children and feel like you have an expiration date.
ReplyDeleteHi, Mary, and welcome. Yes, ET is mysterious and still poorly understood. A couple of things I would do:
Delete1. If your doctor has not checked you for the genetic markers for ET, ask him to test you for JAK2, CALR, or MPL. Some people are negative for all three, but testing positive for any of them will help confirm your diagnosis.
2. Ask your doctor why he thinks you might develop leukemia. It is thought by some that Hydrea can increase your risk of leukemia later in, but no studies have shown that. If you are worried about leukemia risks with Hydrea, you could ask your doctor if Agrylin (anagrelide) would be an alternative. This drug has fewer side effects, though it may not work as well as Hydrea for some people.
Do stay positive. The most common side effect with this disease is developing a blood clot. The Hydrea reduces that risk a lot. Do the things that reduce other clot risks. Get exercise, keep your weight down, don't invite Type II diabetes with a lot of sugar, and reduce your salt to keep your blood pressure normal.
Ask your doctor what you can do to stay as healthy as you can aside from the ET, and you will be there for your kids for many decades!
Thank you, I think they have ran all the test in me. They did blood work, an untrasound to check for enlarge spleen and bone marrow biopsy to check for gene mutation. Everything came back normal. Not sure what CALR or MPL is. I guess I was just overwhelmed with it all at the time. I was told by my hematologist that Hydrea was the drug with least side effects and tolerated well by most people.
DeleteI am so glad to have found this site. I already feel better knowing there are other people out there I can reach out to that is going through the same thing and surviving. I have keep it in for so long, no one really understands especially counting down my dooms day. I feel much relief knowing there is no definite studies with Hydrea indicating leukemia is a possibility. Do you know if anyone who developed leukemia that has ET?
I found your Facebook page, I can not tell you how happy and comforting it feels to be conntected with you and other people with the same condition. I am sure I will have many questions in the future. You are a blessing.
Mary- my haematologist told me about a recent Scandinavian study where it was discovered that there was not an increase in risk of leukaemia in people taking hydroxyurea long term. This was in response to previous studies which said there was small risk of leukaemia with hydroxyurea. So if I were you I would not worry about it.
ReplyDeleteThank you so much Eva!! I feel like I can breathe alitlle.
DeleteFor starters, if you are not talking with a Hematologist that is familiar with ET, then that is who you need to be discussing your condition with. I'm not clear on your diagnosis being negative for ET. I had tests to rule out other conditions, so that it was down to ET, which means they have no way of knowing what the origin of your high platelet count. Essential in front of the other word means that. I never had the bone marrow test and my platelets have always responded well to medication, so everything has been very routine for me. Mine was also discovered through a routine exam, with my platelet count showing up on my CBC as extremelly high. At that point I went to a hematologist, as this is their field. I've had it for 16 years, and have had very few side effects. But what's extraordinary about what you are saying is that I have had 5 different hematologists over the years, either because of my leaving the area, or them leaving the practice, and every single one told me I would live a normal life span. I am now almost 68, and my doctor still tells me that. It seems that either you are not clear on what your doctor is telling you or maybe you misunderstood something, or there is more information about your condition that you haven't shared here. Is that anyone else's take or can any of you shed more light on this for Mary? I know I initially panicked because cancer was mentioned and the possibility(very very slight) that it could lead to leukemia, and having to go to a cancer doctor scared the heck out of me. It took awhile for me to understand about it and not panic. I pray that that is all this is for you, Mary!!
ReplyDeleteGrace, thanks for chiming in. Some people are "triple negative," in that they have none of the three genetic markers of ET, but the bone marrow biopsy shows the right mix of things. Yes, I was told that I could live a normal life span if I kept my platelet counts low and reduced my other risks for heart disease and stroke. It may be good for people to see ET as one of many stroke risk factors as they age. Control your ET, get exercise to help your circulation, keep your weight within normal boundaries, and watch cholesterol and blood pressure. About half the people with ET are still alive 20 years after their diagnoses.
DeleteKatherine, did you have your hip replacement? I had a bilateral hip replacement with a ET and a high platelet count. I was taking a low dose aspirin per day. I took Xarelto (blood thinner) for 6 weeks post op to avoid blood clots. My blood count went way down with blood loss during the operation, but returned to high levels in time. I had my operation at the Hospital for Special Surgery in NYC and the care was superb. With the best doctors and hospital, you have no need to worry.
ReplyDeletewhere I can buy the cheapest ANAGRELIDE 5mg
ReplyDeleteIf you are in the U.S., this site allows.you to compare the.cost of drugs from.different pharmacies: https://goodrx.com
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