Essential Thrombocythemia and Acceptance.
June 23rd, 2009 . by kanettac
It has been a while since I posted but it is not because I didn’t want to do it. Sometimes I feel that this disease is always hovering over my head and all I want to do is just get away from it and not talk about it at all. That works until I have my appointment with my doctor and all he does is talk about it. Then, I come crashing back to reality. My last reality check was that my platelet count has been increasing just a few points each month and now they are up to 804. MY doctor said he will probably have to increase my dosage the next time I see him which will be in about 2 more months.
Also, since my last posting my husband was diagnosed with prostate cancer. He had surgery on June 2, 2009 and now is doing very well. He can’t do all the things at the moment that he likes to do such as play tennis and riding his bike but he is doing so good. Thank God! He’s walking a lot and he goes over to the tennis court to hang out with his friends. I think his prognosis is very good. I am not worrying about him as much as I was. He said he was starting back playing tennis next week!
This posting is a little special because I am going to talk about some of the many letters that I have received. Some have important questions and I don’t have the answers. However, some of you may know exactly what they are talking about.
Kristy wants to know if anyone has ever gotten pregnant and had ET. Was it difficult to conceive and was the baby healthy? Rachel has answered that question already. She said she had two healthy babies that the doctors said she would never have. That is a wonderful success story but as a word of caution, check with your doctor first. Life is such a very precious thing.
Wendy is on interferon and gives the shots to herself. She said she lost a lot of her hair when she started taking the interferon. But after her platelet count went down, her ET symptoms disappeared and she got her hair back. She is trying to stay positive and enjoying life day by day. Wendy feels that stress can play a large part in raising the level of platelets. Because when she gets stressed her platelets go up. I feel that way also. Especially with what I have been through with my husbands illness.
Stacey wants to know if anyone has put on weight while using Hydrea. I, Kanetta have put on weight but I think it’s because I’m too fond of cookies and cakes. However, it would be appreciated if someone would let us know about weight gain and Hydrea.
Dorothy wants to know if anyone suffers from migraine headaches like her. She said she has at least one migraine every 4 to 5 days. She has also suffered from hair loss.
Wendy said that she thinks her ET was a result of untreated anemia. She said that someone told her that if your blood doesn’t have enough iron that your system will start over producing platelets. She has also suffered from hair loss.
Blake says that he sometimes experiences a skin rash (tiny red flat dots beneath the skin on lower legs and ankles) with the Hydrea.
To all the ET sufferers, these are just some of the comments that I have received. On each posting there is a button that says comments. Please read the comments because each comment holds valuable information about this disease. There is a pattern developing and we need to put it all together to find a CURE! Take care and God bless each and everyone of you. Until the next time I post, Kanetta
Migraines are very common with ET. Usually, if you get your platelets down the headaches go away. I have to keep mine under 300 in order to not be symptomatic.
Hi. I was diagnosed with ET in Nov. 2007. Have been on as many as 4 tablets daily of anagrelide; however, it do little to control my counts. Was switched to 1 500mg. capsul of hydrea daily in May, but my count soared 400,000 in two weeks, taking me above 1 million. My dosage was increased to 2/daily and that created a 200,000 drop. Today, my count showed an increase of 30,000 in 3 weeks. My hematologist and I agreed that my hydrea will probably be increased to 3/daily within the next 3 weeks. For me, the side effects of both medicines have been “not so great” … severe headaches, stomach aches, brusing and, with anagrelide, extreme shortness of breath. NO weight gain for me, but no weight loss either despite the fact that I have lost my appetite. I, too, feel as though I am on a roller coaster … most people just don’t understand what I’m discussing. A few close friends have search the internet and are shocked at what they have read and how very little there is out there. Thanks for this website … I don’t feel alone anymore! Susan
Kanetta, thank you so much for starting this blog. There are other support sites online but it’s difficult to communicate and keep in touch with people on those sites. I am 37 and found out I have ET a couple of years ago. I had to have my thyroid removed and when I got my blood tested before the surgery my platelets were pretty high. They almost did not do the surgery. After the surgery I had the have my blood tested quite a bit to check to make sure my thyroid medicine was the right amount for me.
Each time they tested my blood the platelets were getting higher and higher. At one point they were over a million. I was referred to a Hem/Onc and after a bone marrow biopsy (Ouch!!) he diagnosed me with ET. (I always think “ET, go home”. I don’t know where it came from and why it took residence in my body, but I certainly wish it would go home!) At the time of the diagnosis I was very single and childless but still hopeful that I would one day be a Mother. So my main concern was having to take meds that could cause birth defects. I asked my Dr a lot of questions to determine what my options were, being a relatively young woman with this disease. At one point he said, “Carla, you are 36 years old and not even married yet.”. He is a well respected Dr but has a rep for having a poor bedside manner. When I left the office that day I got in my car and the flood gates opened. I cried for about two days. When those two days were over I accepted my fate and I haven’t looked back or shed one more tear about it. The good thing about this is that it opened my mind to dating men who didn’t want children. I’ve since met and married a wonderful man who has two adult children and is looking forward to the next phase of his life and doing all those things you can not do when you have little ones. He said he will make sure I have a happy life even without having a child. And now grandchildren are still a possibility!!! When God closes a door he always opens a window.
I’ve been having regular appointments with my Dr. As of today, I am on 1000 mg of Hydrea one day and 1500 the next. I am tired all the time and it’s frustrating for me and my loved ones because no one seems to really understand. They just are upset when I can not do all the things I was once able to do without getting so tired. I still consider myself lucky that I was diagnosed and treated before I had an episode. We all know how damaging a stroke can be.
There were a few things that you said that I can certainly relate to, one being the flickering lights in your vision. “Broken glass” is a good way to describe it. I was saying it looked like a segmented snake, lol. I had no idea that was a symptom of the disease. How did you find that out?? I also found it interesting that you said you thought stress was a factor. I’ve had an anxiety disorder ever since I was 18. I am currently taking meds for it but I know I do not handle stress well at all. I really make it a priority in my life to limit the amount of stress. I mean, life is for the living and there is always a certain amount of stress, but I eliminate all that is unnecessary.
Again, thank you for sharing your story and I really hope to keep in touch with you and all the others who visit your blog.
Carla
I would like to know if you or any other ET patients have experienced blood vessel contrictions? I had my first encounter and it was more than a little frightening … it covered both hands. My hematologist/oncologist said it could be an isolated event or I could have another occurence. Currently, I’m on 2 doses/daily of hydrea 500mg and my count has begun to increase again … currently in the mid-800. My oncologist has indicated that we will probably increase to 3 doses/daily during the first week of August. Since diagnosed in 2007 with a count of 640 my count has risen to as much as 1200, but never lower than 780.
To Kanetta and other ET friends,
I just had to share the good news. Yesterday, for the first time in 19 months, my platlet count dropped below 600 … 579 to be exact. I don’t know who was more excited, my oncologist or me … maybe it was a toss-up. I’m just hoping and praying that the 2 capsules of 500mg Hydrea daily will hold this count. I’ll see my oncologist again in three weeks … let’s hope for another good outcome.
Would like to know how others are doing.
Susan
I also suffer migraines with occular auras fairly regularly and headaches that sometimes go on for 5 days or more. I am not on any medications whatsoever and I am taking all natural and herbal supplements. My platelets when diagnosed about 2 years ago were over 800 and are now down to about 630. I also experience numbness in my limbs, especially fingers and legs, heart palpitations, and daily muscle pain with or without exercise. This seems to be the case with everyone whether or not they take the medications or the baby asprin. I’ll let you know how my treatment fairs in contrast to western medicine.
Yesterday, I was excited with the results of my bloodwork … as the result of the 1,000 mg. of hydrea each day, my counts are holding at 538,000. However, I am concerned that (for some unknown reason) my right foot has been going numb. I am anxious to know if any other ET patients have experienced the same problem.
Thanks for any feedback.
Susan in NC
I’m 23 and I’m one of the apparently rare people who have ET during childhood.Since I was 2 yo, i went to the Hem/Onc with counts like 2,000,000. It never caused much trouble to me besides headaches once in a while. When I turned 12, I went on a walk in the Miami heat and forgot to bring some water. Afterward, I got dehydrated and together with my 2,000,000 PLT count suffered a huge three day migraine ending with blindness and stroke. Blind and incoherent, doctors told my parents that if I stayed in this state for another 48 hrs, that it would be permanent. Three days later, I wake up and see and remember my beautiful family.Right next me in intensive care, was a 15 year old boy who had heatstroke while playing hockey with his dad. He had lost his motor skills, memory, and had to start from zero. I think that my recovery was nothing short of a miracle. I know that God healed me and continues to uphold me, come what may.
) traveling around Europe and Africa with my family. My counts have ranged from 300-800.
For the last 12 years, I have been on Agrylin and a baby aspirin a day. The headaches stopped and I had a great adolescence (as great as they get
In 2007, I got married and in 2008 we had our son, Aaron.
Now, I continue this medication because it’s been working so far without major side effects. In the past four years, I started having migraines with aura. This has been very different from the simple yet frequent headaches I had prior to taking Agrylin. Since 2006, I started having the aura migraines and it scared me quite a bit when they happened (once or twice a month) But recently, it’s been slightly comforting to know that it’s not connected to my high PLT count and that it’s probably just a side effect of Agrylin.
Since I seem to be doomed to a life on Agylin (or any other PLT reducing meds) you can understand my concerns about long term effects of Agrylin and especially some of the alternatives that Melissa is using to reduce PLT count.
Any suggestions or feedback are very welcome. Hope my little story is encouraging/enlightening to an ET person out there.
-Sincerely,
Daniel
I was diagnosed with ET almost 2 yrs ago, I tested positive for the JAK2 mutation. I take a baby aspirin daily and my counts are between 600 – 700. I am very active, love to run, bike, and swim. Recently I have noticed my right lower leg and numbness. Susan, it sounds like you experienced this as well. Is this something that went away or has it been continuous? The only other symptom I have had is the headaches.It is nice to have a website to share experiences.
Hello all
Just hopping to hear for a miracle that will stop me feeling so depress and tired all the time .
Sorry i am not very good in expressing my feelings on [paper] i am more of a face to face person, lately iam nauseas all the time.I agree it is nice to share experiences.
Kanetta, thank you so much for starting this blog. There are other support sites online but it’s difficult to communicate and keep in touch with people on those sites. I am 37 and found out I have ET a couple of years ago. I had to have my thyroid removed and when I got my blood tested before the surgery my platelets were pretty high. They almost did not do the surgery. After the surgery I had the have my blood tested quite a bit to check to make sure my thyroid medicine was the right amount for me.Each time they tested my blood the platelets were getting higher and higher. At one point they were over a million. I was referred to a Hem/Onc and after a bone marrow biopsy (Ouch!!) he diagnosed me with ET. (I always think “ET, go home”. I don’t know where it came from and why it took residence in my body, but I certainly wish it would go home!) At the time of the diagnosis I was very single and childless but still hopeful that I would one day be a Mother. So my main concern was having to take meds that could cause birth defects. I asked my Dr a lot of questions to determine what my options were, being a relatively young woman with this disease. At one point he said, “Carla, you are 36 years old and not even married yet.”. He is a well respected Dr but has a rep for having a poor bedside manner. When I left the office that day I got in my car and the flood gates opened. I cried for about two days. When those two days were over I accepted my fate and I haven’t looked back or shed one more tear about it. The good thing about this is that it opened my mind to dating men who didn’t want children. I’ve since met and married a wonderful man who has two adult children and is looking forward to the next phase of his life and doing all those things you can not do when you have little ones. He said he will make sure I have a happy life even without having a child. And now grandchildren are still a possibility!!! When God closes a door he always opens a window.I’ve been having regular appointments with my Dr. As of today, I am on 1000 mg of Hydrea one day and 1500 the next. I am tired all the time and it’s frustrating for me and my loved ones because no one seems to really understand. They just are upset when I can not do all the things I was once able to do without getting so tired. I still consider myself lucky that I was diagnosed and treated before I had an episode. We all know how damaging a stroke can be.There were a few things that you said that I can certainly relate to, one being the flickering lights in your vision. “Broken glass” is a good way to describe it. I was saying it looked like a segmented snake, lol. I had no idea that was a symptom of the disease. How did you find that out?? I also found it interesting that you said you thought stress was a factor. I’ve had an anxiety disorder ever since I was 18. I am currently taking meds for it but I know I do not handle stress well at all. I really make it a priority in my life to limit the amount of stress. I mean, life is for the living and there is always a certain amount of stress, but I eliminate all that is unnecessary.Again, thank you for sharing your story and I really hope to keep in touch with you and all the others who visit your blog.
+1
I was diagnosed with ET in 2003 from results of a routine blood test in pregnancy (3rd child). Looking back at previous blood tests, my doctor confirmed that I had had the condition for at least 7 years prior to that test, but it had been overlooked by my previos doctor.
I take aspirin daily but have no other medication as yet- my count was up over 700 last year and the consultant warned me that I would be put on interferon injections 3x per week if the count remained this high. Fortunately at my next consultation, my count had reduced to under 600, which I can only put down to having been on holiday just before and therefore under less stress.
I had no problems falling pregnant with my 3 children, infact the 3rd was a suprise as I had a coil at the time!
Is there anyone out there who can tell me how life is on Interferon, as I am sure I will end up on it at some point?
Jenny,
You said a “consultant” warned you that you could be put on interferon injections if your counts remain high. Although, I am no expert, I would recommend that you see an hematologist/oncologist (H/O), who is an expert in the field of essential thrombocythemia. Have you had a bone marrow biopsy? It’s the only true way to confirm an ET diagnosis … not painful, just some soreness.
I was diagnosed with ET 3 1/2 years ago and am taking hydrea 2Xdaily. Although, my counts are rising again, my H/O has never recommended interferon, but has discussed increased my hydrea to 3Xdaily.
Keep us up-to-date on your progress.
Susan in NC
Hi Susan,
I am in the UK so perhaps medical terms are slightly different here! My consultant is a Specialist Haematologist, and I have had ET confirmed with a bone marrow biopsy. He said that he would rather use interferon because of my relatively young age of 42, but I am not altogether sure of his reasoning.
For the last seven years, I have just been taking low dose aspirin, which I hope will be the case for some time yet!
Hi Susan,
I was diagnosed with ET a few weeks ago at age 16. In order for me to be asymptomatic, i have to be below 300. The highest I’ve ever gotten was a few away from 1 million. My face would swell up, i had a headache for a good 5 months straight, I had a mini stroke because my blood was too thick, I would lose the feeling in my face, hands, arms, and legs, I would constantly lose balance, I’d get extremely confused all of the time. I thought it was th worse thing ever. They thought I had MS, so they did a spinal tap. Thankfully, I didn’t have that! So, i had to get a bone marrow biopsy and aspiration done. That confirmed that I had ET since my JAK2 came back positive. Right now, I am taking amatriptyline, anagrelide, a baby aspirin, and also an iron supplement because I’m anemic. After reading your pose, along with everyone else’s, it made me accept it better. Thank you all and good luck!