CancerCompass message board discussion started by randsd on 3/12/2008 http://www.cancercompass.com/message-board/message/all,21922,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband is 50.  He was told on his b-day about his platelets being high.  We have tried to trace back when this began, and not sure when, but we do know when some of his symptoms began.  He works at a creosote plant.  Treats telephone poles.  The day after cleaning one of the cylinders, we were in our slaughter house, (we also process dear and make pork sausage), he turned towards me and almost passed out.  I got him to the house where he started pouring sweat, his heart was racing, and he kept going in and out.  SCARED ME!!!  He is stubborn and wouldn't let me take him to the doctor.  A few days later, another attack, just not as bad.  I talked him into going to the doctor...they said he had high blood pressure, and vertigo.  Put him on pills and that was it.  He continued having small attacks...dizziness, nausea, blurred vision, sweating and shortness of breath.  I made another appointment, they reffered him to a Cardiologist.  They did all kinds of tests.  Nothing.  He had one at work, and they sent him to the E.R.  They told him he was stressed, sent him home.  The next week, while at work, same thing.  By this time, we had bought a blood preassure machine.  His b.p. was a little high, so work sent him back to the E.R.  He was also having a little pressure in his chest.  The E.R. said he was having a heart attack.  Sent him to a bigger hospital.  They did a heart catheter.  Nothing.  They ran pulmonary tests, nothing.  Sent him to another doctor, in which he told him as soon as he walked in...he was under stress, Anixiety was his problem.  Next weekend...No energy at all now, along with other symptoms.  I took him straight to the big hospital, they ran blood tests, high platelets.  Called in a Hem.  He did a bone marrow.  He has E.T.  Put him on Anagrelide.  His heart rate jumped.  So, he took him off and put him on Hydrea.  He told him of the symptoms, and he said it had nothing to do with the disease or the med.  We got to know nurses pretty well, within 3 months.  This Hem. failed to tell him to drink plenty of fluids and keep moving, and also that is was a chemo pill.  So, he got dehydrated a few times.  Well, one trip to the E.R., the doc said his gallbladder had to come out.  His platelets were at 900,000 so his Hem put him on 40,000mg(8pills) a day.  So, all his symptoms increased dramatically.  Along with gainin the bone pain.  He was hurting.   There were times he was telling everyone good bye.  And my husband is a strong man.  He's been called the Bull all his life, people would call him before anyone else if they needed help.  And now, he feels helpless.  His energy and strength was gone.Well, after the g.b surgery, they put him on 5 pills a day.  His WBC dropped to dangerous level.  They took him of the Hydrea.  His energy level shot up.  We were cutting wood and clearing our land.  Well 2 wks later his platelets went up to 318,000 and his Hem decided it was time to go back on the Hydrea.  He changed back quick.  Finally, after his platelets rose to almost 600,000, I said that was enough.  MDA is MDAnderson...Cancer Center.  Very welll known.  They put him on Pegasys...I am sure you have heard of it  on the archives.  It seems to be doing okay for now.  A lot better than the Hydrea.  MDA is great.  They don't make you feel like you have done something wrong or that this disease is nothing and has nothing to do with how you are feeling. Anyways, sorry so long.  Thanks for listening and looking forward to talking more.  I'll try to keep it shorter next time randsd Wed, 12 Mar 2008 00:00:00 GMT  On 3/12/2008 randsd wrote:My husband is 50.  He was told on his b-day about his plateletsbeing high.  We have tried to trace back when this began, and notsure when, but we do know when some of his symptoms began.  Heworks at a creosote plant.  Treats telephone poles.  The dayafter cleaning one of the cylinders, we were in our slaughter house,(we also process dear and make pork sausage), he turned towards me andalmost passed out.  I got him to the house where he startedpouring sweat, his heart was racing, and he kept going in andout.  SCARED ME!!!  He is stubborn and wouldn't let me takehim to the doctor.  A few days later, another attack, just not asbad.  I talked him into going to the doctor...they said he hadhigh blood pressure, and vertigo.  Put him on pills and that wasit.  He continued having small attacks...dizziness, nausea,blurred vision, sweating and shortness of breath.  I made anotherappointment, they reffered him to a Cardiologist.  They did allkinds of tests.  Nothing.  He had one at work, and they senthim to the E.R.  They told him he was stressed, sent himhome.  The next week, while at work, same thing.  By thistime, we had bought a blood preassure machine.  His b.p. was alittle high, so work sent him back to the E.R.  He was also havinga little pressure in his chest.  The E.R. said he was having aheart attack.  Sent him to a bigger hospital.  They did aheart catheter.  Nothing.  They ran pulmonary tests,nothing.  Sent him to another doctor, in which he told him as soonas he walked in...he was under stress, Anixiety was his problem. Next weekend...No energy at all now, along with other symptoms.  Itook him straight to the big hospital, they ran blood tests, highplatelets.  Called in a Hem.  He did a bone marrow.  Hehas E.T.  Put him on Anagrelide.  His heart ratejumped.  So, he took him off and put him on Hydrea.  He toldhim of the symptoms, and he said it had nothing to do with the diseaseor the med.  We got to know nurses pretty well, within 3months.  This Hem. failed to tell him to drink plenty of fluidsand keep moving, and also that is was a chemo pill.  So, he gotdehydrated a few times.  Well, one trip to the E.R., the doc saidhis gallbladder had to come out.  His platelets were at 900,000 sohis Hem put him on 40,000mg(8pills) a day.  So, all his symptomsincreased dramatically.  Along with gainin the bone pain.  Hewas hurting.   There were times he was telling everyone goodbye.  And my husband is a strong man.  He's been called theBull all his life, people would call him before anyone else if theyneeded help.  And now, he feels helpless.  His energy andstrength was gone.Well, after the g.b surgery, they put him on 5pills a day.  His WBC dropped to dangerous level.  They tookhim of the Hydrea.  His energy level shot up.  We werecutting wood and clearing our land.  Well 2 wks later hisplatelets went up to 318,000 and his Hem decided it was time to go backon the Hydrea.  He changed back quick.  Finally, after hisplatelets rose to almost 600,000, I said that was enough.  MDA isMDAnderson...Cancer Center.  Very welll known.  They put himon Pegasys...I am sure you have heard of it  on thearchives.  It seems to be doing okay for now.  A lot betterthan the Hydrea.  MDA is great.  They don't make you feellike you have done something wrong or that this disease is nothing andhas nothing to do with how you are feeling. Anyways, sorry solong.  Thanks for listening and looking forward to talkingmore.  I'll try to keep it shorter next timeHi,Myhusband also had ET.  He was diagnosed in 1991 after a severe cutto his hand.  He has been on Interferon shots, Anagrelide, andHydrea.  The Interferon shots totally wiped him out as did theAnagrelide.  He couldn't remember anything, just sat and slept inthe chair.  The Hydrea causes terrible mouth sores when taken inlarge doses (at least it does for him).  He is a Vietnam Vet andwe wonder if this maybe came from the Agent Orange.  He was in theCB's and worked directly with the barrels that the Agent Orange came inand he spent two tours there, so he was exposed directly to it. No one else in his family has this problem, so we are researching thatpossibility.  <> My husband has no symptoms from thedisease - only from the drugs.  At times, he gets so frustrated,he just wants to stop taking all medications.  He was going to theMayo Clinic at one time and they actually had him on high doses ofAnagrelide which is a big NO NO if you have heart problems, which hedoes.  So, I guess my message to you is be your own doctor in thesense that if you feel like the medication is worse than the disease,speak up.  My husband actually lost 15pounds one summer as themouth sores were so big that he couldn't eat.  When we asked thedoctor if the medication could be causing this, we were told no. I went out on the internet and researched the side effects of Hydreaand there in black and white were mouth sores.  When we took thatinfo to the doctor he said "that only happens in a small amount ofpatients".  Well, it was happening to my husband.  Also, I amhearing that staying on Hydrea over a long period of time can actuallycause Leukemia.  So, flip a coin.  Don't really know what theanswers are.  My husband really wants to go off all medication andjust take the baby aspirin, but I'm not really comfortable withthat.  I just don't think there is enough info out there yetregarding the possibility of a stroke with the high platelett count.Thanks for posting your message and please keep in touch.  Was your husband in Vietnam?   frankaw Thu, 15 May 2008 00:00:00 GMT