1. < Blood Cancers & Disorders

ET progression if all blood cells are increasing?

Posted by lea123 @lea123, Mar 20 12:13pm

I had has ET for 3 years and on hydroxyurea 500mg 5 times a week has kept things pretty stable allowing for platelets to be 500 to 600 range and all other blood cells in normal range. Now all of the sudden my red and white blood cells are high as well as hemoglobin and hematocrit. Dr. Said to increase HU to 7 times a week. Does ET normally progress this way will different bloos trypes increasing nut platelets are up and down within a couple hundred?

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ontheverge | @ontheverge | Mar 26 5:58am
In reply to @janemc "lea123, please ask your doctor about the shortness of breath you are experiencing. Breathing issues are..." + (show)
@janemc

lea123, please ask your doctor about the shortness of breath you are experiencing. Breathing issues are really scary.

But there could be a simple explanation. Congestion may be part of your ET. Not only do we have too many platelets, they're misshapen -- to a degree that may signal "foreign body" and trigger our histamine reaction!

Your doctor may approve your taking a daily antihistamine to ease your breathing.

This brilliant advice was shared on this forum by nohrt4me, and it has made my life so much easier! With my oncologist's approval, I take an antihistamine every morning.

I am really sorry for the stressful time you're having.

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I was not aware of the histamine trigger component of ET. I'd assumed that my shortness of breath when backpacking was due to not getting older. I will be more consistent with antihistamine use and see if that makes a difference. Can anyone suggest an antihistamine that doesn't dry cause dryness of mouth and corneas? I don't take any with decongestants but all, including the Zyrtec I'm using now, have that effect.

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1 reply
janemc | @janemc | Mar 26 6:25am
In reply to @lynnebgraham "Hi @janmec, @lea123, Beginning of the year my platelets were just over 1000, now 11 weeks..." + (show)
@lynnebgraham

Hi @janmec, @lea123, Beginning of the year my platelets were just over 1000, now 11 weeks later after seeing specialist yesterday,now down to 652. Slowly coming down. I am on 1 1/2 x 500mg per day. See specialist in six weeks. Hopefully around 400 by then.

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Brava, lynnebgraham! That is wonderful progress!!!

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janemc | @janemc | Mar 26 6:34am
In reply to @ontheverge "I was not aware of the histamine trigger component of ET. I'd assumed that my shortness..." + (show)
@ontheverge

I was not aware of the histamine trigger component of ET. I'd assumed that my shortness of breath when backpacking was due to not getting older. I will be more consistent with antihistamine use and see if that makes a difference. Can anyone suggest an antihistamine that doesn't dry cause dryness of mouth and corneas? I don't take any with decongestants but all, including the Zyrtec I'm using now, have that effect.

Jump to this post

ontheverge, have you ever tried Claritin (active ingredient loratadine)? I take generic loratadine, which is widely available.

Loratadine is said to take effect a little less quickly than cetirizine/pseudoephedrine, the components of Zyrtec. But you might have less dryness with it.

HU makes us thirsty too/dry-mouthed too . . . . I always have to remind myself to drink water, lots of water!

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1 reply
janemc | @janemc | Mar 26 6:38am
In reply to @janemc "ontheverge, have you ever tried Claritin (active ingredient loratadine)? I take generic loratadine, which is widely..." + (show)
@janemc

ontheverge, have you ever tried Claritin (active ingredient loratadine)? I take generic loratadine, which is widely available.

Loratadine is said to take effect a little less quickly than cetirizine/pseudoephedrine, the components of Zyrtec. But you might have less dryness with it.

HU makes us thirsty too/dry-mouthed too . . . . I always have to remind myself to drink water, lots of water!

Jump to this post

ontheverge, pseudoephedrine is a decongestant . . . hope loratadine will work with fewer drying effects for you.

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lea123 | @lea123 | 4 days ago

Thanks all. This is a great group! I have been on the MNP listserv but didn't find that too helpful for me at least with ET and my stage. I am feeling better with breathing, the two extra HU brought my blood cells and platelets down so maybe that was the issue. Pulmonologist checked things out and saw no serious issue on his end. My white cells however are still going higher and I am in incredible back pain and with some sciatica. Whatever is going on there may be causing the white cell increases, i,e, inflammation. I have had back issues most of my life with degenerative disks etc. but never to this extent and for so long. Back Dr. Thurs. but will take weeks to get an mri approved I am sure.
I am grateful that for over 3 years my ET was stable and I didn't have any side effects that I could relate to it except some fatigue. I guess the 'honeymoon' is over.

Lea/ET/63

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3 replies
nohrt4me | @nohrt4me | 3 days ago
In reply to @lea123 "Thanks all. This is a great group! I have been on the MNP listserv but didn't..." + (show)
@lea123

Thanks all. This is a great group! I have been on the MNP listserv but didn't find that too helpful for me at least with ET and my stage. I am feeling better with breathing, the two extra HU brought my blood cells and platelets down so maybe that was the issue. Pulmonologist checked things out and saw no serious issue on his end. My white cells however are still going higher and I am in incredible back pain and with some sciatica. Whatever is going on there may be causing the white cell increases, i,e, inflammation. I have had back issues most of my life with degenerative disks etc. but never to this extent and for so long. Back Dr. Thurs. but will take weeks to get an mri approved I am sure.
I am grateful that for over 3 years my ET was stable and I didn't have any side effects that I could relate to it except some fatigue. I guess the 'honeymoon' is over.

Lea/ET/63

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Really glad your pulmo gave you the all-clear! Hope they will get a handle on white count soon. Back trouble is such a drag. I have severe scoliosis. Physical therapy gave me some good guidance about maintenance routine to keep the worst at bay. I used to get get good temp relief with massage. Hoping they can find some noninvasive relief for your sciatica.

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janemc | @janemc | 3 days ago
In reply to @lea123 "Thanks all. This is a great group! I have been on the MNP listserv but didn't..." + (show)
@lea123

Thanks all. This is a great group! I have been on the MNP listserv but didn't find that too helpful for me at least with ET and my stage. I am feeling better with breathing, the two extra HU brought my blood cells and platelets down so maybe that was the issue. Pulmonologist checked things out and saw no serious issue on his end. My white cells however are still going higher and I am in incredible back pain and with some sciatica. Whatever is going on there may be causing the white cell increases, i,e, inflammation. I have had back issues most of my life with degenerative disks etc. but never to this extent and for so long. Back Dr. Thurs. but will take weeks to get an mri approved I am sure.
I am grateful that for over 3 years my ET was stable and I didn't have any side effects that I could relate to it except some fatigue. I guess the 'honeymoon' is over.

Lea/ET/63

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"Feeling better with breathing" -- it's great to hear that! Good work, getting your platelet count down!

I am so sorry about your back pain. When your back hurts, life is really tough.
Have you ever tried lidocaine patches? They can give hours of relief. Lidocaine is absorbed through your skin, and doesn't interfere with either aspirin or HU. I've been assured by an oncology nurse that it's safe for me to get pain relief this way.

I was born with a little part of my spine missing. Swimming has been my lifelong salvation. Is there a Y in your community with a pool? Even if you just walk around in the water, it can feel so good. And maybe your Y will have a jacuzzi!

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hudson2019 | @hudson2019 | 3 days ago
In reply to @lea123 "Thanks, Not sure about my Dr. It has been a trend since Dec. with other cell..." + (show)
@lea123

Thanks,
Not sure about my Dr. It has been a trend since Dec. with other cell types increasing but platelets were up and down, though they are increasing the last one. Shortness of breath concerning. Not sure 1000 mg total more a week will have an effect, not checking for 4 weeks. This was sudden since Dec. with dramatic increases in the wbc, rbd and others, never have been in past 3 years and though ET was mainly platelets. Unless transitioning to something else. Will wait and see, I guess ER if shortness of breath worsens. No back pain so wouldn't think an embolism. Did make appt. with my initial Hopkins Dr. in DC that does a lot of research but won't see him until May 5th.

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The Shortness of Breath is Alarming Do you Have Heart Racing Did you have a Bone Marrow Biopsy Done

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schree | @schree | 3 days ago
In reply to @lea123 "Thanks all. This is a great group! I have been on the MNP listserv but didn't..." + (show)
@lea123

Thanks all. This is a great group! I have been on the MNP listserv but didn't find that too helpful for me at least with ET and my stage. I am feeling better with breathing, the two extra HU brought my blood cells and platelets down so maybe that was the issue. Pulmonologist checked things out and saw no serious issue on his end. My white cells however are still going higher and I am in incredible back pain and with some sciatica. Whatever is going on there may be causing the white cell increases, i,e, inflammation. I have had back issues most of my life with degenerative disks etc. but never to this extent and for so long. Back Dr. Thurs. but will take weeks to get an mri approved I am sure.
I am grateful that for over 3 years my ET was stable and I didn't have any side effects that I could relate to it except some fatigue. I guess the 'honeymoon' is over.

Lea/ET/63

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I have had ET for 12 years with no problems but started HU one month ago . I have back issues , leg pain & a rash, I go 4/1 for lab work & I hope all is good . Oh by the way I am 82

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lea123 | @lea123 | 1 day ago

Thanks for the tips and concern. Blood counts are lower now though white cells still increasing. Shortness of breath better.
I do have svts sometimes but not enough for concern and rare afib - Dr. suggested metoprolol. May try after other things are settled. Going back in another two weeks for appt. Blood work in another week, may call and make sure they didn't want it sooner due to the white counts still increasing. I did have a bone marrow biopsy 3 years ago when first diagnosed, it caused major disabling periformis issues that are better now but still happen.
Lea

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