Comments for Kanetta Blog

Comment on Thrombocythemia – a Rare Blood Disorder by kanettac

kanettac — Wed, 08 Sep 2010 14:20:18 +0000

Dear Laura, please, please try not to worry about all this. I believe stress plays a part in this. Just listen to what your doctor tells you to do. Most Et patients have numbers much higher than you. When I was diagnosed mine were over a million. I was diagnosed with ET about 5 years ago and today, I don’t really think about it. The bone marrow test really isn’t that bad. You will be numbed up for it. My husband was in the room and held my hand when I had mine. You have a new baby which makes coping a little more difficult. Take care, Kanetta

Comment on Thrombocythemia – a Rare Blood Disorder by Laura

Laura — Tue, 07 Sep 2010 04:13:33 +0000

I was searching ET and came across this page and have a glimmer of hope. I haven’t been technically diagnosed with ET yet, but my oncologist says that the chances are highly likely. I had my little girl in February and in May I started having nosebleeds and sporadic bruises all over my body. At first I just thought I was anemic and started taking iron again, but when it didn’t get better but got worse, I went to a doctor. My platelet count initially was 498, then it went up less than a month’s span to around 527. My PCP referred me to oncology, and after hearing my symptoms, the first thing my oncologist said was “ET”. Although I know the cause is not known, blood disorders run rampant thru my family (S protein deficiency, Leukemia, Chronic Anemia, Low-platelets). I am currently awaiting my next appointment to discuss my blood results. My oncologist said pending the results, I may have to have a bone marrow aspiration and biopsy. I’ve been stressed out to the maximum, worrying about this. I’m only 23, with a new baby, and a husband deployed and to think that I have a chronic disease just worries me. I need to do more research on ET, but is hard as little is out there. I’m trying to stay positive and if I have the definitive diagnosis, realize that it’s not a death sentence.

Comment on Thrombocythemia – a Rare Blood Disorder by Angela

Angela — Tue, 17 Aug 2010 00:09:40 +0000

Hello,

Dennis — it is technically a form of cancer because cell are mutating in a non-conventional way but it’s not a the type of cancer that most people associate dying with. It can progress into acute leukemia over time, which is very serious, but it is also very treatable with a high survival rate.

I’m 27 and I’ve just been diagnosed with ET although I’ve probably had it for at least 3 years — looking at past lab results.. I’ve been put on baby aspirin because my count isn’t at a critical place yet. I was told that I had a MPD (myeloproliferative disorder) but they couldn’t tell which one until they got the results of my bone marrow biopsy — which took two weeks. I think the two weeks I spent worrying about what I had were the worst of my life…

ET isn’t a positive thing, but Idiopathic myelofibrosis is ten times worse… and it’s in the same group of disorders.

Try to keep on the sunny-side of life.

Comment on Thrombocythemia – a Rare Blood Disorder by Dorothy

Dorothy — Tue, 27 Jul 2010 10:16:14 +0000

Victoria – Since being diagnosed nearly 2 years ago when I was 47, I’ve had to accept that I’m not able to do the things to the extent I’ve was able to do in the past. I still walk/climb mountains but for instance I don’t play Badminton any more but I more or less lead a normal life. Sometimes, however, ‘pushing the boat out’ can lead to a detrimental effect of fatigue/tiredness and for me, a more than normal number of migraines for some weeks after! Same goes for work and I’ve ended up working from home which has helped me pull in the reins a little. It is so easy get to involved with work things to the point that one has no more energy left for anything else. I’m computer based so it works for me and the company I work for but may not for you depending what you do. I can only suggest to get some quality of life you need to consider altering something to help you live a normal life within the restrictions that the condition and medication seems to cause. Eat lots of good healthy immune system boosting food. Hope this helps.

Comment on Thrombocythemia – a Rare Blood Disorder by Victoria, London

Victoria, London — Wed, 14 Jul 2010 14:54:27 +0000

So helpful to read everything on this page. I was diagnosed about a year ago with counts ranging between 600 and 1250 and currently at 900. I have been coping ok until recent months apart from tiredness which is seriously starting to affect me. I am 28 and have a very intensive job. Can anyone help me understand, will I be well enough to carry on working 10 hour days? I have been in bed for the last five days with fatigue, dizziness, numbness in arms and vision problems and am thinking perhaps I need to somehow adjust my job. How has ET affected anyone’s job day to day? Many thanks for your help

Comment on Thrombocythemia – a Rare Blood Disorder by Susan

Susan — Tue, 13 Jul 2010 19:30:52 +0000

Dennis,

The shortness of breath could be a side effect of the medication you are taking. When I was first diagnosed with ET, I was directed to take .5mg of Anagrelide, 4 times each day. It caused me to struggle for every breath, which was very alarming. Even after reducing the med to 3 times a day, I continued to experience shortness of breath. When the Anagrelide failed to control my platlet count, I was switched to 500mg of Hydrea, 2 times daily. I did have some side effects from the Hydrea, but my shortness of breath ended! I hope you find comfort in knowing you are not alone with this “strange” medical condition …

Susan in NC

Comment on Thrombocythemia – a Rare Blood Disorder by Dennis L.

Dennis L. — Sun, 11 Jul 2010 16:13:54 +0000

Went to the hospital on Friday for shortness of breath and they did some blood tests among other tests. My blood platelets were down to 700k. The doctor says that platelets go up and down all the time but to see that it is not going higher makes me feel better.

Comment on Thrombocythemia – a Rare Blood Disorder by Susan

Susan — Wed, 16 Jun 2010 15:11:51 +0000

Disappointing oncologist visit for me yesterday … my count had jumped 115,000 points. Even though I’m taking 1,000 mg. hydrea/daily, my counts continue to yo-yo. Thank goodness my doctor is always upbeat …

Comment on Thrombocythemia – a Rare Blood Disorder by Leigh Mendoza

Leigh Mendoza — Wed, 09 Jun 2010 02:48:19 +0000

Hi Dennis, I’ts funny that you say that, i’ve been on Hydrea for about 4 yrs. now and my platetet count was just over a million. 1500 mils aday. I wonder why that is?

Comment on Thrombocythemia – a Rare Blood Disorder by Dennis L.

Dennis L. — Tue, 18 May 2010 00:10:11 +0000

I am wondering if anyone out there knows if ET is actually a form of cancer (similar to leukemic types)? The fact that this disease is treated by oncologists seems to make me think so.