ET or Secondary?!

hi there, my name is Ammaro,

I'm scared shitless..

Diagnosis: Essential Thrombocytosis

Age:47

Sex: male

Personal: No smoker – no alcohol

Chronic illness: chronic stomach infection.

Medications:

- Lansoprazole for 9 years

- Londalop 2 "pitavastation calcium" for 10 months for high cholesterol

Issues

- 3 blood donations in two months

- Vitamin B & biotin doze once daily for two years.

- Chronic stomach infection (probably esophagus & colon infection as well)

- During a very recent 08. 21. 2017 endoscopy stomach and esophagus were detected, helicobacter pylori were positive, two anti-biotic were taken for 10 days along with Dexalansoprazole 2 pills daily ( should be for six weeks).

- Heavy stress due to living in war country.

Surgeries:

- Kidney stone

- Nose sinus.

Story: during a normal blood check, high count of blood raise were detected, digestive doctor suggested blood donation , three blood donations were done, number still going high( 650 – 720- 927- 997- 1180) Jack II were done result negative, bone marrow biopsy were done which were negative, showed some little fabric, then stained, result were negative.

Spline is normal, no symptoms except for one numbed index.

After these examinations, these medications were prescription:

- Hydrea 500 mg 3 pills a day

- Iron

- Zyloric 300 "Allopurinol" for uric acid

After 2 weeks of medication another CBC work were done, it showed:

- Platelets count 381

- White blood cells 3*** it was 9*** before two weeks.

- Uric acid 3.4 after it was 8,5

Doctor adjusted the dose to:

- One day 3 pills of hydrea 500 mg

- The other day to two pills of hydrea 500 mg

- Zyloric " Allopurinol " to 100 mg

- Stay on Aspirin

Questions:

- Is the new dose right?

- What about the white blood cells?

- Am I in danger?

- Any diet?

- When can I stop hydrea?

- When can I have another child after using hydrea?

- How to really determine its essential or secondary thrombocytosis?

- If ET how to prevent from turning into something bad?

- If you have some educational materials to read both on disease or medication please let me read, I hate to browse the net and get depressed.

scared.

[Mazcd Partner MPNVoice]

Hello Ammaro, welcome to our forum, we can all understand how scared you are about your diagnosis, we have all been through those feelings and thoughts. I would urge you to read as much as you can on our website mpnvoice.org.uk all the information on there has been written by leading MPN specialists and nurses so you can definitely rely on it.

With regards to the dose of medication, this does vary from person to person regardless of their counts, the dose of medication is determined by many factors for each person, blood counts, current and past medical history, current medication, blood pressure, weight etc, so we cannot advise you on what dose is correct for you.

With regards to stopping Hydrea, your haematologist will tell you when you can change the dose or change medication, it is not advisable to stop medication as this is what will be controlling your blood counts. If you are planning on having a child and you are taking drugs such as hydroxycarbamide (hydrea) or anagrelide to control your MPN, we recommend that you ask your haematologist for a different treatment plan and that you discuss whether you should stop taking these drugs for at least six months before becoming pregnant or fathering a child. This is because hydroxycarbamide and anagrelide are drugs that can interfere with fetal development.

In general, patients with ET, without severe clotting or bleeding complications have an excellent chance of living out a near-normal life span if properly monitored and treated as necessary. You will read the ET and PV can develop into MF or acute myeloid leukaemia, but don't panic as this is very rare, if you have any concerns speak to your haematologist.

I hope this helps. Best wishes, Maz

[Hidden in reply to Mazcd]

Thank you Maz, any good word I hear these days helps me.

Yes my hematologist said I have to continue with those high dozes for a month, I'm concerned i will be left with no palettes (funny right), does Hydrea has various type other than 500 mg? in addition my white blood cells dropped dramatically.

best

[mhos61]

Welcome to the forum Ammaro,

I think your questions really need to be answered by a medical professional, your case sounds quite complex. I suggest that anything you do not fully understand you ask your Dr/haematologist for an explanation.

From what you say, it sounds like you're investigations to date have been thoroughly undertaken. As for the hydrea, it is a matter of finding a dose that stabilises the platelets. This may take a little while. For instance, I was prescribed one Hydea tablet daily for ET, and when my counts fell to a desirable level - it was then reduced to one tablet five days a week. This dose has managed to stabilise my platelets for the last fifteen months. I hope it continues.

As Maz has already said try and read the information provided on the MPN Voice website.

We're all here to support you too, so come back whenever you feel the need.

Mary xx

[Hidden in reply to mhos61]

Thanks a lot Mary, that helped.

[gset]

I too have ET diagnosed at 41 with platelets double yours. The best advice I had was to stay well hydrated as this helps in all sorts of ways. I was in 4x 500mcg HU daily for 10 years and did well on it. Try some alternative therapies to help with the anxiety. I found reiki helped me with calming and helped me manage energy levels. Good luck

[Hidden in reply to gset]

so glad for you, yes I have high level of anxiety..good advises, thanks..wish you all recovery.

[linds]

Hello Ammaro,

Very best wishes to you and please try not to be scared. I know we are all different and our medications different too so I don't feel I can comment on that side of things, however, as far as the future goes research is moving mountains and given how young you are, I bet you see huge advances and maybe even a cure during your lifetime. I have MF and am now 70 but I can assure you I enjoy my life every day even with the few ups and downs. The meds I take (and there are a lot) keep me smiling and I am so grateful because only a few years ago there weren't any like Rux which suit me particularly well.

Don't read the scary articles read the ones Maz has directed you to. Try to be positive as it takes much less energy than being negative. I feel so much for you being afraid because I have been there too and also felt so lonely as I knew no-one else with a similar condition - then I came across this forum! Take heart.

Linda

[Hidden in reply to linds]

Linda I fell you..thanks for the words of wisdom..I need to try to focus on being positive..last night I couldn't sleep, feel bad for it...keep it on.

[ChelseaF]

Your case certainly sounds complicated. I am also not sure if my high platelets are ET or secondary. Biopsy left it up in the air as I don't meet the criteria for diagnosis according to WHO standards but it can't be ruled out. The hematologist doesn't think I'm secondary but I'm still without a diagnosis.

With all your stomach issues have you tested vitamin levels? I am low in B12 and D and I'm waiting to see if supplementing has any impact on my platelet levels. We'll see. It's hard to be in limbo. I hope your doctors get to the bottom of it soon.

[Hidden in reply to ChelseaF]

ChelseaF right, its a limbo, how ot make sure about vitamine levels what kinda test? thanks for the input.

[ChelseaF in reply to Hidden]

I'm sure your doctor will know which vitamin levels but I would at least check B12 (if you take supplements it may be artificially high so tell the doctor), vitamin D, folate, calcium. If you have a lot of stomach and intestinal problems it is possible that you are not absorbing vitamins properly.

It may not be the answer but it should be easy for your doctor to order some blood tests to rule it out as a secondary cause.

[katiewalsh]

Dear Ammaro. I'm so glad you've joined our forum and want to welcome you. It's all very scary at first. But you will be happy to know that not long from now you won't be so scared and soon you'll be living your life pretty much as you did before. And if you have any problems or questions, please feel free to ask. If it's something we can answer we will and there are a lot of us here who will get to know you and you'll get to know us. And WE ALL CARE ABOUT EACH OTHER very much. Including you now. We're one giant family here to support and help each other. Are there doctors where you live who are familiar with MPN's? Where do you live? Someone on this forum might know of a specialist near you. Please remember that no question is too silly to ask. And advice like drinking 2-3 liters of fluids daily, getting enough rest but also some exercise and eating well are important. Some on here find medications to reduce stress very helpful and it sounds like you have a lot of stress where you live. But you can be guaranteed that you will feel much calmer about this diagnosis once you see how little it's going to affect you. Be well and take care of yourself. Katie.

[Hidden in reply to katiewalsh]

Thank you Katie, your words are calming, I live in Damascus, Syria..doctors vary but know one tells you the score..to be hydrated is new to me..my wife is worried about Hydrea and the ability to have a child..I'm suffering severe panic attatcks specially in the morning..are ET patients in cancer waiting room? any calming medications please.

Katie & all you are family.

[katiewalsh]

Dear Ammaro, knowing where you live I understand why your lives must be very stressful. First, remind yourself that the stress from being diagnosed with ET will disappear soon as you realize that this is not an aggressive cancer. There are many people on this blog who have had ET for 40 years with very few problems. You might want to as Maz to pair you up with a "buddy". Someone you can interact with frequently by email. Reread Maz's reply to your original post. She's the expert here. And her advice is excellent. You ask about medications for anxiety. Your doctor should be able to help you with that. I live in the United States and our medications are probably different. But if your stress is preventing you from sleeping and you're having severe panic attacks your doctor should prescribe something to help you. My life is nowhere near as stressful as yours and I take medications to help me with stress. Many of us do and find it extremely helpful. In addition to medications there are breathing exercises which are very helpful at reducing stress, meditation and yoga and Tai Chi are also helpful. There is a list of "Topics" on this forum website which you might want to look at to help learn more. And try to just take things one day at a time focus on something pretty and calming and accept that this will get much, much easier in a short time. And remember to post on here whenever you have questions or just need some emotional support. Take good care of yourself Ammaro. As we say on this forum, "I'm sending you e hugs!" Katie

[Hidden in reply to katiewalsh]

Katie,

The first doctor I went to made me in a crazy state, she started shooting at me and my wife, she start flashing cancer names in a very bad way, insulting us and making fun of our questions..blaming us for the disease..i haven't recovered from that meeting..then i searched for another doctor who got American board..hes good but doesn't talk much..consulted with my Dr friend in Pittsburgh..he told me to find a relaxing doctor cause its a long journey..Hydrea is so expensive in times of war but regardless of that I in a state that I cant read anything about this issue..felling so calmed with this forum..In not afraid to die..i sad for the people around me..yes i need someone to be in touch with..thank you Katie..please keep coming.

[katiewalsh]

Ammaro, I also had a bad doctor early on who told me I would probably be dead from this in 8-10 years. Then I found good doctors. I have ET and am jak+. And I'm told this cancer will probably never kill me if I get good medical care. For me that's Hydrea and blood thinners. I'm 68. Ammaro I strongly encourage you to contact Maz and ask for what's called a "buddy" which is one person who will help you on a regular basis. Maz will select your "buddy" based on your specific cancer and needs. I am not a buddy. I'm just another person on this forum. In addition to having your own "buddy" you can always post questions on this forum or ask for support. Your buddy can help explain how to do this. I'm very glad I have been helpful. Please enjoy your life and don't worry anymore. Katie

[Hidden in reply to katiewalsh]

I did ask her for a buddy, thanks a lot.

[katiewalsh]

That's great news Ammaro! It will be good. Don't forget that you can always still post questions on the forum or just expressions of gladness when things are going well or worries when they aren't and you want some extra support. And there's no such thing as a question that's too silly to ask. Hang in there and be gentle with yourself. Katie