Essential Thrombocythemia

Hi

I have been taken Hydrea for more than 3 years and just recently platelet counts have increased alarmingly. My doctor is suggesting several other drugs, all of which are know to have quite alarming side-effects.

Has anyone tried Mobcitin? I checked the manufacturers' website: www.mobcitin.com. They claim it is a 'cure' for ET.

never heard of it. Although I just got diagnosed with this mpd. :( I am really sad at times, but know that I have to be strong. I am 24 years old. Male. Way too young for this. Would love to get a BMT, I'll try my hardest.

Great to find someone else that I can talk to about this. Doctor said I should take anagrelide. Haven't started yet. I am afraid that it will switch to myelofibrosis later. What do you think?

On 2/18/2008 iraqvet08 wrote:

never heard of it. Although I just got diagnosed with this mpd. :( I am really sad at times, but know that I have to be strong. I am 24 years old. Male. Way too young for this. Would love to get a BMT, I'll try my hardest.

Great to find someone else that I can talk to about this. Doctor said I should take anagrelide. Haven't started yet. I am afraid that it will switch to myelofibrosis later. What do you think?

Agree, you are way to young to have this mpd and it is all the more alarming when there appears to be so little information and support out there. I was almost pressurised into taking Anagralide but decided the risks of myelofibrosis was too great to ignore. I recently changed doctors and now feel the advice I'm getting is more informed and sympathetic, so I will persevere with hydroxycarbimide and its side effects for a while longer.

I don't know whether you are in the USA or UK, but you may like to access an mpd support group website which I have found helpful and reassuring, www.mpd-support.co.uk. Its run by the Dept of Haematology at St Thomas' Hospital in London. Reading their October 2007 newsletter may be of some comfort - it helps just knowing there are others who feel equally isolated following diagnosis of so rare a condition. 

I wish you well 

Hey there,

I am actually located in the U.S. The more I am reading, the more I also freak out. I have work, a wonderful girlfriend, and have many babies to make. Thinking about maybe sticking to an aspirin for a month or two. Then starting Hydrea. What are your side-effects from this medicine? I guess I'm in the same boat, wanting to prevent fibrosis. BMT are easier said than done. Researched it and the mortality rate is pretty high. (10%) ( city of hope dott kom ) I guess I'll just stick to the meds and use that as last resort. In any case, praying hard for everyone affected by an mpd or other illness.

Shaun

On 2/19/2008 iraqvet08 wrote:

Hey there,

I am actually located in the U.S. The more I am reading, the more I also freak out. I have work, a wonderful girlfriend, and have many babies to make. Thinking about maybe sticking to an aspirin for a month or two. Then starting Hydrea. What are your side-effects from this medicine? I guess I'm in the same boat, wanting to prevent fibrosis. BMT are easier said than done. Researched it and the mortality rate is pretty high. (10%) ( city of hope dott kom ) I guess I'll just stick to the meds and use that as last resort. In any case, praying hard for everyone affected by an mpd or other illness.

Shaun

Hello Shaun

I was diagnosed in 2006. Was fairly laid back about it all for nearly a year and then, after several long-haul flights to the States and Australia, got back to the UK and my platelet count had risen alarmingly. Got no explanation and was advised to increase hydrea to 2000mg a day.

I do not want to alarm you further. We are all different and react differently to medication. Many of the symptoms I was experiencing seemed more of a nuisance and irritating than of serious concern. I made excuses for them (for example I blamed my itchy skin on a change of shower gel). I now know better.  My side effects included influenza symptoms (aching joints, sore throat and stuffy nose) nausea, diarrhoea, headaches. I also developed a hoarse voice and was constantly trying to clear my throat. I have dry eyes and vivid dreams. Indigestion was put down to aspirin.

My new doctor has been very patient, more understanding and willing to talk through all of the above side effects to see if they can be reduced or eliminated. I now split the dose of hydrea, taking half at breakfast and half 5hrs later. I take 75mg soluble aspirin 1 hr after the 2nd dose of hydrea. He has also advised me to take Ranitidine 150mg to lessen the adverse effects of prolonged use of aspirin. I have been on this new regime for 3 weeks and feel much better.

Do access www.mpd-support.co.uk. The editor of the newletter is Ann-Marie Jahn. She is young, like you, and a fellow sufferer. She wrote to me after I joined (via the website) and I believe she is only taking aspirin at this stage. I gather this support group gets emails from the US and Canada because it is such a good source of information on research, drug trials, new treatments and understanding of this mysterious illness. I think the mortality rate you quote is for newly diagnosed patients over the age of 65years. 

I hope you can find the strength to be optimistic and live life to the full.

Manuela

Manuela,

Thank you for your response. I appreciate you sharing all of your experiences with me. Have you contemplated the use of interferon? Some people actually go into remission.

Would love to gather all sorts of resources for this illness and post a website with different recipes that would help your body with detoxification (hydroxyurea) and eating healthy etc.

:) It's late there

Shaun

Manuela,

Great website! Love it! Thanks for the link.

em pee dee dash support dot co dot uk

On 2/19/2008 iraqvet08 wrote:

Manuela,

Thank you for your response. I appreciate you sharing all of your experiences with me. Have you contemplated the use of interferon? Some people actually go into remission.

Would love to gather all sorts of resources for this illness and post a website with different recipes that would help your body with detoxification (hydroxyurea) and eating healthy etc.

:) It's late there

Shaun

 

Yes, discussed Interferon Alpha with consultant on February 5th. His view was that this was mainly prescribed for pregnant women with this condition. 

I found a US website by just googling 'Hydroxyrea and Anagralide' which compared trials. Apparently, H + Aspirin was better tolerated by more patients than A. In the UK trials on A were stopped and fewer newly diagnosed patients are now being prescribed A.

Am really interested in alternatives, hence my trying to find out whether anyone has actually managed to get Mobcitin (after ordering and paying for it). Found reference to the homeopathic supplier on Ripoff.com and decided this one was probably not genuine - well anything that is claimed to be a cure would surely have been grabbed with both hands and ET would be no more!!!

M 

Shaun, like you, I was diagnosed young. It was a month before my 21st birthday. I had ruptured a disc in my spine and it was routine pre-op tests that alerted my surgeon to a problem. They red-flagged my chart, my surgery was postponed, and I found myself having a bone marrow biopsy instead. I was diagnosed at just over 2 million platelets per microliter, and now I average around 1-1.5 million. Now I'm about to turn 31, and I've had 10 years to absorb my diagnosis. I'm currently on asprin therapy, but after all this time it's taking a toll on my stomach. At the time of my diagnosis, my hem-onc thought it wise to hold off as long as possible on meds, and I'm thankful for that decision. I've read a lot about the risks and side effects of these drugs, and they sound worse than the disease itself. The only other treatment I've had was a short term fix. I had plateletpheresis prior to my surgery to reduce the risk of a bleeding episode during surgery. In the beginning, I struggled with my diagnosis and the feeling of isolation. Other than family, I found that people around me started coming around less and less, then not at all. The best relationship I formed during this time with with my oncologist. That is also the best advice I can offer to newly diagnosed ET patients. Don't be afraid to ask questions and take an active role in your treatment.  I see by your member name that you are a Veteran, so I know you have the strength and courage you'll need to get you through this. I also sincerely thank you for your service, because it's people like YOU who inspire me to be brave. I lost my Dad a few years ago to lung cancer. He was a Vietnam Veteran, and we discovered his cancer was caused by exposure to Agent Orange. One of the last things he said to me was that he was glad it was him and not me that was dying. When I think of people like him who battle to cling to life, my cancer doesn't seem to bad. I wish you all the best and hope that I can help you cope a little better when you see how long I've been thriving with this disease. I plan on getting really, really old and demanding free coffee at McDonalds because I'm a senior citizen. lol Feel free to e-mail me anytime if you need to vent or just want to chat with someone who has "been there, done that." Good luck!

 Allison

Hahaha you are too funny. McDonalds :) Me too! I wanna be right there with you!

Do you think there is a bigger chance of it being left untreated for it to convert to myeleofibrosis?

That's what I'm really scared about. I'm thinking about getting a BMB every other year or so.

Would hate to take hydroxyurea... hopefully in ten years from now... or actually tomorrow, they will come out with a cure for this. Maybe perhaps a medicine that will not have the drastic symptoms as the ones existent today.

Great to hear you are doing well. All I know is that I will be living my life to fullest, with no 2nd thoughts about danger. I will die of something other than this.... guaranteed.

Sky diving is on the list. Bungee, pilots license, rock climbing, mountain biking, polar bear wrestling, alligator wrestling. Perhaps I'll be the next steve irwin, survivor man all in one. ;)

Hope to hear from you soon! I'm thankful for your dad and his service to our wonderful country.

Airborne!