Essential Thrombocythemia

 

On 1/21/2008 Reddisa wrote:

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.

 

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. 

 

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....

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.

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

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

My husband was diagnosed in 1991 with Thrombocythemia after a severe
cut to his hand.  He has been on Interferon shots, Anagylide, and
Hydrea.  The only thing that really works for him at getting the
platelett count down to a manageable range without totally knocking him
out is the Hydrea.  The shots had a terrible side affect in that
he was just "out of it" as well as the Anagylide (sp).  The Hydrea
does have side effects that give him terrible mouth sores if he take
too much, so he regulates the amount of drug that he takes.  He
knows that the doctors want the count down, but he actually loses
weight from the mouth sores as he can't eat.  This has been going
on for some time time and now he is reading that this could be linked
to Agent Orange - he served in Vietnam two different times.  Have
you heard anyting of this.  No one else in the family has this -
don't know where it came from.

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!

 

Allison

On 4/29/2008 frankaw wrote:

This has been going
on for some time time and now he is reading that this could be linked
to Agent Orange - he served in Vietnam two different times.  Have
you heard anyting of this.  No one else in the family has this -
don't know where it came from.

 

Allison,

<>Was pleasantly surprised to see your email.  I
have heard nothing since I posted my plea and I thought maybe no one
cared!  

<> I am sure that we are in for quite
a battle, but the fact is, my husband served 2 tours in Vietnam in the
I Corp as a  MCB133 (construction batallion).  When I went
out and searched AO, the map that came up for Vietname said the
heaviest concentrations of spraying was III Corps, followed by I
Corps.  He did the plumbing,  and a/c and remembers the
barrels that you spoke about.  He has been going to the VA for
medical help as we can't afford health insurance for him, since he is
considered "high risk" with this disease.  The fact that they have
taken this disease off the list really bothers me as they must have at
one time considered it a factor.  He goes to the VA on next
Thursday for an examination regarding his claim.  I know he is
concerned how that will all work out.  I don't think we can prove
that AO caused this, but can they claim it didn't?  No one else in
the family has it.  He has two sons, they are in their middle 30's
and they don't have it.  

For right now, he is doing
well.  He regulates his own medication.  When he had good
health insurance, he was put on Interferon shots, Anagrilide, and
Hydrea.  The shots and Anagrilde were not good to him - he was so
druged, he didn't know where he was at at time.  He did to up to
the Mayo Clinic for quite some time.  He was on Anagrlide (sp)
then and the doctor told him if he could get his platelett count down
to a certain number, he wouldn't have to take more medicine.  When
the results came back, he platelett count had dropped so he shouldn't
have had to take more, but that doctor told him he needed to take the
extra dose.  We found out later from the VA hospital that he never
should have been on that medcine as he has stints in his heart AND that
doctor was heading the study on the Anagrlide medicine.  How crazy
is that - and it took a doctor from the VA to tell us that.  So
over the years, we have just learned to regulate the medication
ourselves.  Different doctors come and go at the VA and they all
want to cure him, but truth be told, they can't help him with all the
more medicine they want to give him - just makes him have large mouth
sores and that is worse than the disease.

If you have any
suggestions, we would greatly appreciate it.  We have spoken to
our 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 

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