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Post by 1234 on Aug 3, 2012 10:31:54 GMT -5
Yes, I'm very glad you're talking to Dr. Redwine first. I worry about this drug!
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Post by candicelynn on Aug 20, 2012 3:02:18 GMT -5
Have you looked more into this? I also got invited to do this and I've been doing some research and I don't know if I want to proceed. I would be interested in knowing if you found out more information!
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Post by 1234 on Aug 21, 2012 9:42:06 GMT -5
THe funny thing is, after Jess posted about this, I saw advertisements for it popping up in my browsers. The internet advertising algorithm is FAST.
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Post by jessabug on Aug 22, 2012 15:57:12 GMT -5
Lol, that's funny Kristin! I kind of bailed on this whole study thing... you guys talked enough sense into me and my family didn't really want me doing it either, and every time the lady contacted me I magically seemed to forget to get back to her.. which I think was my subconscious telling me that it didn't want to play that game. Lol.
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Post by 1234 on Aug 22, 2012 20:33:59 GMT -5
I have to admit I am very relieved about that, Jess. I hope that you can find a study soon that suits your smarts and your commitment, and your physical needs.
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Post by JC on Aug 23, 2012 6:30:53 GMT -5
Ill admit, I'm pretty relieved too. I think it's amazing that you are willing to help others with this research but I was worried over your health!
The fact that it works like Lupron worried me but I can at least appreciate the fact that it was in pill form so if it doesn't work out then there is the option to just stop taking it. Lupron shots are something you're just stuck with until our body processes it all.
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Post by cortney on Oct 16, 2012 16:08:18 GMT -5
I just signed up for the Violet Petal study! I thought about it long and hard and decided that since I'm still having horrible pain after my Lap, I need to take something. Hormone therapy has always made me super crazy, so I wanted to avoid that. Lupron sounded super scary because it's a shot, and I wouldn't be able to just go off it if the side effects were too much. The study will be done at the best new Women's Health Center in my area, and the RN in charge told me that she could get me in with one of the doctors as a new patient. That's super exciting because there is a very long waiting list to get in, and I really need a new doctor. I have been told several times that I can exit the study whenever I want. The RN was very nice and smart and took the time to answer all my questions and put me at ease. While I'm not looking forward to the monthly invasive tests, it will be interesting to be monitored so closely. I will be getting tests done that a typical patient normally wouldn't, and I will be getting copies of all the results.
I plan on writing all about my experiences with the study here, so if anybody has any questions please feel free to ask!
-Cortney
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Post by loveshoes on Oct 16, 2012 19:15:34 GMT -5
Everyone is different but I can understand when people have tried everything out there and nothing has worked that when you have no other options and feel like you have nothing to loose that anything is an option. I hope you have success and looking forward to hearing how things go as you are being treated!
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Post by cortney on Dec 11, 2012 21:21:42 GMT -5
Violet Petal Study update:
After finishing the "washout period" I am now two cycles away from getting the trial drug. My appointment today was the most invasive so far on the study. I was weighed, had blood pressure taken, gave 7 vials of blood, had a breast exam, and had a pap and endometrial tissue biopsy taken. I happened to be on the perfect day of my cycle for this test because I was ovulating and did not need my cervix to be chemically dilated. That saved me a lot of pain and cramping I'm sure. I am in quite a bit of pain now, but that is to be expected after a test like that.
I was told that I will not be allowed to take my Tylenol 3 while on the study. My two drug choices are naproxin and Vicodin. The nurse expressed frustration with this fact, and told me that trial participants in Canada will be allowed T3 for some reason. (I'm in the U.S.) She also said that they are having trouble finding participants because it's such a time consuming and invasive trial, and because some interested patients just don't have bad enough pain to qualify.
At the end of my exam, I was given a smart phone type device to record my pain levels on. There is a simple questionnaire that asks about the meds I've taken each day, issues with intercourse and daily activity, and a few other things that I'm forgetting. My daily log will be sent to the nurse I'm working with, and to the test makers themselves. It's pretty neat, and I think will be good for me to keep track like that for myself.
I was also given a preloaded debit card which is where my payment for being on the study will go. There's already about 200 bucks on there from the two other appointments I've already had. It's a nice little incentive to keep on the study. If I stay through the entire thing, I believe I will have something like 1,200 saved up! I plan on using that money to take my son for a florida vacation in the spring.
I made two more appointments before leaving the office. Next week I will get a bone density test. This is another perk of the study. It's a non invasive test that will give me a baseline of bone health to see if the trial drug contributes to bone loss. This is important information to me because osteoporosis runs in my family. It's the kind of test that a healthy young women wouldn't normally get, so it is highly beneficial for me to be getting it for future reference. And it's FREE!
Also after the first of the year I have a transvaginal ultrasound scheduled. This is the dreaded test where they pretty much f**k you with a wand forever. It's painful and scary and just something that I have to endure to be part of this trial. I believe I have to get one once a month, or every two months. Thankfully my awesome husband has agreed to go in with me and hold my hand and take care of me for the rest of the day afterwords.
That's all the news I have to share. I'm still really excited about it. I really hope that I get the actual drug and not the placebo (which I have a 3 in 7 chance of getting) as I'm in a ton of pain since my lap. Wish me good luck!
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Post by cortney on Dec 18, 2012 20:21:13 GMT -5
I had my bone density test today for the Violet Petal study. It was performed at an orthopedics office in Grand Rapids. I had to lay on a padded table (completely clothed! they didn't even have me take my shoes or jacket off!) with a scanner type thing over me. The technician velcroed my left foot to a brace to stabilize my leg into the correct position. She scanned my hip which took about a minute then she had me unzip my jeans and lift my jacket up a little so there was no metal in the shot for a lower spine scan. That took another minute, then I was done! I got to see the images on her computer screen, but she couldn't give me any information on what anything meant. The doctor will take a look at them and I will get some kind of result at my next meeting with the study nurse.
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jenya
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Post by jenya on Jan 24, 2013 16:29:49 GMT -5
Thank you for sharing Cortney, please keep us updated. I'm following.
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Post by cortney on Jan 26, 2013 12:02:59 GMT -5
Since I last wrote I've had my transvaginal ultrasound and a second bone density test. I had to have another bone scan because there was some error with how the original scan was recorded or something.
The transvaginal ultrasound wasn't nearly as bad as I had anticipated. They had me do it a couple days after my period ended, which is usually a pretty cramp free week for me, so once again, I'm assuming the lack of pain involved had something to do with where I was in my cycle. The ultrasound was performed by a very kind woman who I could tell had some training in making people comfortable and reading cues. She had me undress from the waist down, allowing me to leave my socks on. Then I got onto the exam table with feet in stirrups. She showed me the ultrasound wand, and explained that most if it was handle (because it looked super long). It was about the width of a large tampon and she had placed a condom over it with some lube. She asked if I would like to insert it, or should she do it, and I allowed her to do it.
She told me a couple times that if at any time I want to stop, we'll stop. Just knowing that I was in control put me at ease and helped me relax. She didn't talk much during the exam, which is good because I find that aggravating when I'm nervous. The wand was moved around by basically keeping it at the same place at the opening of my vagina, and tilting it back and forth or up and down inside. She would move it to one side inside me and take a few photos then slowly move it to another spot. Thankfully she saved my right ovary for last because that's when it started hurting a little. I have most of my endo pain there, and when I had my Lap done a few months before the surgeon explained that she had chased it around with the lazar because it flops around inside there. So instead of inserting another instrument to hold it steady while she incised the Endo from it, she just burned the hell out of it and called it a day.
Anyway, the technician spent quite a lot of time taking pictures around that right ovary. After the exam was done and I was dressed, I asked her what she saw around the right side. She said that she saw a lot of fluid which would indicate that I had just ovulated. Not possible since I was still pink from my period. I asked her if the fluid could have been blood pooling from the endo bleeding out during my period and she said she couldn't answer that because she's just a technician. I suspect that's what it was though. And if so, that means that the f**king surgeon didn't only scar up my ovary to hell, she left plenty of endo on there. Thanks a lot.
I bled quite a bit for the rest of the day and had some decent cramping. Enough to force me to take it easy and take a Vicodin. The cramping from the exam was completely gone two days later. So I won't be afraid when I have to do this procedure again, but I will make all the necessary arraignments so I can relax for a few days after.
I just got an email from the Violet Petal study nurse asking if I can come in this monday to get the drug! I'm very excited. I'm just sick of this pain and I really hope I get the drug and not the placebo and that it works with few side effects. I will continue to write about my experiences! Thanks for reading.
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Post by cortney on Jan 28, 2013 17:23:20 GMT -5
I got the drug! (or a placebo) I'm officially a Violet Petal girl.
In my appointment today I had an EKG, about 10 vials of blood taken, urine sample, and pelvic and breast exams. I also did a verbal questionnaire which was really depressing because she asked stuff like "how often do you feel alone because of your Endo symptoms." I almost started crying because the effects of this disease were totally laid out in front of me.
The nurse "randomized" me in the computer and fetched the box of pills that the computer said to give me. I got a 5 week box. Each week is a weirdly designed blister pack. And it's huge. Each one is about the size of an iPad only a little longer. So no slipping it in my pocket or purse if I'm on the go. There is a sensor inside the pack that records what day and time I take out my pills, so I can't take them out and fill my little medicine compact either.
I take three pills in the morning at 11:00 (I got to choose the time) and two at 11:00 in the evening. They have to be taken on an empty stomach so no food two hours before the dose or for one hour after. That might be a challenge but I'll figure it out.
I was given my first dose at the clinic and she tested my blood after waiting an hour. I didn't feel anything, which is good because with hormonal treatments I'm often feeling crazy within the first few hours. Now five hours later I still feel no different. So either I got the placebo, or the pill is more gentle than oral contraceptives.
I will keep writing as side effects come around or not. I'll have another appointment in a month. Please message me with any questions!
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jenya
New Member
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Post by jenya on Jan 28, 2013 23:14:23 GMT -5
Thank you for all the details. Hopefully you got the medicine, and it will help the pain go away.
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Post by cortney on Feb 4, 2013 16:43:57 GMT -5
Thanks for the kind words everybody!
I'm a week into taking the drug now. So far so good! I'm having mild symptoms which means that I probably got the real deal. That is unless I'm having some new weird Endo symptoms which is entirely possible.
My symptoms are light bleeding, mild headache, and my cramps are about 20% worse than normal.
I do normally spot this time in my cycle (ovulating) but this spotting has been constant for the past 4 days and is quite a bit heavier than normal spotting. I normally don't have to wear a pad, but I've had to change my pad at least twice a day.
I only mention the mild headache because I don't get headaches at all anymore and it was weird to get one. Headaches are one of the reported side effects of this drug.
Cramping has been pretty bad. I've heard that people on Lupron have bad cramping in the first week or two, so maybe it will get better. That's the whole point of this drug anyway, so I sure hope so!
Ok, I'll write more next week or if anything new pops up. Thanks for reading!
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