Hi, all. I received an email recently from a researcher who is involved in a project regarding endometriosis and treatment options. I thought I would post their message here for anyone that would like to participate.
In other news, I finally feel as though the Lupron is out of my body in terms of my energy levels. I walk a mile a day. I did read some disturbing stats regarding neuropathy-like effects from Lupron and I am wondering if their is connection.
Message below:
Dear Reader, Neurocrine Biosciences (a San Diego biotechnology company) is conducting an endometriosis patient research survey as a part of our ongoing efforts to understand the disease of endometriosis and the needs of women suffering from its debilitating symptoms. The first 50 qualified participants will receive a $25 honoraria for participating. The survey should take approximately 30 minutes to complete. The information you provide will develop our understanding of the symptoms of endometriosis, the process leading to your diagnosis, and the available treatment options. At the same time, this information will guide decisions on the clinical development of an investigational drug having the potential to treat the symptoms of endometriosis. Your responses are completely confidential, and all results will be used at the aggregate level and only for research purposes. If you are interested in participating, please send an e-mail to endosurvey@neurocrine.com, and we will contact you directly to fill out a screener to determine your eligibility. We appreciate your willingness to share your experience and the important guidance you will provide to our efforts to develop a better treatment alternative. Kind Regards from Neurocrine Biosciences.
Thursday, September 25, 2008
Wednesday, June 4, 2008
May 27 and thereafter: Cycling off
SIDE EFFECTS FOR THESE DAYS: left groin pain (pain rating 5); side pain (2); tired; problems with mobility due to the groin pain; problem with finding a comfortable way to sleep because of the groin pain.
As far as I can tell, I have cycled off Lupron. In the past week, I have had no headaches, maybe one hot flash. Except for being tired and the familiar pain, I'm back to what life was before I started the shots. I'm thankful that cycling off has not been bad considering what so many others went through.
I wish everyone else well on their journey with Lupron. I know it has the capacity to help some people, though I was not one of them. I hope the chronology of my own treatment can serve as a benchmark, regardless of the success of your treatment.
That being said, if you are a classical singer, I would never recommend this treatment to you. You are at great risk of changing your voice and the downtime is severe. It was nearly impossible to perform and my entire voice shifted more than by fach and category. I'm still waiting to see what the long term effects are vocally. Again, I specify that this warning would be for classical singers. MT/Broadway, pop, etc use mikes and would not be as affected.
As far as I can tell, I have cycled off Lupron. In the past week, I have had no headaches, maybe one hot flash. Except for being tired and the familiar pain, I'm back to what life was before I started the shots. I'm thankful that cycling off has not been bad considering what so many others went through.
I wish everyone else well on their journey with Lupron. I know it has the capacity to help some people, though I was not one of them. I hope the chronology of my own treatment can serve as a benchmark, regardless of the success of your treatment.
That being said, if you are a classical singer, I would never recommend this treatment to you. You are at great risk of changing your voice and the downtime is severe. It was nearly impossible to perform and my entire voice shifted more than by fach and category. I'm still waiting to see what the long term effects are vocally. Again, I specify that this warning would be for classical singers. MT/Broadway, pop, etc use mikes and would not be as affected.
Monday, May 26, 2008
May 20 - May 26: Losing another one
SIDE EFFECTS FOR THESE DAYS: left groin pain (pain rating 5); lower back pain (4); side pain (2); variable headaches (2-7); swollen uterus; very tired; lack of focus; increased hot flashes/night sweats; problems with sleep.
My body wasn't too happy with going back on Lo Estrin yet, so I stopped it. My uterus began to swell (or my ovaries) like a tight ball. After a couple of days, it subsided after quitting Lo-Estrin. The headaches are no longer a daily occurrence, but I am not past them either; I got saddled with another migraine on Saturday night. Energy levels are better, but I still require 12 hours of sleep. Yet, each day I am finding I am able to do more things, even if I require significant rest after doing them.
I have spoken a little that I lost my mom many years ago. It was to leukemia. At the time, we had no clues as to why and were only left with the daunting task of surviving the grief once she was gone. Many of the questions were left unresolved until a few years ago. Her first cousin (ML) was diagnosed with the same form of leukemia. They were very close in age, were brought up as siblings a couple of doors down from one another for several years.
What we learned by the second diagnosis was that it was environmental. My mom and her cousin were exposed to something in their neighborhood that left their mitochondria irreversibly altered.
My body wasn't too happy with going back on Lo Estrin yet, so I stopped it. My uterus began to swell (or my ovaries) like a tight ball. After a couple of days, it subsided after quitting Lo-Estrin. The headaches are no longer a daily occurrence, but I am not past them either; I got saddled with another migraine on Saturday night. Energy levels are better, but I still require 12 hours of sleep. Yet, each day I am finding I am able to do more things, even if I require significant rest after doing them.
I have spoken a little that I lost my mom many years ago. It was to leukemia. At the time, we had no clues as to why and were only left with the daunting task of surviving the grief once she was gone. Many of the questions were left unresolved until a few years ago. Her first cousin (ML) was diagnosed with the same form of leukemia. They were very close in age, were brought up as siblings a couple of doors down from one another for several years.
What we learned by the second diagnosis was that it was environmental. My mom and her cousin were exposed to something in their neighborhood that left their mitochondria irreversibly altered.
We also learned that, though ML fought the disease 20 years later with newer and better drugs/techniques, nothing could be done for either of them. ML died Friday night, surviving leukemia for a shorter period than my Mom.
There are many points to be made here. As related to those that struggle with reproductive illnesses, we increasingly point the finger at Dioxin, a pesticide linked to all kinds of illnesses (reproductive and otherwise). Companies profit from this chemical at the expense of our health. Draw your own lessons from that one.
Strangely, I feel some resolution with my mom's death. As I explained to my younger sister who was too young to remember the entire odyssey with my mom's illness, against the odds, lack of contemporary medicine and studies, she lasted four years. ML lasted far fewer. With this type of leukemia, there was little that could be done for either of them.
As I think of both of these women, I consider their indelible mark on me. My mom's link is obvious. I am part of her. She raised me as best she could.
ML had an artist's heart and I have her to thank for exposing me to the arts. She had studied ballet and her love for the arts never died. When her artistic aspirations didn't work out, she volunteered for the ballet in her city for 20+ years. She didn't live close to where we grew up, but we visited. Each visit was full of the arts. I'll never forget the time she got me access to the stage before a show and I stood there under the lights looking out into an empty house. It's a memory that comes back to me each time I step out onto the stage. And I feel them both there: my mom who never knew the career I would have and her cousin that lit the spark.
Tuesday, May 20, 2008
May 19: The lesser of the evils
SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (2); headaches (2); very tired; lack of focus; increased hot flashes/night sweats; problems with sleep.
My energy levels are better though I find that I tire easily. I at least have bursts of energy in which I can get things done. Driving is much easier. Running a vacuum cleaner and other household chores are now possible. I don't know if I was turning a corner on the Lupron, if it is the Lo-Estrin, or if it the cycling off, but day-to-day things are getting better. I'm getting back to pre-Lupron state, which I never thought was a blessing before, but it sure looks like a better place to be now.
My throat is very swollen today and my voice hates me. Good thing there is no concert today! I'm trying to do as little phonating as possible. My larynx feels like a Mac truck in there.
The groin pain and lack of sleep is what it is: nothing new.
My energy levels are better though I find that I tire easily. I at least have bursts of energy in which I can get things done. Driving is much easier. Running a vacuum cleaner and other household chores are now possible. I don't know if I was turning a corner on the Lupron, if it is the Lo-Estrin, or if it the cycling off, but day-to-day things are getting better. I'm getting back to pre-Lupron state, which I never thought was a blessing before, but it sure looks like a better place to be now.
My throat is very swollen today and my voice hates me. Good thing there is no concert today! I'm trying to do as little phonating as possible. My larynx feels like a Mac truck in there.
The groin pain and lack of sleep is what it is: nothing new.
Monday, May 19, 2008
May 18: Lupron and HRT Reimbursement
SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (5); headaches (4); exhaustion; lack of focus; increased hot flashes/night sweats; problems with sleep.
The performance was fine though between the dress and the performance I went through 30 minutes of chaos in my lower register (chords not approximating). I don't know if it was the Fioricet that threw my voice off (the headaches started coming on so I had to take a half dose to keep it at bay) or what. Fioricet has caffeine, which is tough on the chords. After steaming, it worked itself out, thankfully.
I wanted to share a rebate for Lupron and HRT I found online. I saw this on someone else's blog and thought I would get the word out here as well. https://www.endofacts.com/register/rebate.aspx
This will be especially helpful for those of you who have to pay out-of-pocket. This drug is not cheap. I am hoping it can help cover my partial payment as well.
The performance was fine though between the dress and the performance I went through 30 minutes of chaos in my lower register (chords not approximating). I don't know if it was the Fioricet that threw my voice off (the headaches started coming on so I had to take a half dose to keep it at bay) or what. Fioricet has caffeine, which is tough on the chords. After steaming, it worked itself out, thankfully.
I wanted to share a rebate for Lupron and HRT I found online. I saw this on someone else's blog and thought I would get the word out here as well. https://www.endofacts.com/register/rebate.aspx
This will be especially helpful for those of you who have to pay out-of-pocket. This drug is not cheap. I am hoping it can help cover my partial payment as well.
Sunday, May 18, 2008
May 17: Bone tired
SIDE EFFECTS FOR THIS DAY: left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; increased hot flashes/night sweats; problems with sleep.
I had a rehearsal today and was so tired. All I wanted to do before and after was to sleep. The piece I am doing is physically taxing, but isn't especially long. It probably would not feel quite so taxing if I weren't so tired otherwise, though it does deal with the extremes in range.
I've noticed an increase in hot flashes, sometimes several an hour. When I am sleeping something else is waking me and then about 30-60 second the hot flash sets in. I know some women feel that the actually sweating wakes them. For me, it is whatever is happening prior... a bad dream, some other chemical trigger, that is doing the waking.
I started back on the Lo Estrin on Friday, so we will see how it all goes. Hoping for the best.
I had a rehearsal today and was so tired. All I wanted to do before and after was to sleep. The piece I am doing is physically taxing, but isn't especially long. It probably would not feel quite so taxing if I weren't so tired otherwise, though it does deal with the extremes in range.
I've noticed an increase in hot flashes, sometimes several an hour. When I am sleeping something else is waking me and then about 30-60 second the hot flash sets in. I know some women feel that the actually sweating wakes them. For me, it is whatever is happening prior... a bad dream, some other chemical trigger, that is doing the waking.
I started back on the Lo Estrin on Friday, so we will see how it all goes. Hoping for the best.
Saturday, May 17, 2008
May 16: Back in the saddle
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.
Today I cooked a four-course meal for the first time in months. I've missed cooking. It's something I enjoyed for years and this past year, cooking has been markedly absent. It was nice to have a little energy to stand and create.
I slept horribly again last night, with vivid nightmares, interrupted sleep, etc. Groin pain is worse at night, as it always has been. It's very difficult to find a comfortable position to sleep in.
My doc advised me to start my bcp again so I am back to the Lo-Estrin. Should be interesting to see what happens as my body takes time to process through the Lupron and the intake of the Lo-Estrin.
Today I cooked a four-course meal for the first time in months. I've missed cooking. It's something I enjoyed for years and this past year, cooking has been markedly absent. It was nice to have a little energy to stand and create.
I slept horribly again last night, with vivid nightmares, interrupted sleep, etc. Groin pain is worse at night, as it always has been. It's very difficult to find a comfortable position to sleep in.
My doc advised me to start my bcp again so I am back to the Lo-Estrin. Should be interesting to see what happens as my body takes time to process through the Lupron and the intake of the Lo-Estrin.
Thursday, May 15, 2008
May 15: Aging beyond my years
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.
I am so tired I am about to fall asleep this second. I cannot believe how exhausted I continue to be. That being said, I made it to the grocery store and actually carried about 25 lbs of groceries by myself. This is the first time in weeks and weeks I have been able to do that.
I watched myself on TV tonight and could not believe how much I have changed. I looked old, frail and emaciated - not in the anorexic sense but in a malnourished sense. I know they shot me early in the morning, but still... I looked awful.
Last night I barely slept. I woke at 4.30a and worked; I napped later. Now I find I can barely stay awake so perhaps I will sleep.
I am so tired I am about to fall asleep this second. I cannot believe how exhausted I continue to be. That being said, I made it to the grocery store and actually carried about 25 lbs of groceries by myself. This is the first time in weeks and weeks I have been able to do that.
I watched myself on TV tonight and could not believe how much I have changed. I looked old, frail and emaciated - not in the anorexic sense but in a malnourished sense. I know they shot me early in the morning, but still... I looked awful.
Last night I barely slept. I woke at 4.30a and worked; I napped later. Now I find I can barely stay awake so perhaps I will sleep.
Wednesday, May 14, 2008
May 14: Not out of the woods
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 5); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.
If yesterday taught me anything, it's that the side effects (whether it be estrogen loss or Lupron) can come back at any given time, regardless of the number of manageable days you have. Yesterday was a beast. The pain in my head was close to unbearable.
I woke up early and tired this morning, with a headache. I made it through the interview no problem. I was just exhausted. I had wanted to crash as soon as I got home, but it didn't happen. Hoping for sleep tonight.
If yesterday taught me anything, it's that the side effects (whether it be estrogen loss or Lupron) can come back at any given time, regardless of the number of manageable days you have. Yesterday was a beast. The pain in my head was close to unbearable.
I woke up early and tired this morning, with a headache. I made it through the interview no problem. I was just exhausted. I had wanted to crash as soon as I got home, but it didn't happen. Hoping for sleep tonight.
Tuesday, May 13, 2008
May 13: I know my pulse because I can feel it in my head
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 8); left groin pain (pain rating 6); lower back pain (4); side pain (5); exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.
I'll write more later but right now I have one of the worst migraines going on. And I have a rehearsal in two hours. Lovely.
=============
Tonight was a living hell for a couple of hours. My headache started in the morning and I was hoping it would go away. By the afternoon, it was excruciating. Any note I would try to sing left me reeling. This with a rehearsal looming large. The work that I am performing this weekend is very high and very loud. It takes a lot of strength and it is a bit of a work out. In desperation, I took a half dosage of the Fioricet. It cut the headache to manageable and I wasn't a complete space cadet, though a flubbed a couple of passages. I was very tired by the end.
Tomorrow I have to be up early for a TV interview. I just want to sleep.
I'll write more later but right now I have one of the worst migraines going on. And I have a rehearsal in two hours. Lovely.
=============
Tonight was a living hell for a couple of hours. My headache started in the morning and I was hoping it would go away. By the afternoon, it was excruciating. Any note I would try to sing left me reeling. This with a rehearsal looming large. The work that I am performing this weekend is very high and very loud. It takes a lot of strength and it is a bit of a work out. In desperation, I took a half dosage of the Fioricet. It cut the headache to manageable and I wasn't a complete space cadet, though a flubbed a couple of passages. I was very tired by the end.
Tomorrow I have to be up early for a TV interview. I just want to sleep.
Monday, May 12, 2008
May 12: Where is my brain?
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 6); lower back pain (4); side pain (5); fleeting, needle-like pain in shins; exhaustion; lack of focus; hot flashes/night sweats; problems with sleep.
I am very forgetful today. For two hours, I could not think of my nephew's name. Today was early-ish day in any case and I am generally fuzzy/tired on those days, but this was worse. And I am having a hard time finding a position to sleep in comfortably again.
Wednesday would be my third shot. But I am not going down that road any more. Now I'll be writing about cycling off, which i hope won't be quite so bad.
I am very forgetful today. For two hours, I could not think of my nephew's name. Today was early-ish day in any case and I am generally fuzzy/tired on those days, but this was worse. And I am having a hard time finding a position to sleep in comfortably again.
Wednesday would be my third shot. But I am not going down that road any more. Now I'll be writing about cycling off, which i hope won't be quite so bad.
May 11: Tired
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 3); left groin pain (pain rating 6); lower back pain (4); fleeting needle-like pain in shoulder/neck; exhaustion; lack of focus; hot flashes/night sweats; problems with sleep; nightmares.
I was so tired. I had to wake up early for a Sunday appointment an hour away. The appointment was draining so I would imagine much of my exhaustion was from that. I was so drained that I had no appetite afterwards, no energy, no focus and went back to sleep as soon as I could.
I also went to bed, again, early in the evening.
I was so tired. I had to wake up early for a Sunday appointment an hour away. The appointment was draining so I would imagine much of my exhaustion was from that. I was so drained that I had no appetite afterwards, no energy, no focus and went back to sleep as soon as I could.
I also went to bed, again, early in the evening.
Sunday, May 11, 2008
May 10: Old Faithful
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 5); ovarian pain (4); lower back pain (4); leg pain (3); pain on left side (2); hot flashes/night sweats; problems with sleep; nightmares.
I practiced today. I'm about a week out from a regional premiere and realized how far behind I am. But my voice, if it holds, will be fine. It's in a good place right now for this work.
I slept for a long time last night, but was interrupted by half a dozen nightmares. These dreams seem so vivid and true. Some of them in recent days are about people I haven't thought about in years and others involve my current cast of characters. All the nightmares involve my worst fears... I guess all nightmares do. They are just so incredibly vivid. Though I have always remembered my dreams, these seem so real that when I wake I can barely separate them from reality. Strange.
I did not get to walk today, but I managed to carry some things to the car and the dumpster. I did some housework.
I think this week has been better, all in all, but I keep going back to the same question. Did the Lupron help what it was originally supposed to help? The answer is no. It's my understanding that I would have seen improvement by now, yet even as I type, I feel the familiar knife-like pain in my groin.
I practiced today. I'm about a week out from a regional premiere and realized how far behind I am. But my voice, if it holds, will be fine. It's in a good place right now for this work.
I slept for a long time last night, but was interrupted by half a dozen nightmares. These dreams seem so vivid and true. Some of them in recent days are about people I haven't thought about in years and others involve my current cast of characters. All the nightmares involve my worst fears... I guess all nightmares do. They are just so incredibly vivid. Though I have always remembered my dreams, these seem so real that when I wake I can barely separate them from reality. Strange.
I did not get to walk today, but I managed to carry some things to the car and the dumpster. I did some housework.
I think this week has been better, all in all, but I keep going back to the same question. Did the Lupron help what it was originally supposed to help? The answer is no. It's my understanding that I would have seen improvement by now, yet even as I type, I feel the familiar knife-like pain in my groin.
Friday, May 9, 2008
May 9: Functional and Pensive
SIDE EFFECTS FOR THIS DAY: headaches (pain rating 1); left groin pain (pain rating 4); ovarian pain (4); lower back pain (4); leg pain (3); pain on right side (2); lower ab muscles weak; hot flashes/night sweats; problems with sleep.
I drove today. In a major city. And got very lost.
None of that I can attribute to estrogen loss. Rather, I blame Google Maps.
But I was able to carry on a nice conversation for two hours and made it back home. Tonight I was able to walk 4 blocks to a favorite restaurant. The walk back was easier... after drinking a lot of wine. :-)
I'm very tired though.
I received a nice mention in the daily paper regarding the Yom HaShoah service I did last week, which was completely unexpected. Very sweet.
Turn that 180 degrees and I find myself regarding some paths that I feel like are coming to an end. There's some sadness, regrets ...wondering what's next.
Beyond a full night's sleep, I'm not sure.
I drove today. In a major city. And got very lost.
None of that I can attribute to estrogen loss. Rather, I blame Google Maps.
But I was able to carry on a nice conversation for two hours and made it back home. Tonight I was able to walk 4 blocks to a favorite restaurant. The walk back was easier... after drinking a lot of wine. :-)
I'm very tired though.
I received a nice mention in the daily paper regarding the Yom HaShoah service I did last week, which was completely unexpected. Very sweet.
Turn that 180 degrees and I find myself regarding some paths that I feel like are coming to an end. There's some sadness, regrets ...wondering what's next.
Beyond a full night's sleep, I'm not sure.
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