Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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ebertolis | @ebertolis | Apr 24 8:37am

In reply to @eloise999 "@1995victoria you can read papers on the topic and get the nuances of the work yourself..." + (show)

@eloise999
Hi, just one little thing. It is very good perhaps that pegasys reduces the mutant JAK allele, but I would not like to contract a hepatitis B or C.

janemc | @janemc | Apr 24 8:58am

In reply to @dewz13 "How involved is your PCP in your condition/medication? I don’t mean diagnosing but do they acknowledge..." + (show)

@dewz13

I'd say 98% of us are the first patient with ET our PCPs has ever encountered. ET is so rare it's beyond their imagination.

birgitr is right. YOU must be your own advocate.

Your oncologist/hematologist should be able to counsel you on vaccines, maybe medications too.

eloise999 | @eloise999 | Apr 24 10:29am

In reply to @ebertolis "@eloise999 Hi, just one little thing. It is very good perhaps that pegasys reduces the mutant..." + (show)

@ebertolis boy. That is not a little thing. Why do you think your hepatitis risk is greater with interferon?

ebertolis | @ebertolis | Apr 24 11:08am

I think it because I have read the notice of the Pegasys on Internet. On this site: https://www.vidal.fr/medicaments/gammes/pegasys-22281.html (in French).

ebertolis | @ebertolis | Apr 24 11:18am

Hi, in fact I did a mistake in lecture, excuse me. Hepatitis is not a side effect but the desease that pegasys heals. But there are a lot of other side effects. It is true that Hydrea can have also many, but the truth is that I fear the injections. Best regards.

birgitr | @birgitr | Apr 25 7:19am

In reply to @kat260 "@birgitr Oh, that's great news. I have fingers crossed for you to have no or minimal..." + (show)

@kat260 until now no sideeffects. The shot was set 26 hours ago 🙏

birgitr | @birgitr | Apr 25 7:22am

In reply to @janemc "@dewz13 I'd say 98% of us are the first patient with ET our PCPs has ever..." + (show)

@janemc Honestly since now no one has mentioned vaccines specifically in our situation. Do you have some basic recommendations which kind of vaccines are necessary?

janemc | @janemc | Apr 25 7:33am

In reply to @birgitr "@janemc Honestly since now no one has mentioned vaccines specifically in our situation. Do you have..." + (show)

@birgitr

I'll tell you what works for me . . . it's always best to consult with your own oncologist to learn what is best for you.

For me, annual vaccinations against flu and Covid are a priority, as most of my neighbors in this remote, mountainous part of Virginia are vaccine-skeptics. Also factoring in is my age (71 years).

Those of us who are treating our ET with HU (hydroxyurea) should only have non-live vaccines, as HU does lower our immune response. As far as I know, all Covid vaccines are non-live. Some forms of flu inoculations -- such as the nasal spray -- are live and must be avoided.

Have you been in the habit of getting any annual vaccines, birgitr?

kat260 | @kat260 | Apr 26 8:09am

In reply to @birgitr "@kat260 until now no sideeffects. The shot was set 26 hours ago 🙏" + (show)

@birgitr That's great news. Hope it continues. What dosage are you on? Is it once a week?

birgitr | @birgitr | Apr 26 10:46am

In reply to @kat260 "@birgitr That's great news. Hope it continues. What dosage are you on? Is it once a..." + (show)

@kat260 Yes, once a week a dose of 90👍

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