Depot Lupron: what doesn't kill you makes you...hotter?

I just started month two of the dreaded Depot Lupron to treat my stage III endometriosis and presumed beta-3 integrin deficiency. I don't know about any of you out there who've taken this, but for me this stuff is poison to my body and my mind. It honestly ranks up there at the top of the list of all-time unpleasant infertility-related activities for me.

I feel just completely taken over by Depot Lupron. This time most of the first month wasn't so bad physically (which is why you haven't heard me whining before this). For the first three weeks, I didn't seem to have many mood effects and experienced really no hot flashes. If it hadn't been for the prodigious three weeks of bleeding, I would almost have thought I'd gotten a bum batch of the stuff.

But all that changed about two weeks ago. Suddenly, the bleeding stopped, and instead I felt...hot and sweaty...had heart palpitations....and felt a profound bleakness descend (as evidenced in my last post).

Because I struggled when I took Depot Lupron last summer, I asked Dr. Schl. if there was anything I could take that would help ameliorate the mood and physical symptoms (apparently there is something, called "add-back therapy" that replaces a bit of the progesterone that your body isn't making). I asked for it not just for my sake, but for poor Will's and Moxie's sake. Not to mention the sakes of my patients and of the populace of the greater New York City metropolitan region at large. So this time, once the hot flashes and blueness descended, I started taking small doses of synthetic progesterone. It hasn't eliminated my symptoms, but I think it does lessen them a tad (hard to tell, but I haven't had to change clothes in the middle of the night because I'm soaking wet, or gotten super irritated at anyone, or killed Will, or taken a mental health day...so I think so).

So these little white pills seem to be helping, but the original prescription didn't include enough pills to do this twice (originally, we were only doing one dose because we were planning to cycle with the egg donor in December).  Given this, I called my nurse. You may remember, I haven't been thrilled about her from the beginning of our donor egg adventures...

When I reached her, I asked for a refill, and she said ok. But she also said (1) that I am the only patient she has ever heard of ask for a prescription for add-back therapy at the Denver clinic, and (2) that she thought it might decrease the effectiveness of the Depot Lupron for dealing with endometriosis and beta-3 integrin deficiency (I can't remember her exact words on this, but she raised it as a concern of hers). So I asked her to check on this and please get back to me.

I got off the phone and realized I was left feeling vaguely uneasy after our call. Why tell me I'm the only patient to ever request this? Her comment made me feel like I was asking to be coddled. Once I realized that's what was brought up for me, I was annoyed. Why shouldn't I be able to take something to make this a little bit easier if it's out there? Why shouldn't all of us?

And then on top of that, why opine that taking the add-back therapy might reduce this awful drug's effectiveness? Because the only thing worse than feeling like crap while taking this damn drug would be taking this drug and feeling like crap for no reason. And why would Dr. Schl. have prescribed the add-back therapy if it could cancel out the effects of the Lupron treatment?

Sigh.

Yesterday I got an email from her that Dr. Schl. said all is fine, nothing to worry about, take the add-back, the Depot Lupron will still do its job. So really, was all that necessary?

It's been an occasional pet peeve of mine throughout my medical journeys, this implying you are high maintenance for asking to have something suck just a little bit less. When I had lymphoma in my twenties, I had a mediport surgically implanted under the skin on my left upper chest to receive my infusions. For every chemotherapy treatment, the nurse would place a needle (called a Huber needle) through the skin that covered the port and connect it to my IV line. You should check it out, folks, because this is no ordinary needle; it's more like a thumbtack. And so it hurt. Especially because it was done every other week and your tissue really doesn't heal well when you're getting chemotherapy. I knew that there was a new cream on the market, a topical analgesic called EMLA. So one day I screwed up my courage and I asked if it could be prescribed for me. And I was told "That's only for pediatrics. We never prescribe that for adult patients." Which silenced me immediately. I felt like a big baby.

Similarly, after our first and second pregnancy losses at 7 and 8 weeks, my then-ob/gyn advised that I should have my D&Cs in his office sans anesthesia or any pain control beyond ibuprofen. So I did, twice, because I felt like such a wimp asking to be knocked out, when he'd made it so clear after I asked for an OR procedure that it should really be fine - and his other patients didn't mind it. Actually, I found the in-office D&Cs to be terrible, both physically and psychologically (especially because one time the equipment malfunctioned and he had to manually scrape the lining of my uterus). And consequently, I no longer use that ob/gyn. But why make it so tough?

So, yeah, obviously this phone call touched a nerve for me. And Depot Lupron has the effect of exposing all of my nerve endings and making everything feel...well...hotter. This nurse isn't so bad, but I do wish she'd keep her opinions, especially when they aren't based on scientific evidence, to herself.

Looking forward to finishing the dreaded Depot in about a month. Really hoping my sister checks out and can cycle so we have something to transfer, and then hoping that these two months of suffering help implantation go at least a little better than it might have.

I wanted too to say thank you guys for all of your comments and thoughts on the last post. It helped, it really did, to read that you all get it, or that you might not totally get it but you realize that. It means so much that you've stuck with us even though the tough times, that you're still reading and rooting for us. We appreciate it more than we can say.

Mo

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How I have missed thee

So sorry to be silent for so long. I've been reading your blogs, cheering you on quietly, not commenting very much at all. I have had my head down and have been just slogging through the depot lupron...one foot in front of the other. I don't recommend it to anyone, but those days are behind us.

Hard to believe it, but we have actually started a calendar for our embryo transfer, which is currently scheduled for Oct. 8. My depot lupron days are finally over and I am on to birth control (ha!) and daily injectable lupron, which will be followed by vivelle patches. Oh, yes! Estrogen! How I have missed thee! Let me count the ways!

Also I will start twice weekly electro-acupuncture momentarily to try to increase blood flow to my uterus. As of now, all caffeine has been stopped.

The idea that we will be trekking back to Colorado - and for a transfer no less! - still seems vague and distant, although I realize (somewhat dimly, it appears) that in less than a month we will be back in Denver. Wow. Huh. When did that happen?!

Also, next week we will speak to Dr. Schl. about how many embryos and which ones to put back. We vote for as many as he'll agree to. Maybe two normals + a day 7? We'll see what he has to say.

Thanks for hanging in there with us...here's hoping the other side of the mountain is approaching.

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Microarray results from IVF #7

Sorry for the long silence - and thanks much to those who have checked in on me, both on this blog and by email. I'm finding the depot lupron extremely difficult to tolerate. Feeling pretty miserable with it, honestly. It's knocked me for a major loop. I just took the second dose a week ago, so am at least at the halfway mark. Here's hoping the endometriosis is disappearing as I type. I can't wait to be done with this stage of things and to start feeling like myself again.

We've received the microarray results and wanted to share with you all. The news is fairly unbelievable - as in, it is so good that I almost cannot process the information. Will, too, is incredulous.

Out of our seven blasts that were tested from this latest cycle, FIVE were chromosomally normal. We also had one no result, which could also be normal. So only one confirmed abnormal.

Incredible.

Also - and this makes my and Will's hearts rest a bit easier - four of the five normals this time are day 6 blasts. The other is a day 7 (across both cycles, ALL of my day 7s have been normal, crazy, huh?)

So...with two CCRM cycles under our belts, we have totalled eight chromosomally normal embryos. Four that developed on time and without in vitro maturation.

Bottom line, we've got multiple tries here in case we don't get pregnant with our first transfer, which is something I never thought I would be able to say. Not something Dr. Schl. thought we would ever be able to say either. He told us back at the one day work up that he would let us cycle, but that we should expect to learn that we needed an egg donor. We cycled that first time really for emotional closure. Then threw in an extra cycle to boot.

And here we are several months later with EIGHT priceless normals.

Way to knock it out of the park, CCRM. I think you guys may have just changed the course of our lives.

Now if only I can survive the rest of these lupron days.

Mo

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On further consideration

It's definitely hot flashes.

Ever stand directly behind a city bus on black asphalt in the summer? That feeling is my new constant companion, albeit temporarily.

Extra love and thanks to Will for letting me chill our bedroom to the temperature of a meat locker. Picture me lying there with only a sheet on top of me and Will huddled, teeth chattering, under a down comforter. God, I love that man.

And, I'm sorry, Environment. I will make amends to you somehow when I have estrogen again.

Mo

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Hot flashes? Or just hot?

I'm a little more than a week into the depot-lupron adventure and am feeling fairly ok so far (Will hasn't moved out, so I'll take that as a good sign!). The biggest side effect thus far seems to be blinding headaches. And annoyingly, I started a full flow on Weds. Sigh. I am feeling very flushed, but it is difficult to tell if that is related to the medication or is just a result of the fact that there has been a record-breaking heatwave this week. My biggest fear has been the mood effects and although I've been a bit cranky, I'm not feeling much depressive effects. I am trying to hit the gym frequently to counteract anything that might crop up on that front. Aerobic exercise does a mind and body good.

Two pregnancy announcements of friends sent me briefly reeling this week. It is frustrating that I sometimes can't separate my own situation better from those of others. I strive to be happy for others' joys, even as I struggle to accept our losses and continue hope for the future. But sometimes it seems that everyone, EVERYONE is getting pregnant, having more than one child even, while we are still waiting, and somehow the longer we wait, the less likely it seems we could ever have a good outcome...although of course I also know that this is faulty reasoning, that things are in process right now, we've got the blasts on ice and will hopefully get some good news soon.

So hanging in there. Letting some time pass. Waiting. And hoping.

Mo

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Depot Lupron: what should I expect?

I'm turning to you bloggers, because, as always, I know that some of you have been here in my shoes, wherever it is that I'm standing at the moment.

And where I'm standing today is a bit of a fearful place. I injected the depot lupron on Wednesday night, 2.5 days ago, which was Day 4 of my cycle. Here's hoping my endometriosis is shrinking as I type this and helping pave the way for a smooth embryo transfer with successful implantation!

So far, not feeling so much of anything. But I have heard Baaad things about this drug.

I've done a couple of IVFs with a long lupron protocol in the past, so I've been on the daily lupron formulation for 10ish days before starting stims and then a low dose throughout those cycles.

But I've never taken depot lupron (and can I just say that that was a huge honking needle?! I mean, was that really necessary?!).

As I wait for the depot lupron to take effect, I'm a bit nervous.

So I'm turning to you.

Those of you who've taken depot lupron, could you take a minute to tell me your experience?

I want both the not-so-bad as well as the downright sucky...

Some of my questions: What dosage were you on and for how long? Dr. Schl. has me on 3.75 mg for two months (so two injections.) Did you have breakthrough bleeding at all? Did you ovulate while on it? How severe were the hot flashes? Did you gain weight? Did the injection impact your mood? How was your energy level? Were you too tired exercise? Did you lose your libido?

Also, was your experience the same throughout or did the symptoms worsen the more doses you took?

Anybody NOT have side effects?

Also, any advice out there? Something you wish you had known when YOU were taking it?

Finally, what was the impact of taking it? Any lessening of endo symptoms? Or change in Beta Integrin status? Anybody (out of those who used before transfer) have a successful transfer after it (...or not?)?

As always, all of your thoughts and experiences are welcome. Hopefully this will become a resource for those who follow in my footsteps taking depot lupron down the line - so know your comments will be much appreciated by me and by others out there searching for information about depot lupron for endometriosis and in preparation for embryo transfer.

Thank you!

Mo

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Moving ahead: onward and lupronward

I called CCRM and set up the transfer calendar yesterday. No matter what happens with the 7 blasts from the current cycle, we do have the three wonky-but-chromosomally-normal blasts from IVF #6, so we're going to proceed to transfer no matter what and will just transfer the best ones.

I had been debating whether to give myself a month off before moving ahead. Because I'm tired folks. And worn down. And really sick of how long and drawn out this process has been. Dr. Schl. wants me to go on depot lupron for two months due to my endometriosis and the idea of injecting that stuff during the height of a particularly brutal New York summer just isn't getting me excited. But when I talked to the nurse, we calculated that if I start the lupron RIGHT NOW, I will be able to transfer the blasts approximately Oct. 3 (30 days of depot lupron + 30 days of depot lupron + 1 week birth control pills + 6 weeks to build lining back up).

And, um, that already seems like forever from now, and I cannot even imagine dragging things out until November.

So start now it is. Today is Day 3 of my period and the lupron should arrive tomorrow. Poor Will. My mood hasn't really recovered from the IVF cycle and my sky high estrogen yet - heck, the all-over body rash hasn't even had a chance to go away. I fear that adding lupron to the already surly mix of hormones will result in one grumpy hot-flashy Mo. One who will be not so fun to live with.

At least I can say with confidence that we've been through worse (there's always a silver lining if you look hard enough). I'm trying to get my exercise and eating routine back on track, which should help immensely with mood state and energy levels.

Here goes nothing. To say we are nervous about this transfer doesn't even begin to describe it. But damn I'm ready to get this show on the road already.

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Lupron storm clouds

I am having a little trouble in the mood management department these past few days. A little blue, prone to tears, just slightly funked out. There is something unpleasant brewing at work that is contributing to this moodstate, but the depth of the blue funk, as well as its sudden onset right when I started the lupron and saizen, suggest that the meds are impacting my emotional equilibrium.

Will has been a champ. Not taking my sad mood on board, not taking the funk personally as something he's done wrong, or something he is responsible for fixing (you know how guys like to fix things? Will is no exception). And I, for my part, am trying to have my blueness affect him as little as possible. And hoping that once the stim meds kick in more fully that this will pass (today is day 2 of stims), the storm clouds will blow on past, and we can just focus on what we need to do for the next week and a half to finish this cycle.

Here's hoping. In the meantime, I have an urge to crawl off into a cave somewhere. But I will refrain. Crawling off into a cave never helped anybody. Besides, I don't know of any caves here on the lovely island of Manhattan.

Leaving for Colorado Sunday. Tentative retrieval date set for 10 days from now. Getting closer every day.

Mo

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Lupron days and restless nights

Three days into Lupron and I can definitely tell it's working. I feel downright...menopausal. Reminiscent of the first two IVF cycles and of my symptoms after the abrupt halt of my menstrual cycle caused by ABVD chemotherapy for my Hodgkin's 9 years ago (thankfully temporary - my cycles returned approximately a year after stopping treatment).

Needless to say, I don't have positive associations to hot flashes, night sweats, and the general all-over-achiness I am currently feeling. I spent last night sweating, tossing and turning, waking up poor Will repeatedly.

In my groggy attempt at positive reframing around 3AM, I thought, "Well, at least I know it's not a placebo." That's the best I could come up with in the pre-dawn hours.

This morning, I reflected on my ability to "forget" the harder aspects of IVF. Call it some kind of protective mechanism, I suppose. For me, Lupron is one of the more physically unpleasant parts of the process (that and the dreaded PIO shots). Note to self: I will start to feel better once I start the stims. Another note to self: Take it one day at a time. Stay sane. You can do this.

Mo