Essential Thrombocythemia: Making treatment decisions

@eloise999, I have ET. No progression so far. Similarities are that my platelets go super high when I am not on hydrea. For instance, before hydrea they were 1,800,000. What is TN?

Triple negative. I do not know what my driver mutation is.

@nohrt4me
I got the results which said the nodules were benign. So thats good, only thing I asked my GP for a referal to a Thyroid specialist and that wont happen until early next year. I am so angry that my GP hadnt organised a referal for the specialist, when the first untrasound was done months ago., had to wait for me to ask, he is my doctor and should have done that. You really have to speak up for yourself these days. Good luck on Nov 3rd. Cheers Lynne

@lynnebgraham Great news! Glad you are seeing the specialist, tho. Yes, you do have to speak up. I am making my list for Nov 3. My GP retired, so I see the new person for the first time.

@lynnebgraham
Oh dear friends ! Please do not stay silent when you know that something is not right!! If a doctor dismisses your diagnosis then you must go elsewhere!! Time is precious and you must advocate for yourself!! It could be a matter of life versus death!! I get so angry when I hear people who are ill are treated like it’s nothing !! You deserve better!! Every person here would tell you this!
I will look for more information about your situation and update!!
Hugs and encouragements

Thank you so much for your concern. The medical profession should be aware of wait times, for specialist treatments. Using this information that the public would not be privy to, and be able to instigate an appointment in the beginning of treatment, in my case the nodules were not going to go away of their own accord and would need treatment or removal. Not a good time of the year to need any medical assistance. My specialist will be on leave for a month from middle Dec to end January, I just have to be patient and await their call. As I am an existing patient, and they have read all my tests etc, I am on a list for a cancellation if it comes up. Fingers crossed. In my state there isnt another specialist available to see.

@jsmedsrud, have you asked your Mayo team about your concern with unwanted weight gain? They may have suggestions.

@nohrt4me
How did you go with your specialist on 3rd?. Sorry to take so long to ask. I am seeing thyroid specialist on 1st December. They had a cancellation. I can't seem to win a trick lately. My 2nd haematologist has now left the clinic, so I am seeing a Dr at the Cancer clinic at our hospital. Went to have regular blood tests and they said don't bother your doctor has left and they didn't know when they were getting a new replacement. To top that off I had a mammogram 2weeks ago and got a call that I have to go down to Hobart, for further scans. Things do come in threes.

@lynnebgraham Thanks for asking! I saw my GP on the 3rd. She said to discuss with hematolgist on 16th to rule out it being a side effect of the ET or HU, especially since basinophils and red cells are low, and alkaline phosphatase and lactate dehydrogenase levels are high.

Then hematology called and said the hemo is on maternity leave, but I could see Nurse "Mary" the next week (23rd). Lucky Nurse "Mary."

I'm sorry that you have to run around to get more mammo scans. Is Hobart a long drive for you? My hemo is only 30 miles away, but travel for medical procedures gets to me. Fortunately road construction around the clinic is finished, so no confusing detours in congested city traffic. Hoping the snow holds off.

@nohrt4me
Hobart is roughly a 3-hour drive, appointment is at 9.45 am, so hubby and I decided to go the day before and spend a couple of nights down there. Then we don't have to rush in the morning. I have had to do this before, in 2007 and 2017, so it's not new. On both trips, there were no other problems to be found. Hopefully, this trip will have the same conclusion.
My hematologist, who is also 30 minutes away, never mentions other levels of my blood tests. What should I really be looking at. Hopefully, when I go to the new Cancer Clinic next year, I get more helpful advice. Hope all goes well with Nurse Mary.