New-Et

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

On 3/12/2008 randsd wrote:

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

Hi,

My
husband also had ET.  He was diagnosed in 1991 after a severe cut
to his hand.  He has been on Interferon shots, Anagrelide, and
Hydrea.  The Interferon shots totally wiped him out as did the
Anagrelide.  He couldn't remember anything, just sat and slept in
the chair.  The Hydrea causes terrible mouth sores when taken in
large doses (at least it does for him).  He is a Vietnam Vet and
we wonder if this maybe came from the Agent Orange.  He was in the
CB's and worked directly with the barrels that the Agent Orange came in
and 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 that
possibility.  

<> My husband has no symptoms from the
disease - only from the drugs.  At times, he gets so frustrated,
he just wants to stop taking all medications.  He was going to the
Mayo Clinic at one time and they actually had him on high doses of
Anagrelide which is a big NO NO if you have heart problems, which he
does.  So, I guess my message to you is be your own doctor in the
sense that if you feel like the medication is worse than the disease,
speak up.  My husband actually lost 15pounds one summer as the
mouth sores were so big that he couldn't eat.  When we asked the
doctor if the medication could be causing this, we were told no. 
I went out on the internet and researched the side effects of Hydrea
and there in black and white were mouth sores.  When we took that
info to the doctor he said "that only happens in a small amount of
patients".  Well, it was happening to my husband.  Also, I am
hearing that staying on Hydrea over a long period of time can actually
cause Leukemia.  So, flip a coin.  Don't really know what the
answers are.  My husband really wants to go off all medication and
just take the baby aspirin, but I'm not really comfortable with
that.  I just don't think there is enough info out there yet
regarding 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?