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04/12/2004
I don't even have to inject Lupron for it to make me crazy
A quick review:
10 units of Lupron decreased to 5
2 amps Repronex / 2 amps Follistim
4 eggs retrieved, 1 fertilized
IVF #2:
5 units of Lupron decreased to 2.5
2 amps Repronex / 2 amps Follistim
Dominant follicle; retrieval cancelled
IVF #3:
10 units of Lupron decreased to 5
2 amps Repronex / 2 amps Bravelle
9 eggs retrieved, 2 fertilized
For IVF #4, I am told I will be on:
4 amps Follistim
I'm concerned about the whopping dose of Lupron. My ovaries don't respond with enthusiasm even on half that — how much more intimidated will they be this time? How can I trust my ovaries to snap to attention after being so thoroughly stomped into submission? If we were increasing the gonadotropins I might feel more at ease, but it's the same dose I've been on every cycle.
I told myself I wouldn't second-guess anything this cycle. I'm in good hands, I know, and I'm paying other people, educated people, real live doctors, an awful lot of money to do the thinking.
But I also know I can't expect the kind of individualized attention I've had in the past. My new clinic is a busy place, overseeing hundreds of cycles a year — busy enough that I fear I'll fall through the cracks, that decisions about my care might be made without considering the context of my past response.
It's a busy enough place that I know I'll need to forego the kind of hand-holding I've relied on in the past. It's early for me to start decompensating; I haven't even started Lupron yet. I know there's a perfectly good explanation for the increased dosage, one so obvious and well-reasoned that I'll feel stupid for even asking.
Even so, I think a talk-me-down-from-the-ledge phone call is in order.
Posted by Julie at 01:51 PM in Notes from astride the stirrups | Permalink
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Comments (36)
Um, would the reason be that the extra Lupron means extra hormones, which is a great defence for murder, for next time some fecking eejit asks why you don't just adopt? Or relax? Or put a pillow under your hips after sex? - oops I mean after "babydancing".
Posted by: Tess T at Apr 12, 2004 2:08:30 PM
I have a few thoughts. You are going to Cornell, right? I am actually planning on going there in AUG/SEPT for an IVF cycle, too. I decided to go because I've had several patients who have had multiple failed IVF's get pregnant at Cornell. Also, since they get so many "failed" patients, I gotta believe their stats really mean something (as opposed to clinics that take only 25 year olds). Anyway, I have heard that at Cornell , they are determined to stimulate for quality not quantity. That may be why they are trying to stimulate you so slowly. That is actually why I want to go there. I do believe a more gentle stimulation produces better eggs and so better embryos and thus more viable pregnancies. Remember , all you need ... well you know the rest. By the way , what do you think of the doctors there? Who do you like best? Do they do more monitoring as I've heard?
One more thing, I was quiet through the whole Heidi thing, but I do have two things to say to her:
1. Do non-Christians like me deserve children or not? (That's not rhetorical...please, please answer me)
2. Religion as an entity has been so good to the world lately, I do understand why you may think it will save us and our unborn children (Please, please take that sarcastically).
Posted by: maria_ob at Apr 12, 2004 2:21:57 PM
Julie - I'm really surprised by the protocol they've chosen, as you must have been. Has anyone ever considered the possibility of doing a NO supression cycle with you?
Posted by: Liz at Apr 12, 2004 2:22:43 PM
Ah! Yes - Maria's comments above make total sense.
Posted by: Liz at Apr 12, 2004 2:29:36 PM
I also agree with Maria, I go to the Sher Institute, they also believe in quality over quantity. Maybe they are trying to stimilute you slowly.
I would ask the doctor about switching stims, like Gonal-F instead of Repronex. Maybe you will respond better?
Posted by: Jodi at Apr 12, 2004 2:30:54 PM
Hey Julie--I haven't done my first IVF at Cornell yet, but I did ask my doctor (who is maybe also your doctor) about whether he would be part of my protocol since I haven't been stimming up a storm for my IUIs. He said he pretty much always uses it for "better control," but I vote for calling. Cornell is a big place, and sometime's it's just nice to hear a human voice. Good luck!
Posted by: Lisa at Apr 12, 2004 2:34:28 PM
Ahhh, I thought you had said you were going to Cornell. I'm going there too. (Maybe we can all hang in the waiting room sometime? ;)) They had me on 20 cc's of Lupron, too. Now I'm on no lupron, but a month's worth of bcp's.
I'm constantly worried about my protocols and second guessing the doctors. I think it would be good to call and consult with your doc. My doc is pretty hard to reach, so I have only seen him a few times and I've cycled there four times already.
Posted by: Karen at Apr 12, 2004 3:19:20 PM
answer to maria: kind, loving people who have the wit to care for children, deserve children. full stop.
not to say that people necessarily get what they deserve (or vice versa)--but we've been dancing that dance a lot lately!
Posted by: jilbur at Apr 12, 2004 4:01:19 PM
Well they are giving you more gonadotropins. You're taking 4 Follisting instead of 2 Repronex (half gonadotropins, half LH), 2 follistim, right? My thinking is that they're cutting out the LH factor, and giving you 25% more stim factor. So, in turn, they're looking at your past cycle where you had a dominant follicle, and are trying to stop that by increasing Lupron, which is suppose to even out growth.
(I'm gonna be a mess this time too.. instead of all gonadotropins, I'm getting Repronex 2, Follistim 2). Oy.
Posted by: BrendaS at Apr 12, 2004 4:48:17 PM
I will admit, I haven't done any IVF cycles (yet), so I am no expert,but I think what Maria said makes a lot of sense. Wouldn't it be nice to have the 'real live doctors' do all of the worrying too along with the thinking??? Now THAT would be something.
Posted by: Tiffanni at Apr 12, 2004 11:04:38 PM
SONOFABITCH! Thats a LOT of Lupron. Although I agree with Maria, but She's the doc and I'm not. (Although my dr's keep telling me I've missed my calling and should be one.)I personally think that your LH DOES need to be suppressed, since you ovulated early last time, if Im not mistaken. I'm only saying that because that's what I have to do, since they are worried about me doing it also. Maybe Maria can jump in here, but I DO wonder if our individual bodies react differently to different versions of basically "the same recomb FSH"? I mean, I had better and more "ripe" eggs on Puregon my first try, vs. my 2nd and 3rd on Gonal-f (which I had to stim longer than the Puregon also). Gonal -f is a fraction of the price tho. My embryos were better with the Gonal-f tho. I guess its give and take.
I too have the awful habit of trying to second-guess my doctor. Sometimes I am also afraid I'm falling through the cracks, that I'm just another number, even though my IVF Specialist always tells me "Don't worry, we are friends now and I will take good care of you". Fine and dandy.....friend...... then why you hiding from me since failed IVF#3??? Is this paranoia? Maybe. But damn, these treatments aren't exactly wallet-friendly.
Julie, with all my heart I pray to God that this cycle works for you and that you can finally have your own darling baby to hold in your arms. You can do it. We are all rooting for you. Cornell has to be the answer.
Forgive me. I'm rambling.
Posted by: Cyn at Apr 13, 2004 1:51:47 AM
Dear Julie, I think you're fabulously talented and so generous for sharing your story. I'm delurking after reading your blog for months. I am often moved by your honesty, your spirit and your writing here and on IVF-C. I cried when your cat died. Last week, I checked your site everyday, even though I knew you'd be gone. Anyway, count me in as one more fan who wishes you every success and happiness.
I'm also traveling out of state to do my first ivf at Cornell (first two weeks in May) and I went around it with my RE there, who is an ever- so-patient man. I also didn't want to be a pain in the ass, so I settled for being obsessive/compulsive and emailed him 3 times, called him twice. He wanted to start me out on the no bcps/antagon protocol, the same one that had gotten me two embryos with the same amount of stims and a bfn at my last clinic. Since I had a big dominant follicle, I wanted to try bcps and microdose lupron. I didn't want him to think I was second-guessing him, but I did want a rationale based on what he thought was best for me given my experience. Finally, given my dominatrix follicle, he said we could try microdose lupron with bcps, gonal-f and repronex, but I think he thought it was 6 of one, half a dozen... Yet, I feel better, for now. Talk to me in June. So, I hope you keep calling your RE till you get an answer that satisfies you. It's not like they're doing this for free.
Also, Julie, if I see you in the waiting room at Cornell, or in the laundry room at the HM Tower, would it be too intrusive if I came over and said hello?
Posted by: Pebbles at Apr 13, 2004 3:25:21 AM
I won't get into the discussion about the protocol because I am totally ignorant on that score. What I do want to say is that it is never wrong to ask a healthcare provider questions about a drug or treatment they prescribe. From my view, as a registered nurse, if you don't know why a doctor wants to do something, you better ask! Good luck with the IVF.
Posted by: Barbara at Apr 13, 2004 11:59:02 AM
Maria, thanks for your thoughts. While I've heard that a slower stim can make for better egg quality, I'm concerned. I tend to stim slowly anyway — I've never triggered before day 12 of stims. I'm worried that the extra suppression will cause an even s-l-o-w-e-r, less exuberant response than I've already had.
I'm glad you have a plan for your next attempt. I've only met one of the doctors there, but I liked him quite a lot (possibly because I need to). I'm relying on my single impression of him and extrapolating from there. And from word of mouth, and from their statistics, which are inspiring, since they include, as you mention, even the tough cases.
They certainly do more monitoring than my local clinic, where I was seen every other day throughout the cycle. Of course it costs a lot more...but I'm worth it. (Imagine me saying that through a shimmering curtain of exquisitely colored hair, instead of the ratty mop I'm currently sporting.)
Posted by: Julie at Apr 13, 2004 12:15:37 PM
Hey, Brenda, a good thought, but I don't think it's quite correct — Repronex and Follistim both contain the same amount of gonadotropin (75 iu per vial). Repronex has an additional 75 iu of LH, but switching to an all-FSH protocol isn't going to result in an overall increase in stims, I don't think.
This is going to be my first IVF cycle without LH. I'm hoping it makes a big difference in egg quality. Are your doctors adding LH with the same hope? And when do you start?
Posted by: Julie at Apr 13, 2004 12:21:12 PM
Pebbles, I love that: "It's not like they're doing this for free!" Very true. I will call. Just the prod I needed.
Posted by: Julie at Apr 13, 2004 12:23:34 PM
You may not like what I'm about to say but I think the dirty little secret is that there is little rhyme or reason for how IVF cycles are planned. So don't try to look for any. It's more like: "If that doesn't work , let's try this. If this doesn't work , let's try that". So even though this is my field of work, I too don't understand their logic for doing this or that, perchance because there is no logic to it afterall. It's very frustrating. As my RE said (and I still hate him for it): "It's better to be lucky than good." Well thanx for the philosophical chit-chat, but I since I haven't been "lucky", I am paying you my hard-earned money to be "good"... So go to it...
Posted by: maria_ob at Apr 13, 2004 12:45:05 PM
Julie, You're probably right about no extra stims. The way my RE explained the Repronex/Gonal-f didn't make that much sense to me, but he said that sometimes LH can stop the egg from growing so quickly, and even out the growth all around. Ah well.. I trust the guy.. he was at Cornell before he moved to Brigham... and he looks like Adam Sandler, so he can't be all that bad. LOL
This will be my first cycle WITH LH! We had soooo much fragmentation with the last IVF, they're hoping the added LH will take care of that. The cell count was perfect on all our embryos, and we transferred back a 10C and a 8B. It's the fragmentation that made the other 6 arrest.
I start lupron on the 20th (CD16), and stop the BCP on the 26th. Should get AF on the 1st.. start stims CD2. We'll be doing 2 repronex, 2 follistim. Have no experience with either, only gonal-f. This should be interesting.
Posted by: BrendaS at Apr 13, 2004 12:55:21 PM
Hi Julie. I'm completely clueless when it comes to this stuff, so all I'm gonna say is GOOD LUCK TO YOU AND YOUR OVARIES! :o)
Posted by: Carrie Jo at Apr 13, 2004 6:02:12 PM
Julie, I only just discovered your site and I wanted to wish you success for this cycle.
You're an amazing writer. Your language (foul or otherwise!) is beautiful even when you're describing experiences that are anything but.
I hope that you'll soon be using it to write about much happier things.
Posted by: Christine at Apr 13, 2004 7:03:57 PM
Ah....thank you Maria...my worst paranoid delusions are NOT paranoid delusions, but are in fact...FACT! I figured the fuckers just guessed. But if you're in the same boat as me, well then, I don't feel so bad, it being your line of work and all. I like you. You're COOL. (I bet you wouldn't tell some poor 15-year-old cow (erm, ME way back when)you'd just diagnosed with PCOS that "Don't worry, you will be as fertile as the Nappa Valley".) Gee, looks like there's a drought in Nappa, don't it? Sigh. Maria's a rockin Doc.
Posted by: Cyn at Apr 14, 2004 1:04:32 AM
Oh, and Julie, thank you for lighting the match under my ass. I'm psyching myself out to start up again and you help a lot. Really. All this talk about stims and LH and FSH and blah blah blah....its a good thing.
PS: come to think of it, my embryo quality was much better with my LH being suppressed.
Posted by: Cyn at Apr 14, 2004 1:10:55 AM
Congrats from another Cornell Grad. I did 10 IUIs and 5 IVFs and 2 m/c to get pregnant with my twins (really, surviving triplets). I failed 3 IVFs locally, and did 2 at Cornell. I was almost 41 when I delivered the twins, after 173 days in bed (apparently my body was no happier being pregnant than it was getting pregnant). And we are still paying off the debt.
And I would do it all again in a heartbeat to have my 3 year old twins. They are the lights of our lives.
Wishing you a boring 6 more months. ((I wish EVERYONE a boring pregnancy, its the best kind to have --- totally normal and uneventful ;-)
Marilyn
Posted by: marilyn at Aug 27, 2004 10:46:37 AM
Hi, I am new to IVF --just did it once, was unsucessful...have to do PGD too...that's the real issue I guess. It's quality.
Last time did BCP 3 weeks, Lupron, Follistim, Repronex, HCG(trigger) Progesterone...got 5 follies, 4 embies, and only one healthy--transfered but she didn't implant. You all seem to know what you are doing....
Doc says no Lupron this time? Do you know why? He wants to make more embies, to try to get at least two high quality...to transfer back. He says Follistim and Repronex...anyone do this?
Posted by: audra at Mar 12, 2005 10:18:18 PM
Hi, Audra. Off the top of my head, it sounds like your doctor thinks you may have been oversuppressed last cycle, with the Lupron keeping your ovaries from making as many eggs as they might have. Is he having you do Antagon or Cetrotide instead to prevent ovulation?
Good luck to you — I'm sorry about your negative, and I hope this cycle is it for you.
Posted by: Julie at Mar 13, 2005 7:59:48 AM
I wish everyone the best. I too taking Lupron @10 units now I'm on my period. I start on Wednesday the Gonal F @225, Lupron drops to 5 units and hcg @ 10 units. Wednesday will be my first us and bloodwork. Oh and my first IVF. But anyway I do wish everyone that is going through this w/ partner or w/out one.
Just pray man.....
Posted by: Michelle at Jun 5, 2005 8:23:36 PM
I am not experienced ivf type of woman, but, I wanted to share just because I sense nobody else (even your partner/husband, who says he loves you) has a clue of what we go throught with these treatments. After I started my treatment last year, I realised I was pregnant naturally (I am 39yrs old!) and being pregnant while taking Lupron was not the best thing! I had a dangerous ectopic and was the worse thing i ever tried. Now, not only b/c of my age but because of my bigger chances of another ectopic, I am experiencing ivf cycle, on an antagonist protocol... after tomorrow will be the us nd bloodwork..i am trying to be less mental and use my heart for tranquility and my soul for faith. I have to learn how to relax and rely, for a change!!
Posted by: monica okuno at Aug 1, 2006 10:26:20 PM
i just want to say i'm in awe of all of you for taking all these meds (repronex, lupron, etc.) and going through all those cycles! i have just started repronex (day 3) and am already feeling crappy and sick and in pain from the shots. i am not an ivf candidate (they are going for an iui thing) and can't even imagine taking more drugs!
Posted by: cece at Oct 5, 2006 6:16:11 PM
Hello everyone....my name is Susan and im new to the site buttt i just went through my first full cycle of IVF and after taking a pregnancy test today....guess what im not pregnant...I dont even know what to think....and to top it all off i thought we had a male factor not a female factor so im so confused.....i dont know if i could go through another cycle....it so emotionally draining....ladies did it work for you at cornell???
Posted by: Susan at Nov 13, 2006 5:54:20 PM
wow! August 1 my comment was published! Today is March 8,2007 and here I am, mother of a beautiful preemie!! My precious baby boy was born at 24 weeks and his twin brother did not made it.. From all my ivf experience (including CVS and reduction) I can say that its a tough process, but it does work at the end. Be cautious and prepared for a roller coaster though; it can be really drains you out. Specially reduction! Oh, important to say, I transfered 3 embryos and I had 4 implanted! Be aware of this possibility when you transfer embryos...
Keep the faith.
Posted by: Monica Okuno at Mar 8, 2007 2:23:02 PM
I just had my second IVF cycle. 4 transferred. Cycle counts 7 8 9 10. Does anyone have any experience with these cell counts. A positive reply?
Posted by: connie feeney at Oct 15, 2007 3:31:24 PM
Hello,
I read all of the postings above and would like to put in my two sense. I am a health care professional myself. I see and have seen all kinds of things. I wanted to mention some of the things that I think about.
I am just a random somebody but I believe you have to look at the entire picture not just the meds... It seems (I could be wrong) that everyone is so focused on the medications of the cycles. I don't see any ages or the reasons why people are doing the cycles in the first place and I really want to emphasize that all of these things factor into the equation. I also think if this information was provided people could find other people that have similar situations. Even more similar than just doing IVF cycles...Every person is going to respond to the meds differently. Any kind of meds. It is all soooooo trial and error. It is true that they start each person on a cycle and if it works it was the right one, if it doesn't work they will change it to find the right "Potion" for you.
How much are you stressing about the cycles (A lot I'm sure that is why you should do something about it). I think one should really focus on trying to go to some yoga classes or try meditating to really take the focus off the cycle. Get a life, so to speak, and I am not trying to be mean here...it is amazing how a boyfriend or an IVF cycle can just take your world over and you forget about everything else in your life...find things to do, keep your mind occupied BECAUSE, there is research that shows stressing = no implantation. FYI, I of all people hate to sit still but am finding yoga and meditation to be very beneficial. I also would think as much as everyone wants to have a baby that adding something positive like this to your life can only help you...
My other question to you all is what did you all do after you transfers...bedrest? No bedrest??? Number of days of bedrest??? Are you over weight? Are you under weight?
I am asking these things because maybe one other thing could make the world of difference in your cycles...also assisted hatching or not??? Three day transfers or five day transfers???
I read a very interesting posting Q&A with MD. "transcrit from 3 day vs blastocyst transfer"...The MD refers to how some places will sometimes do three day transfers knowing that the eggs most likely won't make it till the 5 day (blastocyst stage) but if they do it at three days the blame is put back on the patient and the MD and clinic is off the hook and they can keep taking your money...It was an interesting posting...I am just informing you of it and not saying I agree or disagree. I also read about if they don't make it to five days out they are less likely to make it to day five or further inside. Please know I am only sharing what I have read, I am not saying I am correct I just think these things are important to be aware of and are good questions to be asking your RE and if you ask and get a wishy washy answer then I would question that MD. There is too much at stake not to be skeptical at times. Also, some people are candidates for some of these procedures and some aren't and I do realize this as well.
(http://www.sharedjourney.com/articles/3vs5.html) It is kind of long but a very interesting back and fourth between pt and MD.
The last and most important thing You HAVE TO BE your own advocate and always insist on answers and ask questions. I feel like I am bothering them at times but screw that shit...when you pay as much money as you pay they need to provide you with the utmost of care and if they are not giving you what you need then they need to be replaced.
I want to wish you all the VERY best in all of your endeavors and MUCH success and happiness in everything you do. Blessing to you and your cycles. Please take great care of yourselves...
Posted by: Kendra at Nov 17, 2007 11:48:23 AM
After 1.5 years and a lot of money (as you are all aware i'm sure) we got pregnant. I've been following your blog for some time, thanks. Here is our story about our IVF challanges.
Posted by: Philip at Jun 14, 2008 2:53:58 PM
Connie,
I realize your post is from a while back however this is the first time I will be going through IVF and I read everything I can on the internet to get some insite on what I have ahead of me aside from what my doctor and I discuss. I have to say that after reading your post it makes the most sense to me of anything I have read including comments from patients, doctors and literature. I believe in the positive affects of yoga and meditation and I have seen the power of that positive energy work wonders with difficult situations in my life. I am no expert but I also agree that eveyone is individual and age, weight and reason for infertility can all determine the protocol the doctors use so it can be quite misleading to read all of the information going back and forth about the meds because it may not apply to an individual given their situation. I thank you for sharing your thoughts as they helped me to redirect my focus on not only the IVF cycle but also to myself as I am still here and I don't want to lose me in this process. Good Luck to ALL!
Posted by: Kristine at Aug 19, 2008 9:21:55 AM
Sorry..that post should be addressed to Kendra.
Posted by: Kristine at Aug 19, 2008 9:26:07 AM
ok i am new at this ivf cycle ...but i am worried because my doc also has prescribed me a wopping 20 unnits of lupron ...dont know why..but still following order's!!! this is my first cycle and hope it be my last!! any coment's dont hesitate to reply!! thnx
Posted by: esmer at Apr 2, 2009 11:26:05 PM
