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  #1  
Old Fri Oct 21, 2016, 09:38 PM
White-Stone White-Stone is offline
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Question Super high platelets & out of control Blood Pressure

Hi, I am newly diagnosed with Myerloproliferative Neoplasm (MPN) early stage of essential thrombocythemia. My platelets are 1.3 million. Today I finally got to hear a Dr. agree with me that the high platelets are driving the BP skyward.

I start Hydroxyurea 500 MG on Monday. I also was diagnosed with breast cancer this last Tuesday. They are waiting for the platelets to come down before they do any further surgery.

Has anyone else had this BP/platelet problem?

Thanks for this Forum/Site. I am studying as often as I can. Learning to pronounce the medical terms is a challenge. YouTube videos help. I can hear 'doctor speak' without giving blood.
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  #2  
Old Sat Oct 22, 2016, 04:10 PM
chef4all chef4all is offline
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White Stone
Have the doctors check your magnesium levels in your blood work? In recent research for dh & myself I have discovered that this mineral when low in the body can cause the BP to rise. It will also cause the heart to have an erythema problem, check out the National Institute for Health on line.
This is only a suggestion, but I hope that it assists you
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  #3  
Old Sun Oct 23, 2016, 10:19 AM
White-Stone White-Stone is offline
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thanks for your input

Hello Chef5all,

Thank you for that information. No, I have not had bloodwork that included Minerals in quite a while.

It could be Magnesium. I believe a lack of it is also associated with leg and foot cramps, too, am I right? Can't get through a night without a whopper of a cramp lately.

I will look into that asap.

regards,
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  #4  
Old Mon Oct 24, 2016, 02:36 AM
lisa3112 lisa3112 is offline
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So sorry about your breast cancer diagnosis. Wow, they are high platlets. I am sure your heamatology team are getting all the info and research available. Good luck
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #5  
Old Tue Oct 25, 2016, 07:56 PM
Cheryl C Cheryl C is offline
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You've had a double whammy White-Stone! Sorry to read that. I agree you should have a mineral panel. Re the cramps - when you get your results check out your sodium level too. Sometimes low salt can cause cramps.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #6  
Old Sun Nov 20, 2016, 01:04 PM
White-Stone White-Stone is offline
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Smile update: improving

Last week I had another blood draw. A month of being on Hydroxyurea has paid off. My Platelets have dropped 500,000. Still have a long way to go but this is almost a 50% drop.

They gave the all clear for my breast cancer surgery in the first of Dec. It will be good to have that treatment started. I want it resolved. At least it is treatable and they give a good prognosis.

One day at a time. So far this is a good one. Hope you all can have the same.

White-Stone
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  #7  
Old Sun Nov 20, 2016, 08:30 PM
Cheryl C Cheryl C is offline
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Great news, White-Stone!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #8  
Old Mon Nov 28, 2016, 09:02 PM
White-Stone White-Stone is offline
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Unhappy Platelets up another 800,000, Rats

Went for a blood draw today, preliminary to surgery on 12-1. They are way high again and surgery is off.

Plus, I tested positive got Her2 Estrogen receptor on the biopsy and will soon be getting a Port and chemo for that. Maybe 12-8th?

Worse yet, my husband of 42 years died yesterday. That was a terrible blow. It is hard to focus on the cancer right now. One day at a time.

White-Stone
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #9  
Old Tue Nov 29, 2016, 01:36 AM
Neil Cuadra Neil Cuadra is offline
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My wife and I are so sorry to hear this, White-Stone. You have our deepest sympathies. This must be so hard for you. We agree that you can only take things one day at a time.
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  #10  
Old Tue Nov 29, 2016, 11:14 AM
Sally C Sally C is offline
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Dear White-Stone,
It's times like this that there are just no adequate words. Your health situation is bad enough - but to lose your husband in the midst of all this is almost too much to bear.
Regarding your breast cancer - they have made great strides in treatment of breast cancer. I just read about your type and it said it is very responsive to the treatments available as well as there are clinical trials for HER2 positive. My husband has MDS and his life was saved due to clinical trials.
Please accept my deepest and heartfelt sympathy in the loss of your husband. I pray that God will put His loving arms around you in the days and months to come.
Take good care.
God Bless,
Sally
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  #11  
Old Tue Nov 29, 2016, 05:33 PM
Cheryl C Cheryl C is offline
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So sorry to read of your husband's death, White-Stone. You've been facing one blow after the other haven't you. I am praying that God will give you the comfort you need and the strength and courage to be able to cope with the vicissitudes of each new day.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #12  
Old Wed Nov 30, 2016, 11:42 AM
White-Stone White-Stone is offline
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Thank you all for your kind notes

I am meeting Thursday for a Bible Study/Luncheon with some ladies I met at Church on Sunday and Friday I meet with a grief counsellor. I have many people to notify still, mostly his doctors but can't do that yet.

I have seem movies where women handle a loss such as this in a stoic fashion. I can not do it. Tears flow freely & my face is usually red from crying. I don't like to push my feelings on people but I manage better when I am out and not sitting at home, so they get a glimpse of what is in store for most all of us, if we are the lucky survivors.

Now I have to stay well for our dogs and to be available for whatever God puts before me. If I can in any way help someone else reach salvation and peace, my loss is worth it. I know my Husband is with Jesus and no longer in pain. If he is seeing me, I do not want him to be worried, I want him to be proud.
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #13  
Old Wed Nov 30, 2016, 09:56 PM
lisa3112 lisa3112 is offline
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Oh my gosh I am so sorry! Let the tears flow, its totally warranted. I hope your fur babies can give you some comfort. Please keep us updated on how you're going.
__________________
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #14  
Old Wed Nov 30, 2016, 11:52 PM
White-Stone White-Stone is offline
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Thanks & more medical news

My Blood Dr, says I will need a port and chemo for the positive on the JAK-2V617F mutation. She is making my surgeon and me nuts. Monday when I went in for a blood draw, the platelets were back up 800,000. She said she did not even want me having the 'minor' procedure to put in the port. Have to wait till the 5th and have another draw. Then if it is lower, she will let me get the port & possibly the remainder of my breast cancer surgery on the 15th. I am still taking the hydroxyurea 500mg but Monday, Wed & Fri, I take 2. Hope it kills lots of platelets quick, I want to get this other cancer treatment under way.

I have been thinking about not being as upset about my husband's death. God is in control and He may have saved me from my biggest fear. That my Husband would forget who I was. His memory/mind was going pretty quickly. That would have broken my heart. Not that that thought makes me miss him any the less. It just makes me realize I will not know the whole picture until after I die myself and then it won't matter. Even though he is bodily away, he is all around me. I will have to learn to live with him that way.
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #15  
Old Mon Dec 5, 2016, 02:25 PM
White-Stone White-Stone is offline
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Smile blood test today at 3PM

Here is hoping my platelets have come down enough to begin treating the breast cancer., or at least the HER2 positive. The waiting is irritating. I am filling my days shopping for gifts. Buying some for me, too. I love that part. Hope everyone has a good day, the weather here in North Central Florida is one of the reasons many people have moved here. Of course, the good Winter is balanced with sweaty Summer.

Cheers,
White-Stone
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #16  
Old Mon Dec 5, 2016, 07:19 PM
Sally C Sally C is offline
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I hope you got good news today White-Stone. And your attitude is amazing.
Take care and God Bless,
Sally
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  #17  
Old Tue Dec 6, 2016, 01:51 AM
White-Stone White-Stone is offline
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failed my blood test, next time I may use a cheat sheet!!!!

Well, they have me doubling up on the Hydroxurea 500mg. Try again next week. Wonder how long they will be able to put off the breast cancer surgery??? They have not even been able to check the lymph nodes.

At least we are getting some 'much needed' rain.

Maybe I will get the surgery for a Christmas present?

Cheers, ya'll.
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #18  
Old Tue Dec 13, 2016, 10:42 AM
White-Stone White-Stone is offline
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Smile Gurr! Rats! etc. Happy Holidays all. . . . I mean the last part, too.

The platelets have bambazooled me, again. The doubled my meds and they have stayed in the 800,000's. They say they 'don't understand why.' Well, don't ask me! I am now taking 3 500mg hydroxurea a day and 2 500mg iron capsules. "We'll check again next week," sounds like a broken record. They said, maybe it is because my iron is low.

It seems that treating this condition is not the walk in the park they sort of led me to believe.

A happy part of going there yesterday, one of the women who work the appointment desks had on a tiny hat she had made in Holiday theme. There was green net with a tiny white bird and other ornaments. She said she made 3 so next Monday when I go to be tested I will get to see another. I took a picture with my phone but it is just a cheap Verison and doesn't take very clear pictures. I used to use a Motorola, that took beautiful images.

Weather here is lovely, left windows open over night and only needed a light cover. I have to focus on the nice things and not let this 'condition' get me down.

Talk to yo all next week,
Hugs for everyone,
White-Stone
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #19  
Old Tue Dec 13, 2016, 04:54 PM
Hopeful Hopeful is offline
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Hi White-Stone,

Is your hemoglobin normal, despite the iron deficiency? Are your blood cells normally sized/shaped?
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.

Last edited by Hopeful : Tue Dec 13, 2016 at 05:15 PM.
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  #20  
Old Tue Dec 13, 2016, 09:00 PM
White-Stone White-Stone is offline
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Smile

Quote:
Originally Posted by Hopeful View Post
Hi White-Stone,

Is your hemoglobin normal, despite the iron deficiency? Are your blood cells normally sized/shaped?

This is something I will ask my Dr. I will be talking with them tomorrow. Todat they called me and made a big deal about me getting to the hospital ASAP for another blood test. Seems my Potassium was high and they need to verify before treating me for that. I found no mention of Potassium on the list they sent home with me. Unless hemoglobin is abbreviated HGB, I saw nothing for it on the list, either. The HGB was 14.4??

Thanks for your reply. At least I have something to ask about.

Take care, WS
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #21  
Old Tue Dec 13, 2016, 10:38 PM
Cheryl C Cheryl C is offline
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Hgb is haemoglobin, and 14.4 is good!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #22  
Old Wed Dec 14, 2016, 03:04 AM
Hopeful Hopeful is offline
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Hi WhiteStone,

Here is a link to an interesting paper entitled "How I treat Essential Thrombocytosis".

http://www.bloodjournal.org/content/...o-checked=true

I am just wondering if they ruled out other diseases like iron-deficient PV?? Here is a quote from the article:

"Although reduced serum ferritin and/or absent bone marrow iron stores may occur in patients with ET, we consider the combination of microcytic red cells and a normal hemoglobin count in a JAK2 V617F-positive white patient highly suggestive of iron-deficient PV."

Just giving you some more things to discuss with the doctor.

Good luck at your appointment!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #23  
Old Wed Dec 14, 2016, 09:44 AM
White-Stone White-Stone is offline
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Thumbs up

Cheryl, Thanks for breaking the code for me. I'm glad something is good.

Hopeful, Thanks for that information. I will see them again on the 19th and check with them about it.

Yesterday, the day after my blood work, the Dr's office called. They said I needed to go to the hospital and get blood drawn to test my potassium level. They said it was very high when I had the draw on Monday and they need to make certain before they issue pills to lower it. Goof grief!!

Well, I feel great, except for this raging high BP 170/93 (woke me up at 6AM with pain in my finger tips). I know it is the high platelets causing the high BP. They are doing what they do to lower them. They said it is odd that after the 1st week of Hydroxurea they dropped from 1,300,000 to 800,000 and there they sit. Guess I have to wait and see what happens.

I love this forum!
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Myerloproliferative Neoplasm (MPN), positive JAK-2V617F mutation, currently taking Hrdroxyurea 500mg 3x's daily and PolyIron 150mg 2x's daily
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  #24  
Old Thu Dec 15, 2016, 06:01 PM
White-Stone White-Stone is offline
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Wink just a false alarm on the high potassium

OK, thanks for the 30 mile round trip for nothing. Not to mention scaring me to death.
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