I had a tumor friend email me recently and ask me some questions that I just didn't have the answers to, so I am opening it up to my readers to help! Here we go:
Do you know anyone that has a tumor that is nonresponsive to medication?
Do you know the implications of a nonresponsive tumor?
Do you have any info or articles on this?
Any takers???
Hi Shy,
ReplyDeleteSo glad to hear that the oils worked for you. I had ordered my Frankensense but to no avail, my prolactin levels did not go down and the tumor did not shrink. As you may remember, my tumor was nonresponsive to both Cabergoline and Bromocryptine as well as Chinese medicine and acupuncture. My doctors did not know what to do other than keep upping my dose which only made me feel sick.
We found out that starting in November '10 our insurance company entered a relationship with the Mayo Clinic. I made an appointment and hauled myself to Minnesota on Nov 1st. Talked with one of the top endos in the country. She told me nothing that I had not heard before except she reffered me over to the nurosurgeon there who specialises in pituitary tumors, Dr. Meyer. He looked at my MRI, and while not certain, believes that what I have is not a true prolactinoma at all, but instead is a non functioning (nonsecreting) adenoma that is causing the stalk effect (where the flow of dopamine is blocked from the pituitary gland).
I have the option of just living with the tumor and monitoring it for growth, but seeing that I want to have a family and feel like myself again, if at all possible, I have elected to have it surgically removed. I have struggled with this thing for too many years and want it out of my head for once and for all.
I am scheduled for surgery in just a few days (Feb 10th). They will be doing transspheniodal endoscopic surgery and I will be in the hospital for 24hours. Once they take the tumor out they will stain it to determine exactly what type it is (prolactinoma or non-functioning).
I will definately let you know how it turns out for your friends sake.
I think the implications of an unresponsive tumor can vary depending on what kind of tumor it indeed is. Of course there is the risk of it growing and the complications that can lead to. But living with hyperprolactinemia has its implications too. I think, though that many doctors do not want to consider these and will not discuss them. Such as weight gain, decreased motivaiton and passion for life, depression, weakness, other physical manifestations of high prolactin and of course infertility. I have read that there are links between high prolactin and some kinds of cancer, but nobody wants to talk about that. I have felt like less of myself the longer this gose on. I have no energy, digestive problems, weight gain (inspite of reguar exercise), no desire for things that I used to love. I think the chance to get my old self back is worth the risk of surgery.
As far as articles, there are so many out there on the web. But endocrinology is notorious for being the worst in keeping up with the latest research (and for doing new research in the first place) so the information today isn't much more helpful than what they knew back in the 80's.
Hope this is helpful to your friend.
Hi Alex!
ReplyDeleteMy name is Erin and I am the "tumor friend" that was wondering about nonresponsive tumors. Is your tumor a micro or macro adenoma? Mine is micro and my prolactin is only 31 (but it won't budge!). The docs are doing the same thing...I just was increased to .75mg of cabergoline twice a week. I am supposed to go back for bloodwork in 2 months. I sure hope something happens because this is so frustrating! Crazy that I was having a menses while on birth control and as soon as I stopped it-so did my menses. I know birth control is a treatment for prolactinomas...so why did that work and not the cabergoline???? Thanks for the information you provided and good luck with your surgery! Please keep us posted!!!
Alex! Best of luck with your surgery! Please keep us posted on how it goes! You will be in my prayers.
ReplyDeleteAny update on her surgery? Hope all went well! I'm kinda stuck in the middle here. My tumor responded greatly at first. From 88 down to 44 in 6 weeks. However, after upping the dosage to try and get it down under 24, 6 weeks later I am still at 36. Yes, a bit of a decrease, but not enough. They doubled my dosage AGAIN (ugh, 1mg 2x weekly) and I feel awful. Chest pains, my boobs hurt like CRAZY, and I am sooooo tired I can barely function. I called today and the Dr told me to go back down on the meds, but at that dosage my levels weren't low enough. Stuck. Any help? I know Shy, I'm about ready to ditch all this and go the natural route but my husband (for now) isn't having it.
ReplyDeleteI haven't heard from her! hopefully she is ok and will update us soon :) Kendahl, I'm sorry to hear that! That is an awful lot of Cabergoline!!! That just plain sucks! I have not heard of many people that have been on that high of a dosage :( It's no wonder you are having such horrible side effects. Erin, that posted 2 above you just emailed me and told me her levels are going down now and she is on .75mg. Hopefully your hubby will give in :) My levels went down faster than ever when I was taking both at the same time and the my side effects (severe depression) is non-existent when I am on frankincense too. If he's worried about how much it costs there are ways to offset the cost. It's what I have had to do in order to take it as much as I have. Let me know if I can help out at all. I hope hope hope it can go down without so much cabergoline. that is just crazy!
ReplyDeleteHi! Sorry it took me so long to get back. I am safe and sound now and I haven't forgotten about you guys! Thanks for thinking of me!
ReplyDeleteErin ,I hope you are well. First before I tell you about the surgery, I wanted to comment on one thing. As far as I know, Birth Controll pills do not actually treat hyperprolactinemia/prolactinomas. They help regulate your other hormones which help give a "cylce" but not a true one with ovulation. Dopamine agonists are the only traditional western medications that I know of that actually address the issue of prolactin.
I had my prolactinoma surgery on 2/10/11 at the Mayo Clinic, Rochester, MN. The surgery was clean and no major complications immediately after. The morning after my surgery they did blood tests. All good news. My prolactin had gone down overnight from 90 to 3! My cortisol levels were high but safe at 135 and my sodium levels were normal as well.
The next week was spent focused on my nose. They had sprayed some sort of packing up there and I could only breathe through my mouth. This was uncomfortable and made it hard to eat and sleep well. It eventually came out with the help of a nasa irrigator and feels ok now with just minor congestion.
A week later, and back at home in Denver, I started to feel very sick. I was weak, confused, extremely fatigued and had chills. Mayo had given me a pamphlet explaining to go to the ER if I had any of these symptoms. I was admitted to a local hospital here in Denver. They found that both my Cortisol and Sodium levels were very low. Cortisol levels can affect sodium concentration by the way. At first they put me in IV salene which made everything worse and tried to blame my condition on a non-existant urinary tract infection. They eventually gave me IV hydrocortisone in very high doses which made me feel a whole heck of a lot better at first. I was also put on sodium suppliments as well. After 5 days in the hospital my sodium levels were up high enough to be discharged and I went home with Rx hydrocortisone pills.
They started me out at home on 20mg 2x/day of hydrocortisone. I was extremely energetic after this but started to notice my skin getting very bad. I had problems with acne with the prolactinoma before surgery. The week after surgery, my skin miraculously got about 80% better. But the high dose Cortisol ruined all of the good progress.
I am seeing a local Endocrinologist now and she has already lowered my dose to 15mg AM, 10mg PM and then hopefully lower later. And eventually the hope is that I will not need it at all.
I learned that sometimes after surgery, the amount of ACTH secreted by the pitutary is lessened, which causes the adrenal gland to produce less cortisol, which can in turn cause an increase in vassopressin (ADH) which decreases sodium concentration and causes fluid retention. All of this is the pits and I'm hoping that I will be off of this cortisol soon!
Anyway, I got a call today with my latest labs. Endo said everything was in normal range. My 9:30 AM Cortisol (after 24 hours off of hydrocortisone suppliments) was at 7 (normal for that time of day is 6-25ish). My sodium was at 138 (normal is 135 to 145). It sounds as if maybe I will start to self regulate soon but Endo will not be able to tell until later.
So, anyway, these complications have not allowed me to expereince the full benefits of the surgery yet, but hopefully I will have good news soon. I'm looking forward to having a natural cycle again and better skin.
All in all I'm glad I went through with the surgery. I think that when all these complications are sorted out, I will feel more like my old self. Even if I have to be on cortisol replacement long term, It could be a lot worse.
I will keep you updated in teh weeks to come when I learn more or if more good things happen.
Thanks for your prayers!
-Alex
Kendahl,
ReplyDeleteI know your pain! :(
My prolactin started at 90. After a month on Cabergoline, it went down into the 40's too. But after that it continued to rise again. Cabergoline and bromocryptine could only keep it as low as in the 70s. My highest dose of Cabergoline was 5mg/week!!! That was awful! I hated cabergoline so much...especially when it wasn't doing a dang thing for me! My tumor was growing all the while too!
I finally went off of it which felt very very good. (although prolactin rose to a high of 112).
I didn't want to risk heart problems by trying even higher doses. And I wasn't happy with life with a prolactinoma. So that is why I elected to have surgery done.
I think you should try every thing you can before going the surgical route... especially if your levels continue to lower. I noticed that the side effects of cabergoline lessened the longer I was on it. But it still was rotten. I hope that more people will find help in the frankensense. It makes sense to me and was so frustrated when it too did not help. Who knows, I may go back to it soon anyway. What do you think Shy? For maintenance?
-Alex
Hi Alex,
ReplyDeleteWow...you went through a lot!!! I am glad to hear you are doing much better. What a whirlwind! My update is that I started taking .75 mg of cabergoline(pill and a half) two times a week. After two doses, my menses (if you want to call it that...it was barely there LOL) started. I was so excited.
Hopefully my prolactin is truely coming down. I will see if my menses returns next week and then I will go for bloodwork in about three weeks.
-Erin
Oh wow! There have been lots of comments on here and I have not been on here as much lately! Sorry :( Alex, I'm glad you are doing better :) I can't wait until I am at the point of maintenance because I think frankincense will be perfect for that....It will probably be after I am done having kids when that will happen though! Erin- Just sent you an email...hope you are doing better today not that you got to vent a bit!
ReplyDelete