ET under 50: I’m always the baby in these groups.

Posted by milestogo @milestogo, Mar 10 8:01pm

Hello, all. I was diagnosed with ET three years ago when I was only 45 years old. Odd, I know. Anyway, I’m on 2000 mg of hydroxyurea, all in one dose, every single day, and have been for the last three years. I’ve already developed severe secondary Reynaud’s disease, have constant fatigue and muscle weakness, and a compromised immune system from constant low white cell counts. Has anyone else had a road this rocky?

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nohrt4me (Jean) | @nohrt4me | Mar 16 8:54am

In reply to @vivoconte "Use otro interferon durante 5 meses cuando recién me diagnosticaron porque quería poder amamantar a mi..." + (show)

@vivoconte I am sorry that interferon didn't work for you, especially with a new baby. That must have been a hard time for you. The interferons are certainly not for everyone.

vivoconte | @vivoconte | Mar 16 9:34am

In reply to @nohrt4me "@vivoconte I am sorry that interferon didn't work for you, especially with a new baby. That..." + (show)

@nohrt4me, si fue muy duro realmente. Especialmente cuando tuve que comenzar con hidroxiurea en el comienzo de su 5 to mes de vida y no pude amamantar más.

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nohrt4me (Jean) | @nohrt4me | Mar 16 10:43am

In reply to @vivoconte "@nohrt4me, si fue muy duro realmente. Especialmente cuando tuve que comenzar con hidroxiurea en el comienzo..." + (show)

@vivoconte !Lo siento! The first year with a baby is hard enough without struggling with treatment for illness.

lalalaura | @lalalaura | Mar 17 1:53pm

I'm so sad to hear about the health complication you're enduring from HU. I also feel young in these forums, as I was diagnosed at 43 and I'm 49 now. I try to do yoga 3 time a week, and I bought a far infrared sauna 2 years ago (which I also try to use 3x/week) that helps with achiness. I drink a lot of water and mostly stick to the Mediterranean diet to help reduce inflammation, but these are the only things that help me feel like I have some sense of control over this. And now I'm dealing with perimenopause symptoms and can't do hormone replacement therapy because that increases risk of stroke. I also listen to mindfulness meditations and tell my platelets to calm down, but it's trickier for those of us with "a longer runway" to navigate this. Sending you all the best healing and light, and though us young ones are rare, you are not alone < 3

Colleen Young, Connect Director | @colleenyoung | Mar 21 4:16pm

In reply to @lalalaura "I'm so sad to hear about the health complication you're enduring from HU. I also feel..." + (show)

@lalalaura, well said. There may be different considerations for people with a "longer runway." I'm tagging @milestogo and @vivoconte as I'm sure they understand first hand.

lynnevb | @lynnevb | 4 days ago

Hello Milestogo,
I too was diagnosed at age 49. I am now 71 yo and doing well. There is hope. Do you have seen an MPN specialist that can help manage your care with your local oncologist? There has been a lot of progress in understanding and treating ET. Some of us who are triple negative and having trouble with severe menopause symptoms are allowed to take lowdose estrogen but you must get the ok from the specialists. I have been doing well and I hope this gives you some comfort that you can live with this disease for many years.

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