Adeyababa with ET

[Adeyabeba]

Hi everyone, I was diagnosed for Et over a year and am on Asprin 100mg per day. Last week my platelet number goes to 1.2 million Hi everyone, I was diagnosed for Et over a year and am on Asprin 100mg per day. Last week my platelet number goes to 1.2 million and my doctor wanted me to start hydroxyurea. And before prescribing, he ordered me to get a colonoscopy. Is there a relationship between these two? I was also afraid of taking this HU because I have a lot of burden in my life work, taking care of my children my mom. it is my work that makes their life. I am afraid of losing my job because of the HU.

[Mwalimu]

Hello, Adeyabeba! Where are you living? Do you have access to the British NHS? Sallie

[Adeyabeba in reply to Mwalimu]

No,I am from Ethiopia. Thank you so much.

[Wyebird]

I had to have a few tests just to rule out any other source of infection prior to diagnosis It’s precautionary. Have you been tested for a mutated gene?

You shouldn’t loose your job just because you take hydroxi.

You might even feel a lot bettter for being on it.

Good luck.

[Anag]

Its usual to start meds at 1200. I had to start at 800 because I had already had 3 TIAs. Is Anagrelid an option for you? Most doctors don’t subscribe it because it’s expensive and HU is the cheapest. I can’t take HU since I have an inborn anaemia and I can’t take interferon because I have Hashimoto (Autoimmune). All meds have side effects. Anagrelid concentrates only on reducing thrombocytes and doesn’t do any thing to other cells in the blood.

[Adeyabeba in reply to Anag]

Thank you so much Anag.I think here in my country HU is available.

[Bluetop]

Hi Adeyabeba,

I too had a colonoscopy early on, to rule out other problems, but am managing fine on hydroxy and asprins. Some consultants favour pegulated interferon, but I get the impression that hydroxyurea is still the most commonly prescribed. Good luck

[Adeyabeba in reply to Bluetop]

Thank you so much Bluetop.

[heathermc]

Started on 1 tablet 500.mg every day ..few up a and downs but a year later on 2 a day. Platelets were 1.8 million they are now between 600 and 700.. I also take 2x Angralide as well.

It's a bit of a roller coaster but you need to be patient side effects vary ..mine not too bad bit of tiredness . Then this virus thing hasn't helped.

Lots of questions. Drink lots of water and be kind to yourself everyone's story is different.

Make sure your checked regularly..but don't be too anxious . Worrying is the worse thing you can do..

[Adeyabeba in reply to heathermc]

Thank you so much Heathermic. this might help me a lot.

[hunter5582]

If you have not had a colonoscopy, then it is a sensible precaution when you have a MPN. We are at increased risk for other neoplasms like colon polyps, which can be cancerous. The toutine monitoring everyone should do is particularly important for those of us with MPNs.

Hydroxyurea would not make you lose you job providing you do not experience side effects that interfere with work. Fatigue is one of the things people sometimes experience with HU. Suggest you review the other options and compare risks/benefits. Some providers have moved towards PEGylated Interferon for a variety of reasons, including the toxic nature of HU. Impossible to say what is right for you. Only you can determine that. Do be sure to talk to your care team about your options.

FYI - not all providers automatically move to cytoreduction based on a single read at 1.2 million unless you become symptomatic or have other risk factors. It is the trend over time that really matters. You do not mention your age, but that is a factor in determining whether HU is appropriate to consider. Younger patients (less than age 60) are generally not considered good candidates for HU due to the long-term use risks. Again, no way to say what is right for you. You will have to look at all of the risk factors, evaluate all of your options, then make the best choice you can.

Good luck. Do let us know how things turn out,

[Adeyabeba in reply to hunter5582]

Thank you so much hunter5582, your every word makes me feel better. I am 48, and mother of two kids. And I am from Ethiopia I have appointed on August 25 for the colonoscopy and September 3 for the HU.

[hunter5582 in reply to Adeyabeba]

Glad to hear that you are starting to feel better about what lays ahead. The worst part of the colonoscopy is actually the preparation the day before. Basically an entire day of completely evacuating your bowels. The newer dry-preps are not nearly as bad as what they used to use. Yuck! I hope you get good news from the procedure. I have had multiple polyps removed in 3 colonoscopies, but none were cancerous. Getting them out before they become cancerous is a really good thing.

Regarding the HU, you are on the young side to be on that medication. Suggest you be sure to talk about the other options (PEGylated Interferon, Ruxolitinib) with your care team. If you do decide that taking HU is in your best interests, there will be some additional things to know about using it. There are some precautions to take that you can find out about if you decide to use it.

Meanwhile, I hope you can ease your mind and know that this can all be managed. I have had a MPN (ET that progressed to PV) for over 30 years. At age 65 I still have a good life and despite a few challenges of late, I plan to continue to do so.

All the best yo you.

[Adeyabeba in reply to hunter5582]

Thank you so much .Keep in touch.

[Mazcd Partner MPNVoice]

Hello Adeyabeba, it is very scary when you are told you have to start taking Hydroxyurea, we know how you are feeling, and many people do very well on it, and some find that they can't tolerate it. The best thing is to discuss your concerns with your doctor, discuss the possible side effects and benefits for Hydroxyurea and also discuss alternative medications. And you can then try it and see how you get on, you might be ok and feel fine taking it. Good luck with it. Maz

[Adeyabeba]

Thank you Mazed.