Have ET: What if spleen is enlarged?

Does your doc have a patient portal you can email? That service is good for questions like these.

Seems like I read that enlargement affects a minority of ET patients, something like 30 percent. If you don't feel full when you eat, it may be a sign you don't have enlargement.

My dad did have spleen enlargement with ET, platelets around 1,000, and HU helped with that, it seemed. Much less discomfort.

I also have ET. My platelets got up to 800, but no enlargement. I have been on HU for four years, platelets swim around in the 400s. So far so good.

My understanding is that HU is forever unless your platelets drop due to progression, it stops working, or you can't tolerate it. If going on HU bothers you, you could ask about Pegasys/interferon.

I am 68, have had ET for about 15 years now.

@nohrt4me Thank you for that info. Spleen was not enlarged, fortunately.
As noted above, one Dr. prescribed the HU, the other just an additional low-dose aspirin. I’ve chosen the latter because, frankly, the thought of going on a chemo med forever scares me half to death. However, now I feel like I’m looking over my shoulder, waiting for a stroke or a heart attack to happen. It’s helpful to hear from people who have been on the HU for a time. I’ve only just been diagnosed 2 mos. ago, still questioning every aspect of this disease… Thanks for your response.

Glad there is no enlargement.

The first year or two with ET is nerve-racking because they don't tell you anything.

HU actually helped me with fatigue and headaches/visual distortions. I wasn't expecting that because we don't associate "chemo" with anything good. I mentioned it to my hemo, and she said, "Yes, some patients say they feel better." Would have been nice to know before she prescribed it.

HU is supposed to be ok to take for 20 years. I started when I was 63, so I'm not too worried about it creating problems.

I do use sunscreen because, like lots of other meds, HU makes your skin more sensitive to sunlight and thus skin cancer.

If you are worried about stroke or heart attacks, talk to your GP. Mine told me to lose 20 pounds (10 more to go!), get more walking in, and to go on my husband's heart healthy diet. She said those would help reduce overall vascular risk aside from ET. So there is stuff you can do to help yourself and maybe give your health a boost. Those changes have also helped with fatigue and headaches. Lots of fresh air seems helpful, too.

Hang in there!

@nohrt4me, Thank you for sharing your experiences with the HU. I know at some point I’ll be having to take it. Just trying to put it off a little longer…maybe somewhat in denial about all this, as well.

I have considered the “headache angle” to taking the HU, because I have almost daily (actually nightly) headaches. But those have been part of my life for about 15 years-long before my platelets spiked, so I don’t think in this case, the elevated platelets are the cause. But, you never know, maybe it would help.

Anyway, congrats on your first 10 lbs! And good luck on your health journey. God Bless!

was on HU and no problems and yes my spleen has been enlarged for quite a while, since i developed iron defiency anemia was taken off of hu and put on iron pills

@rlybolt, is the iron a short-term solution? Will you eventually go back on the HU when the anemia subsides? I hear of people who have to have the spleen removed..I wonder under what circumstances that occurs, and if they are able to continue with their platelet-reduction therapy. I also wonder if the spleen ever shrinks back to normal size. I fortunately don’t have to think about that, presently. Thanks for your input and best of luck with your therapies.

my rbc has come back up to normal and so far have not been put back on hu. Have been told to stop the iron pills and nothing been mentioned about removeing my spleen it has been enlarged for quite some time. see the oncologist again next month and have some questions since my wbc is up and so is platelet count.
will let you know what dr says.

I am 81 have the pv for almost 2 years. the only thing i was worried about was hair loss which did not happen.
Looked up iron defiency anemia and found that hu can cause it. my rbc was very high that is why i was put on hu and i also had mbl b-cell which changed to cll, no problems it is just a watch and wait. I have a cousin who also has cll and she has said if you are getting cancer cll is fine cause nothing happens. next month when i see oncologist it is question time.

stupid question what is ET?

my rbc is back to normal and i read that hu can cause anemia. Dr said he would discuss hu when i see him next month. I don't think the spleen does shrink.