Peace of Mind Granted

My recent hormone levels indicate the acromegaly is still in remission and I can relax. I don't have the details right now but I've been assured by neurosurgeon that everything is good and my GH suppressed. I'll post the hormone numbers later. My IGF-1 level is still pending but I am not worried about that since the growth hormone suppressed below 1.0.

Dr. Kelly really went out of his way to help me and for this I am so grateful. The endocrinologist explained his stance on why he refused to repeat blood work. He feels that when IGF-1 and prolactin levels are normal this is sufficiently indicative of remission; therefore, the glucose suppression test is not needed. He said he thought I was the only one that asked to have the suppression test done and did not realize the suggestion came from the neurosurgeon. He felt the MRI report was "vague" in description of the mass(es) and it did not warrant further investigation. He made it clear that he disagrees with having the suppression test regularly as definitive testing even when there is questionable residual on the scan.

As you can imagine I am VERY relieved that the blood work is normal, especially when I consider my options concerning growth of any residual tumor next to my carotid artery. The location deems it inoperable. Dr. Kelly mentioned this shortly after my surgery when the macroadenoma was removed three years ago:

- August 31, 2005

“...should this [2mm] area in the cavernous sinus prove to be residual tumor, it would be an ideal target for radiosurgery and would likely not be amenable to further surgical removal given its location within the cavernous sinus.”

Given my endocrinologist's reluctance to put my mind at ease by ordering simple blood tests, I am considering moving any future appointments to a different doctor. I prefer to go to an endocrinologist that has an active interest in researching acromegaly, and so I am looking into MD Anderson Cancer Center in Houston as a possibility. Although it is evident I am still in remission, I shouldn't feel that I am annoying my doctor when I voice concerns about symptoms I am having or fear returning tumor. This is especially true when it is explicitly stated on MRI results that there is an area that is suspicious for residual tumor and it is slightly larger. There is no pathological evidence to support recurrence of tumor, but this area previously measured 2mm after surgery and it is now aprox 8mm. The neurosurgeon recommends that blood work be assessed every 6 months to be sure I remain in remission - this is just standard protocol.

Then & Now

Click to Enlarge

I am posting the most recent scan for comparison to previous years. The area in question has always been there and not changed in size. The scan I had done last year looked like the one I had in August of 2006 (seen above) so I am not posting it. The films have been sent to my doctor and I am awaiting his interpretation of my recent MRI.

**Note: the red arrow is pointing to the macroadenoma I had removed. The other arrow is pointing to tumor that had grown into the cavernous sinus on the carotid artery. This is the suspected residual. My labs have been in the normal range, and so the area in question has been considered to be scar tissue.

Prolactin Level While Nursing

Visit Source: kellymom.com Breastfeeding & Parenting

(Normal value ranges may vary slightly among different laboratories)

I got a call from my endo this morning. My prolactin level is 4.9. I guess this explains the lactation problem. My (pre-pregnancy) prolactin was 5.2 last year. I am amazed that I am producing any milk right now. I am so glad I had this checked out. At least now I know what my daughter's low weight is caused by; there is no doubt that she is not getting enough breastmilk. The doctor said this is "almost surely" due to my pituitary condition, and there is nothing I can do to increase my prolactin level. It is interesting to note that I did not have a pituitary condition (that I knew of) before I had Danielle. I asked if I needed to come in and discuss this further with him, but his nurse said he had no appointment available until November.

I feel like it's futile to try and continue nursing Danielle. I will feed her what little I can, but since she is weaning naturally, I expect I will mostly likely stop altogether soon. The bottle is certainly doing a better job than I can right now. I plan on going in for my annual MRI some time this month.

Feeding Baby Post Surgery

A couple weeks ago I started getting concerned about my daughter's weight. She seemed awfully small compared to what my other three children weighed at her age because she's not as chubby as I remember my other kids being. I began weighing her on the scale at home and noticed she wasn't gaining weight since her 4 month check up in June. I went digging through my children's baby books to see what their weight was at 6 months. All of them had more than doubled their weight and were above 16 pounds. Danielle was barely 13 pounds (she weighed 8 1bs 4 oz in February). I began to suspect my milk production was diminishing. At 4 months old Danielle began nursing constantly and her hunger wasn't satisfied so I started feeding her solids also to accomodate for her appetite. She wasn't showing signs of dehydration and all seemed normal except for her feeding frenzies. I was still nursing her around the clock, but I wasn't sure I was keeping up with my daughter's needs.

I took Danielle in for her 6 month check up last week and although she is doing well, her weight is in the 5% range (13 pounds 11 ounces). My suspicions were confirmed - she is under weight. Her little growth curve has taken a downward turn. I asked the pediatrician if he thought maybe she wasn't getting enough breastmilk and he said it was possible given my history of pituitary surgery; however, he was not too concerned because my daughter's length and head circumference is growing nicely. He recommended I try to up my milk production using Fenugreek, but he suggested I ask my doctor first because of my medical history. Fenugreek spurs on prolactin and the pituitary tumor I had was both prolactin/growth hormone producing so he wasn't sure it was safe for me. I could supplement (optional) and give her some Poly Vi-Sol vitamins to help.

When I got home I tried expressing milk during feeding time to see how much milk I was producing and I could barely get an ounce! This is very abnormal for me. I called my doctor and told him what was going on and wanted to see if there was any way to know whether something was wrong with my pituitary function and he said no. He said I cannot take Fenugreek or anything that would help with milk production because it might spur on tumor growth. He advised I supplement since there is suspicion of milk depletion.

This is strange - something's wrong. I fed all three of my other kids with ease for at least a year. Although I wondered if there would be an issue breastfeeding Danielle post-pituitary surgery I had no problems right after I delivered her. Her first few months she was thriving so there was no question as to whether I could breastfeed successfully. Now it appears I am not producing enough milk. I don't know what changed from May to now. I have drank more fluids and done everything humanly possible to change this. In light of the situation I am going to have to supplement and see if it helps with Danielle's weight gain.

Planning Ahead

I have recently received a flier from my neurosurgeon, Dr. Kelly, about two websites that have been created. They are very patient-friendly and offer an abundance of support and information regarding treatment for pituitary tumors:

Neuro-Endocrine Tumor Center at Saint John's Medical: "NETC's new comprehensive website is filled with outstanding current and accurate information. The website is designed for the patient. Dr. Kelly spent many hours writing medical content and meeting with the web-technicians to ensure that patients can use the site for education as well as a tool to help themselves and others...take time to watch a couple videos of our past support group meetings with friends and family!" - Sharmyn McGraw, Neuro-Endocrine Tumor Center's Pituitary Support Group Facilitator.

*Please note: NETC is now known as Pacific Neuroscience Institute.

Meet Sharmyn Mc Graw: A patient of Dr. Kelly's and former Cushing's sufferer. She has been in remission from the disease for several years. She is head of the Neuro-Endocrine Tumor Center's Pituitary Support Group in Southern California.

I would encourage you to take the time to sift through both sites. Treatment for pituitary tumors can be a life-altering experience; therefore, if you are thinking about having surgery or have been told it is necessary, it is important to be as educated as you can and plan. Dr. Kelly has put together an informative video where he addresses many questions people have when preparing for surgery. You can click here to watch the video or follow the link on the right side of my blog.

**Warning: the video does show a graphic video of the surgery being performed.