Timeline.....

Just for reference I am going to do a quick and dirty timeline so that I and anyone that may read this can see and maybe give some input on my situation.....

March 2008 - diagnosed w/ 7mm prolactinoma due to infertility.  Prolactin at 70.  Started on Bromo and Clomid.

April 2008 - Pregnant and went off meds.

June 2008 - miscarried and had a D&C.  Went back on Bromo and Clomid.

Nov. 2008 - Pregnant

Aug. 2009 - Had a beautiful bouncing baby boy!  Nursing and on zero meds.

Beginning of Oct. 2009 - Blood tests show Prolactin is at 225 schedule MRI.

end of Oct. 2009 - MRI show my tumor has grown to 1.2 cm.  

Beginning of Nov. 2009 - Prolatin is at 241.  

end of Nov. 2009 - see endo, neurosurgeon and eye specialist.  They recommend for me to stop nursing, go on meds or get surgery.  I decide I want the surgery to just "get this thing out of my head once and for all".

Dec. 2009 - start researching like crazy for alternate treatments.  I start taking Vitex.

Feb. 1st 2010 - Continue my searching and start on Frankincense.   Decide to avoid surgery at ALL costs!

Feb. 13th 2010 - Prolactin is at 201!  Went off Vitex.

Feb. 26th 2010 - Prolactin is at 155.  

April 13th 2010 - Prolactin is 108.

May 6th 2010 - Start weaning process.

June 3rd 2010 - After being off frankincense for 2 weeks Prolactin is at 130.

June 26th 2010 - back on frankincense since 2nd week of June.  Prolactin is at 110.

June 29th 2010 - had an MRI.  Shows tumor at 1.2 cm, but looks different.  Done nursing...mixed feelings.

So, there is my time line.  The way I see it....from the time of my MRI in Oct to the beginning of Feb. I didn't have any blood tests and wasn't on any medication and was nursing (producing enough milk for at least 3 babies) so i have no idea what my tumor did during that time....my questions for my doc are:

-Is it possible it grew during that time and has been shrinking since then?

-What specifically made him think I had surgery since Oct.?

-What does he think in general about my alternative methods of shrinking my tumor?

-What his recommendations are.

Are there other questions I should ask????  I'm sure more will come up.

I've dodged a bullet...

March is here and half way over and just the other day I realized I was slated for transsphenoidal surgery this month!!!  I can't tell you all how excited I am to have dodged that bullet so far!  And now that I know more about it I truly feel what I have dodged is worse than a bullet, for there are things worse than death!  It seems hard for me to believe that just last November I was pushing and kind of looking forward to the surgery to get this tumor OUT!  I want to have more kids and the Neurosurgeon seemed to think this was the best option since the tumor was pressing against my optic nerves and was close to wrapping around the arteries in my brain.  He thought it would be best to take it out now as complications would be less severe since it was not huge.  "Complications?" I asked  "What might that be?"  
a)1/1000 die or have a stroke.  
b) 1-2% get diabetes insipidus, which will lead to frequent urination and excessive thirst, since the kidneys will no longer adequately concentrate the urine. This can be controlled with a nasal spray or pill form of a medication called DDAVP.  It's side effects include but may not be limited to: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); burning, redness, swelling, or pain at the injection site; calf pain, tenderness, or swelling; chest pain; confusion; coughing up blood; fainting; loss of appetite; mental or mood changes (eg, agitation, irritability); muscle weakness, spasms, or cramps; nausea; one-sided numbness or weakness; personality changes; seizures; severe or persistent dizziness; slurred speech; swelling; unusual headache or restlessness; unusual tiredness or sluggishness; unusual weight gain; vision problems; vomiting.
c)If they take to much it would mean replacement hormones, such as 
1) thyroid hormone, side effects:  Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); changes in appetite; changes in menstrual periods; changes in weight; chest pain; diarrhea; excessive sweating; fast or irregular heartbeat; headache; inability to tolerate warm or hot temperatures; nervousness; pounding in the chest; shortness of breath; trembling; tremors; trouble sleeping; vomiting.
2) coritisol, side effect for short term use: Thin skin, Fluid retention (oedema), Susceptibility to bruising, High or increased blood pressure, Susceptibility to infections, Build-up of fat around the face, chest and abdomen, Thinning of the limbs, Osteoporosis (thinning of the bones), Bone fractures, particularly in the spine and ribs.

Long term Use: Fatigue, Nausea and vomiting, Low blood pressure, particularly when standing up from a sitting or lying position (orthostatic hypotension), Low blood sugar, Shock, Coma

 3) estrogen replacement, side effects:  heart disease, breast cancer, stroke, blood clots, and mammography abnormalities
4) testosterone, to many side effects to list...here is the link:  TESTOSTERONE REPLACEMENT THERAPY

I would be on these and other such things THE REST OF MY LIFE.  One of the long term side-effects of many of those "replacements" is a shorter life span.  As a 28 yr old mother, that IS NOT AN OPTION!  Then to top it all off only 60% of those who have surgery are cured.  The rest have to have surgery over and over and over again!   Therefore increasing the chance of needing these replacement hormones. 


Needless to say, I'm glad I did some research before jumping off that boat!  I still can't believe I was going to go through w/ it!  I'm so glad I found an alternative that is SHRINKING MY TUMOR NATURALLY!  I say many prayers of thanks everyday for this miracle!