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 hate MRI's

Have I ever mentioned how much I HATE MRI's???  They strapped me down after giving giving me two IV's....one unsuccessful the other semi-successful.  Then they had me hold my own torture device (the contrast syringe) and had me hold 100% still as they backed me into "the machine".  After much contemplation, I have decided that once you are in there and the noises have started it is like having someone sit on your chest while you are on your back and having them rhythmically tap you on the forehead while telling you to "name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, name ten candy bars, "  You can barely think of your own name, much less ten candy bars!

When i was a kid, my uncle tried raising sheep.  I was around 9 or 10 at the time and was the perfect fit for the wool stomping position :)  The attached an 8 foot tall bag to the top of the shed and tossed wool into it.  Once it got about half way full I would hop in and jump and stomp the wool down.  If I was lucky I would pull myself out before they threw more wool in....if I was not, it would come down on top of me and I would feel like I was going to suffocate before wiggling my way above the wool.  Not to mention the ticks!!!  Let's just say that after that, I was extremely claustrophobic and the MRI machine reminds me a bit of the wool bag!

When the annoying, rhythmic buzzing noises are not being made, all I could hear was a noise that sounded like a sick squawking bird.  It was quite disturbing.  I tried so hard to fall asleep, but the IV was bugging me and the table kept shifting so it was nearly impossible for me to take deep enough belly breaths to help fall asleep. Anyway, the overall experience left me extremely anxious the entire day.  Luckily I had both of my boys were waiting for me at home and that helped greatly.....

.....results are forth coming.  I'm really hoping it has shrunk, but as long as it is not growing I will try to be happy!  Considering my rate of growth was quite rapid while pregnant I will try not to be disappointed if it hasn't shrunk a ton.  Plus, I am nursing (well, trying unsuccessfully to quit) and I know it would be very hard to shrink it while nursing.  I really want to get pregnant again in a bit and I don't want to get pregnant until the tumor has shrunk a bit.  My levels were at 110 last week, so they are going down again, but not as fast as I would like.  I guess patience is not my strong suit :)  Wish me luck!

June 29, 2010

Is the big day for my MRI.  It's a huge day for me and I am excited and nervous.  I hope to have Tux weaned by then although I kinda don't think it will happen.  It is my goal though!  The little man makes it so hard!  He loves nursing and so do I!  I've been trying to replace his morning nursing w/ a bottle and it makes him sad and so it makes me sad!  Not to mention it is extremely painful by about noon.  Anyway, I am excited to see what this thing in my head has been doing in the last 6 months.  I need to call my neurosurgeon and get my previous MRI pictures back so we have something to compare too!  I can't wait to tell him about my levels and hopefully the MRI will hold some good news as well :)  Wish me luck....again....

MRI date coming soon!

It is almost time....I am going to get an MRI soon!  I still need to call my Dr. to set a date, but I'm hoping to schedule one before the end of June.  I have mixed feelings about it....I am super claustrophobic and I am not looking forward to the end of nursing, but I have a good feeling about the tumor!  I am sure it is shrinking and I can't wait for this confirmation!  My headaches are gone, I have a lot more energy and I have lost weight.  My prolactin levels are down drastically from February and I just plain feel good!  I'm happy that I can raise my son w/out the debilitating side effects I got from the Bromo and I hope to be able to have more babies w/out fertility meds.  I have a better outlook on life in general even on a rainy day like today...Stay tuned for the MRI date!!!

Weaning....

I have decided to wean Tux. For most people this may not be a big deal, but for someone w/ prolactinoma it can be quit difficult! Since I hate the medications that makes it easy for me, I will not be going cold turkey. I started replacing one feeding w/ a bottle yesterday and WOW....not so fun for either of us! My babe loves nursing and so do I. He's never taken a bottle well and I've always had MORE than enough milk for him and probably another baby to boot! I want my prolactin to continue to drop and hopefully get to where I can get pregnant again w/out taking all the bromo and clomid, plus I want to have another MRI soon and that is much easier when I am not nursing.

Anyway, so yesterday was the first day I gave him a bottle. It didn't take long for my body to realize Tux had missed a meal and I was in a fair amount of pain! I applied peppermint oil (reduces lactation) and gritted my teeth. Tux did not take the bottle right away, it took a half an hour of crying and distraction before he finally latched on. Phew! Hopefully today will not be as bad on either of us....his next meal is coming up as soon as he wakes up from his nap. I thought ahead and have already applied the peppermint, so hopefully that will help and soon my body will get used to this skipped meal. The plan is to cut a meal out every week or every other week until all four feedings are formula :( It makes me sad, but I need to get my body back to normal before the next one can be on his/her way!

Specialists Specialists specialists

 I went to 3 specialists in Utah to see what is up w/ my head. The tumor is definitely pinching my optic nerves, but not too much yet. It is growing rapidly. It has tripled in size in the last year and a half. Most of that probably has been occurring since I started nursing, so in the last 5 months. Here are the results in a nutshell....
1)Endocrinologist (hormone Doc): My prolactin is out of whack(we already knew this)I can take pills the rest of my life or have surgery.
2)Eye Specialist: I did a field of vision test and I am not losing my eyesight yet....I will be doing these tests every other month while I continue nursing.
3)Neurosurgeon: It would be best for me to get surgery sooner than later. As the tumor grows it will be harder to operate and get everything and not get stuff that they don't want to get. (Sorry I didn't word that better...)
Options:
a) Quit nursing immediately, Medication, blood tests and MRI's the rest of my life monitoring the tumor and hope it starts to shrink. If it continues to grow I will have to have surgery anyway.
b) Brain Surgery. If surgery goes well I will not have to be on medications the rest of my life and it will be much easier to get pregnant in the future and I will be able to nurse. If they don't get all the tumor, it will grow back and I will continue having the same problems. If they get too much of my pituitary gland w/ the tumor I will be on hormone replacements the rest of my life and I will never be able to nurse and it will be hard to have kids.

So, there is my predicament. I will continue nursing for the next few months while getting blood tests and vision tests every other month to make sure the tumor is not affecting me until we decide what to do. I will also be taking herbal supplements (Vitex) while we are deciding and while they are monitoring me to see if that helps. If that helps, I will probably do vitex long term and have another MRI in a bit to see if it shrinks on vitex. That way I can nurse and hopefully keep this thing from growing at the same time as nursing is the main thing that makes it grow.

Currently I struggle with headaches (almost 24/7), lack of energy, and out of control milk production.

From Micro to Macro (A brief history)

So I decided to post a little background for those interested.  I was diagnosed almost 2 years ago with hyperprolactinoma due to infertility.  My levels at that time were 60 and my MRI showed a tumor 7 mm.  My doctor put me on bromocriptine and clomid.  I was pregnant the next month!  We were so thrilled!!!  9 weeks later we miscarried.  We didn't find out until my 12 week appointment when they doc couldn't find a heartbeat and so he did an ultrasound and confirmed what the heartbeat monitor told us.  After that, I went back on Bromocriptine and clomid.  I was on them for 5 months before we concieved again!

Last August I gave birth to a beautiful, healthy baby boy.  I started nursing and I started getting the headaches.  (I presently struggle with headaches, loss of energy, and milk production that is out of control!)  Once my baby was about 2 months old I talked to my obgyn about my prolactinoma and we got that ball rolling again.  I had another MRI and a series of bloodtests.  My tumor went from 7mm to 1.2cm from the time I was diagnosed and my prolactin was up to 240!  (I think one of the reasons my prolactin and tumor are out of control now is because we never got it under control before I got pregnant.) It was suggested that I go to a Neurosurgeon who suggested I go to an , Endocrinologist who suggested I go do an Eye Specialist....needless to say, it was a busy day!!!  I will post what all of them said in my next post.  I have a lot of options so consider so wish me luck!