I am Baffled
June 12, 2009 2:07pm
I must say I am at a time where I am literally baffled at the Endos here in Canada at least in Western Canda. The province I live in we have 1 …
Jennehle 
2:26am, September 20, 2009
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Jennehle
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Hey,
Doctor's?
Of course this is just blogging. But since they (doctors)are not going to help us get though the day to day. We will take a friend any where we can.
Sorry thing are so crazy.
Rae-
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Hey, was think about you. How are thing going? Medication get any better? Rae
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It help me to know my information can help others. They found my Tumor when I was 30 after a lot of doctors missing it. First looked into surgery, not the way you wnat to go. When they are removing the tumor which is fully intertwind with your pituitary. There is a very good chance they will take part of your other hormone and your body could still be putting out too much prolactine. So instead of one hormone you are two or more. Once I started with a Endo they started with the Parladel(Bromo) boy was I sick we worked up to 6 pills a day. Almost no effect on my prolactinoma. Then we started the dostinex, work up to two pills twice a week. Levels dropped pretty fast and after a year tumor did not show on MRI. Then I had twin, whole nother story. But after went back on dostinex (cabergoline) 2 pill twice a week and was good for 10 year. I understand a little what it is like to have a sick child. My son has a birth defect to one of his hands. Travis is 10 and had 7 sergery so far. But in no way can that compare to what you are going through with your daughter. My heart goes out to you. Your family will try but know, it is more then they can understand. For one thing we have good and bad days. And you will have alot of good days in a row. Then you have a bad one or two and they look at as if what is wrong with you. They just do not get this is a life long thing. It is very managable and you can have a great life just every so often there is a little dip. Rae
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Support Groups
Close Prolactinoma
I have 4mm Prolactinoma have been on 2.5mg of bromo Headaches are so bad that I vomit,moodiness,exhaustion, had my 2nd visit with my endo says the prolactinoma s not the blame for these side effects Here is my issue, he told me to come back in a Year! No extra blood tests or scans Should I ask for a second opinion because what I have read with others dealing with this is that there is more to treatment. Anyone with any answers because right now I feel very let down and still feel like crap????
Treatments
- Parlodel Too Soon to Tell
- Side effects are horrible!!!!
Close Hodgkin's Lymphoma
My daughter was diagnosed in Nov 06 with Hodgkins, 3rd stage. Happy to report that she has been in remission for 2 years She was just turning 13 when diagnosed and is now a feisty 15 year old! If anyone needs to talk or ask I am here. She was one of the exceptional cases in which the chemo affected her terribly. Like 1 in a 1000. Was quite the rollercoaster ride! Still is as the emotional turmoil she still experiences from the therapy and radiation is to me like post traumatic stress syndrome.
Treatments
- ABVD Working / Worked
- Chemotherapy Working / Worked
- Etoposide(?) ABVD-E
