CancerCompass message board discussion started by Reddisa on 1/21/2008 http://www.cancercompass.com/message-board/message/all,19940,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ HiI 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. Reddisa Mon, 21 Jan 2008 00:00:00 GMT 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? iraqvet08 Mon, 18 Feb 2008 00:00:00 GMT  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   Reddisa Tue, 19 Feb 2008 00:00:00 GMT 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 iraqvet08 Tue, 19 Feb 2008 00:00:00 GMT  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.ShaunHello ShaunI 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  Reddisa Tue, 19 Feb 2008 00:00:00 GMT 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  iraqvet08 Tue, 19 Feb 2008 00:00:00 GMT Manuela,Great website! Love it! Thanks for the link.em pee dee dash support dot co dot uk iraqvet08 Tue, 19 Feb 2008 00:00:00 GMT  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   Reddisa Tue, 19 Feb 2008 00:00:00 GMT 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--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- ghostgirl1977 Thu, 21 Feb 2008 00:00:00 GMT 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! iraqvet08 Thu, 21 Feb 2008 00:00:00 GMT  On 1/21/2008 Reddisa wrote:HiI 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.  sunshine47 Thu, 28 Feb 2008 00:00:00 GMT Hi I have been recently diagnosed with essential thrombocytosis.  My count is normal high 520, however, I go for a bone marrow biopsy on March 20 and I am really nervous.  Especially since I won't be put under.  However, I have been doing research and a new drug Gleevec has some good remissions even with leukemia.  THey use it for blood disorders.  However, there are side effects, one of which is congestive heart failure but it is rare. I will pray for all of us.  sunshine47 Thu, 28 Feb 2008 00:00:00 GMT  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?HI...I am a 36 year old Male with Diagnosis of ET.  I have had a bone marrow biopsy which was normal (no negative issues) and have had many other tests that are also normal with no issues.  Doctors have no idea what is causing my platelets to be around 750,000.  I was diagnosed in July of 2007 and am only on a baby aspirin at this time as my doctor does not want me to be on Hydrea or other drugs until platelets reach 1 million (which I hope they do not).  Hope this helps you since you and I are for sure in the minority population for this disease being male and younger than 60.  I will have blood taken once a quarter to monitor for now.... tins720 Sat, 01 Mar 2008 00:00:00 GMT Natural agents that inhibit platelet aggregation include: Garlic (Allium), either fresh, lightly cooked or in tablets of aged garlic Chinese angelica (Angelica sinensis), found in natural food markets Aspirin Astragalus membranaceous (natural food markets) Bromelain and papain (enzymes from pineapples and papaya, respectively) Flavonoids (such as those found in re wine and tea) Panax ginseng (Korean or Asian ginseng) Rheum palmatum (a kind of rhubarb) Gingko biloba (available in many formulas) Just a reminder to anyone struggling to make sense of alternative therapies-check out The Moss Reports http://www.cancerdecisions.com/ Ralph Moss really does a great job and his reports are very helpful in navigating the landscapes that our mainstream medical system ignores. Good luck. Nutri-girl Sun, 02 Mar 2008 00:00:00 GMT Shaun, From all the information I've been given from my hem-onc, I'm really confident that right now the best treatment is no treatment. Again, if I were you, I'd schedule a meeting with my doc to just sit and discuss what ET is all about, because it just seems to me they didn't arm you with enough information. I think they have you more worried than you need to be. Everyone's treatment is different, but you do need to feel that you were a part of the decision so you have confidence you're doing the best thing to treat the disease. How often do you have follow up appointments? I have a CBC every other month and see the doctor every 6 months. The last thing I'd want is to have a BMB every year. lol I have a remarkably high tolerance for pain, but I'm definitely not going to raise my hand and volunteer for another one. :)  The bloodwork is sufficient enough because they can monitor my platelet count that way. My counts are all over the charts at times. I've gone as high as 2.5 million, and as low as 890,000. In fact, today is my big 6 month appointment, so I'm excited to see if my numbers have dropped since my last CBC. If you got to the leukemia & lymphoma society's website and do a search for essential thrombocythemia, you'll get a list of articles that will be helpful. There is one titled essential & primary thrombocythemia. (I think it's the very first article that comes up.) I've foud it to be very helpful in understanding my long-term prognosis. Good luck! Allison ghostgirl1977 Thu, 06 Mar 2008 00:00:00 GMT Good luck with your biopsy. I know they aren't a picnic, but it's just one of those things you have to do. I've definitely been through worse. If you call the doctor giving the test and tell them you have anxiety they can give you a sedative to take before the test. There will also be a nurse in the room with you to talk to you while the doctor performs the test. I'm one of those people who wants to know what they are doing to my body, so if I can't watch, I like to have the nurse tell me the steps the doctor is taking. If that isn't your cup of tea, the nurse will strike up a totally unrelated topic to take your mind off of the procedure. :)  My advice is to try to stay as still as possible, because then it will be over sooner. I was in the room about 30 minutes, but most of that was prepping for the test and relaxing afterward. Keep us posted on the results, and good luck!Allison ghostgirl1977 Thu, 06 Mar 2008 00:00:00 GMT My husband was diagnosed in 1991 with Thrombocythemia after a severecut to his hand.  He has been on Interferon shots, Anagylide, andHydrea.  The only thing that really works for him at getting theplatelett count down to a manageable range without totally knocking himout is the Hydrea.  The shots had a terrible side affect in thathe was just "out of it" as well as the Anagylide (sp).  The Hydreadoes have side effects that give him terrible mouth sores if he taketoo much, so he regulates the amount of drug that he takes.  Heknows that the doctors want the count down, but he actually losesweight from the mouth sores as he can't eat.  This has been goingon for some time time and now he is reading that this could be linkedto Agent Orange - he served in Vietnam two different times.  Haveyou heard anyting of this.  No one else in the family has this -don't know where it came from. frankaw Tue, 29 Apr 2008 00:00:00 GMT Unfortunately, I am all too aware of your husband's situation. My Dad was a Sgt. with the 9th Infantry Division in Vietnam, and we lost him to Agent Orange (cancer) in 2003. I was dignosed even before he was, but he had lung cancer from breathing it in, and it spread through his entire body before he was even diagnosed. By the time they found it, it was too late, and he only lived 6 weeks after his diagnosis. My entire life has become consumed with trying to help people like your husband so that another daughter doesn't have to go through the agony of losing her Dad this way. The first thing your husband needs to do is make sure the doctors who are treating him are aware that he is a Veteran and may have been exposed. Make sure they document this claim somewhere in his charts. (I would insist on watching the doctor add this to his notes if I were you.) You also want to gather his service records and contact the local VA. They will be able to determine if he was in an area where there was a high concentration of AO use. My Dad was stationed along to Mekong Delta, so to be quite candid, he never stood a chance. They used most of it trying to clear that entire area along the Delta. To make things worse, when the barrels that contained the AO were empty, they gave them to the bases to be used as makeshift latrines, grills, wash basins...you name it. I will tell you this will be quite a fight, so you may also want to contact a local American Legion or VVA to see if they have any liasons who help Vets file claims. As a child, I'm in a fight of my own because ET and similar cancers were at one point on the list of known illnesses linked to exposure. For some reason, and to my dismay, it was removed just 3 months prior to my diagnosis, otherwise they'd be resposible for covering my medical expenses, which are quickly draining my life savings. The VA will most likely want to review his records and give their own exams to document his illnesses in the AO registry. Whatever you do, DO NOT GIVE UP!!! My Dad's claim was approved the day before he passed, and had it been a day later, my Mom would have received NO ASSISTANCE from the govt. and would have lost everything on top of losing the love of her life. Please let me know if there is anything I can do to help. I'm marking this post to notify me of any replies so I will get back to you. Good luck, and please tell your husband that there is a military brat in Pa. that is very grateful for his service! AllisonOn 4/29/2008 frankaw wrote:This has been goingon for some time time and now he is reading that this could be linkedto Agent Orange - he served in Vietnam two different times.  Haveyou heard anyting of this.  No one else in the family has this -don't know where it came from.  ghostgirl1977 Thu, 08 May 2008 00:00:00 GMT Allison,<>Was pleasantly surprised to see your email.  Ihave heard nothing since I posted my plea and I thought maybe no onecared!  <> I am sure that we are in for quitea battle, but the fact is, my husband served 2 tours in Vietnam in theI Corp as a  MCB133 (construction batallion).  When I wentout and searched AO, the map that came up for Vietname said theheaviest concentrations of spraying was III Corps, followed by ICorps.  He did the plumbing,  and a/c and remembers thebarrels that you spoke about.  He has been going to the VA formedical help as we can't afford health insurance for him, since he isconsidered "high risk" with this disease.  The fact that they havetaken this disease off the list really bothers me as they must have atone time considered it a factor.  He goes to the VA on nextThursday for an examination regarding his claim.  I know he isconcerned how that will all work out.  I don't think we can provethat AO caused this, but can they claim it didn't?  No one else inthe family has it.  He has two sons, they are in their middle 30'sand they don't have it.  For right now, he is doingwell.  He regulates his own medication.  When he had goodhealth insurance, he was put on Interferon shots, Anagrilide, andHydrea.  The shots and Anagrilde were not good to him - he was sodruged, he didn't know where he was at at time.  He did to up tothe Mayo Clinic for quite some time.  He was on Anagrlide (sp)then and the doctor told him if he could get his platelett count downto a certain number, he wouldn't have to take more medicine.  Whenthe results came back, he platelett count had dropped so he shouldn'thave had to take more, but that doctor told him he needed to take theextra dose.  We found out later from the VA hospital that he nevershould have been on that medcine as he has stints in his heart AND thatdoctor was heading the study on the Anagrlide medicine.  How crazyis that - and it took a doctor from the VA to tell us that.  Soover the years, we have just learned to regulate the medicationourselves.  Different doctors come and go at the VA and they allwant to cure him, but truth be told, they can't help him with all themore medicine they want to give him - just makes him have large mouthsores and that is worse than the disease.If you have anysuggestions, we would greatly appreciate it.  We have spoken toour local VA office and they seem to want to help. Again, thanks for your response.  It's so nice to hear from someone out there who knows what we are going through.Jean & Frank Wood  frankaw Thu, 08 May 2008 00:00:00 GMT Jean & Frank, I'm glad that I found your post. It really does help to have someone who understands exactly what you are going through. Everyone here posting about ET has the disease in common, but how rare is it that two of us have Veterans linked to AO? Does he have any other medical issues that are related to exposure? My Dad also had diabetes. Everyone tried to tell us to avoid going to the VA, but they were the ones who were insisting something was wrong even after my Dad's regular doctor biopsied his lung and said everything was fine. What keeps me awake at night is the fact that these guys thought, "wow, I made it home alive" only to have to fight the war all over again years later. The very first thing my Dad said when he was diagnosed was that he was glad it was him and not me because he knew he was dying. He also said he was sorry because he knew it was his fault, that his illness caused mine. I was very angry that they put him in a position where he felt responsible for my ET because he did the right thing and went to Vietnam while his friends were heading north to Canada. I wish he didn't pass with that on his conscience. As far as your husband's ET goes, is there any way you can find out if his doctor at the VA is in contact with a hem/onc regarding his medication? You hit the nail on the head when you said they all want to cure him of the disease. As my doc says, that's where a lot of doctors go wrong with treating ET patients. She's not a big believer in using medications unless it's absolutely necessary. I've already been in the high risk range (over 2 millions platelets) and rather than giving me medication, she chose to keep a closer eye on me and watch out for symptoms of something else going on. All I've taken in the past 10 years is asprin because ET puts you at higher risk of heart attack or stroke. Please stay in touch and let me know how the VA appointment goes. Again, if there is anything at all I can do, don't hesitate to ask. If you just want to talk to someone who understands, you know where to find me! Allison ghostgirl1977 Thu, 08 May 2008 00:00:00 GMT