Essential Thrombocytosis

998 Posts | Page(s): Prev 12...76 77 78 79 80 ...99100 Next 

janielynn52 janielynn52
(Inactive)

RE: Essential Thrombocythemia

by janielynn52 on Sun Jan 25, 2015 04:07 AM

Quote | Reply
I am new to this blog. I was diagnosed 1 year ago with ET. Platelets are good now. Taking 500mg of hydrea daily. Fatigue and nausea are my main complaints. Also tingly legs at night. I have always been a walker. I feel so much better when I walk daily. Any suggestions with your 5 years of experiences with ET? I like reading these posts. I don't feel like I'm the only person who has this disease.

RE: Essential Thrombocythemia

by Margo48 on Sun Jan 25, 2015 04:51 AM

Quote | Reply
Hi Janielynn If the side effects trouble you than discuss these with your haematologist, he can adjust the dosage in such a way that it still keeps your platelets down. I saw my haematologist every 2 months and before I saw him, always had a full blood count test. Yes, I felt loss of energy at times, but felt better being active. So, keep walking if that makes you feel good, I suppose it is the blood circulation not being sluggish. Always keep yourself up-to-date via Google with latest developments and queiry your specialist. Never become blasé. Get to know your body best and you feel when there is something different. I remember that I took with the hydroxy urea a small 100 mg aspirin tablet as well. Do not know if they still advise that these days, but check with specialist. Hope, all goes well for you...ever since I was diagnosed I have heard of many more people who have the bone marrow disorder, so it is not just you. Have you had the JAK2 test done? Best wishes.

RE: Essential Thrombocythemia

by Margo48 on Sun Jan 25, 2015 04:52 AM

Quote | Reply
Hi Janielynn If the side effects trouble you than discuss these with your haematologist, he can adjust the dosage in such a way that it still keeps your platelets down. I saw my haematologist every 2 months and before I saw him, always had a full blood count test. Yes, I felt loss of energy at times, but felt better being active. So, keep walking if that makes you feel good, I suppose it is the blood circulation not being sluggish. Always keep yourself up-to-date via Google with latest developments and queiry your specialist. Never become blasé. Get to know your body best and you feel when there is something different. I remember that I took with the hydroxy urea a small 100 mg aspirin tablet as well. Do not know if they still advise that these days, but check with specialist. Hope, all goes well for you...ever since I was diagnosed I have heard of many more people who have the bone marrow disorder, so it is not just you. Have you had the JAK2 test done? Best wishes.

janielynn52 janielynn52
(Inactive)

RE: Essential Thrombocythemia

by janielynn52 on Sun Jan 25, 2015 05:53 AM

Quote | Reply
Hello Margo48, Thank you so much for your advice. I have had the Jak2 test and it was negative. I do take the low dose aspirin daily too. I will keep walking cuz it keeps me sane. But I know I need to communicate better with my hematologist. Thank you again. Take care.

RE: Essential Thrombocythemia

by Margo48 on Sun Jan 25, 2015 10:52 AM

Quote | Reply
Yes, communication is most important. As I think of a question I write it down and I always go with a list of questions to my next visit. Doctors are there to answer your concerns or explain your questions. Sometimes I even Email when I am really worried about a new development or leave a phone message with his office assistant. I always receive a response and advice. You know that I suffer these days also from metastized kidney Cancer , but I never stop learning or questioning. I do have established a very good relationship with my doctors over the years and that is important. Also, always ask for a copy of test results or the like. It is not only for you to get to lines your body's function nand reaction overtime, but I also take my 'medical' folder on any of my trips for quick reference in case I need assistance. Keep up the good work, always stay positive. Be happy.

RE: Essential Thrombocythemia

by Margo48 on Sun Jan 25, 2015 10:59 AM

Quote | Reply
Sorry, I see that the automatic corrector juggled up one of my words. ' it is not only for you to get to know your body's functioning and reaction over time, but I also. etc

RE: Essential Thrombocythemia

by daizyjune on Sun Jan 25, 2015 01:19 PM

Quote | Reply

Keep walking!I walk 3-5 miles 5 times a week, it is the best exercise you can be doing

RE: Essential Thrombocythemia

by rshah on Wed Jul 01, 2015 06:47 PM

Quote | Reply

On Jan 25, 2015 1:19 PM daizyjune wrote:

Keep walking!I walk 3-5 miles 5 times a week, it is the best exercise you can be doing

Hi All, Thanks for wonderful information.

My mom has been detected with ET. she has been on Hydroxyurea dosage of 1000gm a day. Her platelets are dwn to 5.0 .However her RBC count are also going dwn to 3.6.Is it beacause hydroxy urea decreases or breaks RBC along with Platelets. WBC are normal. Recently she underwent Bypass surgery.

It would be appreciable if someone can throw light on this.

Thanks in advance!

RE: Essential Thrombocythemia

by boisid on Wed Jul 01, 2015 07:23 PM

Quote | Reply

On Jul 01, 2015 6:47 PM rshah wrote:

On Jan 25, 2015 1:19 PM daizyjune wrote:

Keep walking!I walk 3-5 miles 5 times a week, it is the best exercise you can be doing

Hi All, Thanks for wonderful information.

My mom has been detected with ET. she has been on Hydroxyurea dosage of 1000gm a day. Her platelets are dwn to 5.0 .However her RBC count are also going dwn to 3.6.Is "" target="_blank" rel="nofollow">http://3.6.Is " target="_blank" rel="nofollow">3.6.Is it beacause hydroxy urea decreases or breaks RBC along with Platelets. WBC are normal. Recently she underwent Bypass surgery.

It would be appreciable if someone can throw light on this.

Thanks in advance!

Hello Rshah,

You are correct. Hydroxyurea, aka hydrea, does indeed suppress platelet production, but also white and red blood cells. While 3.6.Is somewhat low, the doctors look at hemoglobin level as just as, if not more, important.

As long as her doctor is monitoring the situation, Mom should be OK.

Best regards

Barry

RE: Essential Thrombocythemia

by CindyN on Wed Jul 01, 2015 07:44 PM

Quote | Reply

I haven't been on here in a while but got a new thing going on with my daughter. Her dentist said she need her wisdom teeth pulled. She is 19 now. So went to oral surgeron and of course talked to her onocologist and set up appt. The oral surgeron of course after x-ray said they need to come out. He onocologist wanted to run some blood work and talk to local dentist. They decided it was more of a risk to have them removed and are just going to watch and see how they do. Her platelets run 1.5 - 1.8 and she is on no meds. Dr. Tefferi at Mayo Clinic in Rochester took her of the Hydrea after she was on it for three years. Have any of you had a surgery not done because of this? Just don't know what to think about this. I haven't spoken to the oral surgeon since the local dentist and her dr decided to not do it.

998 Posts | Page(s): Prev 12...76 77 78 79 80 ...99100 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.