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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: 2 hours ago | Replies (507)Comment receiving replies
Hi - My name is Ginger - I am 77 and was recently diagnosed with ET JAK2 in September of this year and have had the red feet and ankles. I also have red splotches (for lack of a better word) on the back of my left leg. These are not painful - just unsightly. I have a small level of numbness in both feet and in my left leg. These things are recent. My hematologist/oncologist prescribed hydroxyurea 500 mg daily. I had no side effects the first month. I had a bone marrow biopsy and it was confirmed that it was ET JAK2 . My platelets went from around 600 to normal within 10 days of starting the hydroxyurea. I was thinking all was great.....then the sores in and on my mouth appeared and my doctor took me off the hydroxyurea for a 5 day period and I am to start taking it again every other day. It has taken a toll on me - it was difficult to eat and swallow. I still continue with the low dose aspirin which I was already taking when I was first diagnosed. Now I am terrified to go back on a full dose of the hydroxyurea for fear of the mouth sores. This is all so new to me. Has anyone else had problems with sores in their mouth as a result of the hydroxyurea?
I wrote and posted this previously, but I must not have saved it properly because I cannot find it. This is such a great and informative place to learn so much about ET JAK2
Replies to "Hi - My name is Ginger - I am 77 and was recently diagnosed with ET..."
MOUTH SORES
Advice from Chemocare.com:
To help treat/prevent mouth sores…use a soft toothbrush, and rinse three times a day with 1/2 to 1 tsp of baking soda and/or 1/2 to 1 tsp of salt mixed with 8 ounces of water.
Eileen
Hi Ginger and welcome to Mayo Connect. As you already found, this is a great forum to ‘connect’ with other members who are sharing the same experience of Thrombocythemia. It helps to know we’re not alone in our medical journeys.
I was able to spot your previous conversation for you. To help you in the future, all you need to do is click on the little avatar (the little oval with a picture to the left of your reply) or the little cartoon person in the upper right. Both will take you to your profile page where you can see all discussion, comments and reactions. Here is your original post.
https://connect.mayoclinic.org/comment/777821/
You received an answer from another member here…https://connect.mayoclinic.org/comment/777871/
Did you see this reply from @eileen11108 in regards to your sore mouth?
I am really sorry you are having trouble with HU. Could you ask yr doc about anagrelide? Or Pegasus?
Some people just can't take the HU.
I had a couple of mouth sores at the very beginning, in addition to the mouth rinse drinking water will help. I started drinking water out of a 24 oz bottle (about 4 a day) and I haven't had any more symptoms at all. My hemo tpld me you want the meds in your body but you want to wash it out as soon as possible. I do spend quite a bit of time in the loo but I try to deal with it as best I can.
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The sheets given to me by my hematologist said
“To help/prevent mouth sores, use a soft toothbrush, and rinse mouth three times a day with 1/2 to 1 tsp of baking soda and/or 1/2 or 1 tsp of salt mixed with 8 ounces of water,”
Eileen