Phlebotomy and reducing counts

[Sunnylesser]

Hello

Thank you all for such valuable information! I am recently diagnosed at 70 years young after routine blood work. I am an avid runner and very active all around. I was diagnosed with PV Jax 2 positive. I was started on hydrea a baby aspirin and phlebotomy every 2 weeks. I thought my blood counts would come down very quickly but it’s only gone down 1 point . I am fearful they will want to increase the hydrea ............ If anyone has some words of wisdom it would be appreciated! I hope you all are enjoying the joy each day brings .

Many thanks!

[WeylandYutani]

Hello Sunnylesser,

I was diagnosed in January 2021 with a hematocrit of about 57%; since then I had about 10 phlebotomies, weekly at the beginning.

When you start it won't come down a lot, you still have a lot of iron etc. but you will see some positive results very soon. Just be patient. With the chronic illness you got you have to learn to be patient. And don't worry too much

Cheers

[ainslie]

It can take a bit of time to come down , as somebody else said the iron stores have to come down, you will see your MCV come down which is good indicator of iron status, maybe best to discuss with MPN nurse or haem though

[gvibes]

Hi Sunnylessor,

I am 68 years old, diagnosed with PV in December 2020 with initial hematocrit at 67%. I had 8 phlebotomies in 2+ weeks to bring hmct to 45. after the first three, I was still above 60%. so it takes a while. I didnt have negative effects from the aggressive phlebotomies - my doctor thought it was important to reduce hmct to 45 quickly to reduce immediate thrombotic risk (which studies have shown risk in PV to be alot higher with hmct >45%. ) Like others have said, once iron levels are reduced, then you slow the making of cells and reduce the size of cells that are made- but that will take multiple phlebotomies. Maintenance of levels with phlebotomies becomes much less frequent due to this iron deficiency. The cytoreductive agent is intended to take the phlebotomies place.

good luck

[Meatloaf9]

Hi, I am similar to you. 71 now with PV, was ET just 3 years ago when diagnosed also Jak2+. Wondering how much HU you are starting on? One of my Drs recommended starting at 1 cap per day-500 mg and the other recommended starting at 4 per day-2000 mg. I was fearful of starting at such a high dose so I started at 500mg (1). The Dr who recommended the high dose said that taking the 1 per day would have no effect on my levels. Started yesterday.Also, as a very active person what do you plan to do about sun exposure? My specialist said to avoid it or wear long sleeves and long pants, hat and sunscreen anytime outside and in the sun. That does not go well with cycling for 2 hours each day which I try to do every day summer and winter. I don't know what to do about that, I don't think I could wear long sleeves and long pants. Wondering what you have been doing or plan to do as it relates to sun exposure.

Best of luck to you on your journey.

[lucieboo]

I agree it won't come down right away but phlebotomy would help in the initial stages.I had phlebotomy for a couple of years then Hydrea. I am now on Jakavi progressing to myelofibrobis, but after 11 years of PV. I am 79. I was a fit mountain walker but am learning to live with my limitations We are on holiday in Andorra and every route is up. I am slow but still manage some climbs

A positive outlook is the most important. Cancer helps you appreciate every day. Keep happy and good luck,

Lucieboo.