Saturday, January 19, 2008

Head. Spinning.

Well, well, well, I had my consultation with Big Snake Oil Immune Issues Clinic, who shall henceforth be known as Las Vegas Clinic because that other nickname is too damn long.


Well.

It was not what I expected.

I have always been wary of Las Vegas Clinic - in fact it is part of a chain - they have clinics all over the country.  I'm sure you know the one.  It was started by a controversial guy who does things his own way, is very much the show man and who pushes immune issues.  I am not a big believer in immune issues.  I mean, if the success rate for donor eggs is so high I think we can safely assume that none of those women had immune problems in the first place, but rather crappy eggs.  Sure, it has to be an issue for some people, but I tend to think that they are the ones with known problems like lupus or recurrent miscarriage or other such things.   Anyway, frankly I think they are pushing snake oil when they try to get people to do things like IVIg.

I would not have contacted them but for seeing that they are running various studies and as the financial resources are dwindling, the thought of getting an IVF for cheap was quite appealing.  I mean, if I am going to do another IVF with my own eggs, it might be nice to still have enough cash to do a donor egg cycle afterwards if it fails.  The RE, Dr. F., emailed me and said I might be a good candidate for their CGH study.  This is where they biopsy the embryos like with PGD but test all the chromosomes (PGD only tests some).  I have been worrying about this.  I mean, if I end up with only four fragile, crappy-looking embryos, might they all self-destruct if they are biopsied?  Even if one of them might have been normal?  And I had been saying that if an RE could tell me that all my eggs are abnormal, it might allow me to draw a line under this process and move to DE.  But surely the fact that none of my IVFs have worked leads one to the conclusion that all the eggs produced so far have all been abnormal.  Hence why they haven't worked.  So what is a test going to tell me that I don't already know?  In other words, I am my own assay.  We stick all the embryos back in and the good one sticks.  Or not.

So I was really just going through the motions when I went through with the consultation.  I was leaning heavily towards another cycle at Big Clinic.  Or perhaps they should now be called New York Clinic to lessen confusion somewhat.

But the RE was nothing like I expected.  He was very nice.  I liked him.  He had clearly gone through my file carefully and thought things through.  He did not mention immune issues once.  Not a once.  He first went through the final stages of follicular development, stating how the eggs are very responsive to the hormonal environment in the follicles.  He said how in the natural cycle the body picks one egg to ovulate, and that egg becomes responsive to estrogen in the final stages of development.  The rest of the eggs that had been developing along with it now respond to androgens that are also circulating, and die off.  He said how they believe that as we age, we are producing more androgens and also producing more LH too early.  That some of us (namely me) become over-sensitive to androgens and our follicles are reacting to the androgens by dying off or not developing appropriately.  That it is essential to avoid androgens.  And that he believes, by doing this, it may be possible to influence the quality of the eggs at the time of ovulation, because he believes that we can manipulate the hormonal environment enough that more of the eggs will develop properly.  As if they were the dominant follicle, and therefore will react to the estrogen and not go into apoptosis because they are instead reacting to the androgens.  He thinks this is why I have a dominant follicle problem - not because I'm producing FSH too early but because I'm producing LH too early and am too sensitive to the androgens.  That it's not that one follicle starts developing too soon, necessarily, but that the other follicles are going into death-mode too soon.

So he said he thought my issues were caused in part by the stimulation protocols that I've been on.  That I've been on too much LH too early.  That nobody's been controlling my androgen levels He said they had a new protocol that is being published in one of the fancy journals in February that he would like to try me on.  It involves BCP, preferably one like Yaz or Yasmin which has a good androgen-lowering effect (though he said all BCPs do it to some extent), then you start Lupron as if doing a long lupron cycle.  But they stop Lupron when you get your period and switch you over to antagonist on day 1.  Then they add estrogen and only after a few days on that do they add stimulation meds.  And they use FSH only to start with, and start adding small but increasing quantities of LH as you get closer to trigger day.  But much smaller quantities of LH than I've previously been on, and they use Luveris instead of Menopur.

Hmmm.

He didn't know if it was worth trying CGH either.  For all the reasons I had worried about it.  But he said I could try it if I wanted, and I could be in their study if I wanted.  But the study doesn't involve a cheaper cycle, but instead a very reduced cost second cycle if the first one doesn't work.  Which they kind of let you do anyway if you buy a two-cycle plan from them.  And CGH costs extra money so I am not sure that is worth considering at all.

I am going to speak to their financing lady on Wednesday to really crunch the numbers.  He said I could cycle at the end of March if the FET doesn't work.

Hmmm.

It was strange.  Here is an RE telling me about my exact problem.  That he has clearly thought about and has a protocol tailored for.  Previously it's always been me telling the RE's that I thought I had this problem, and steering them towards long lupron cycles because of it.  Here is a protocol designed for women like me.  Not a standard regular-old IVF protocol that they're using because they don't know what to do with me.

And he recommended I check out the fertility diet published recently in Newsweek - http://www.newsweek.com/id/73354 - sorry, haven't figured out how to link when posting from the Mac.  Because it helps with insulin resistance and blood sugar, and therefore androgens and all that jazz.  I liked that.  I liked that he suggested stuff I could do.  I liked that he was focussed on egg quality and not immune issues.  I quite like the thought of trying something different. 

So now I have a choice.  Switch to Las Vegas Clinic and try this other stimulation protocol in the hope of getting better eggs.  Or stay with New York Clinic and stick with the same old same old but hope that coculture and a better lab save the day.

Hmmm.  What would you do, internets?

14 comments:

orodemniades said...

Wow, that is so interesting! When I did my IVF cycle, Yasmin was what I was on...makes me wonder now what my LH levels were. I stopped the Yasmin and then began Lupron, and some time later the Menopur and Follistim...I wonder if he's advocating the same basic protocol that I was on, for you?

As for the choice, well, I'd have to say try LVC...I just think that you've had so many cycles with NYC and overall not good results that a change of any kind might do the trick. Yeah, I'm saying, go for the switch. What says your gut?

K said...

I'd say go with the Las Vegas clinic.

We did a consult with another branch, after attending a workshop. And had a really good experience, felt they were dealing with us personally and responding to our charts, rather than just pushing us down the conveyor belt on the assembley line.

After looking at my DP's chart, they were adamant that she should not be doing and meds, that it was messing her up, and why they felt unmedicated IUI's were the way to go with her at the moment. They also completely understood why weren't going to travel so far, and not be covered by insurance for anything for unmedicated IUI's. And wished us well.

We went back to our old clinic, and DP said whe wanted an unmedicated IUI. She came back with a high FSH for the first time (16.6), and the director of the old clinic really pushed injectables, and basically told her it was a waste of their time and her money, but she stuck to her guns, and got pregnant.

I am so grateful to the LV clinic, and really believe in them.

Good luck!
-K.

calliope said...

WOW!
I am just now catching up & just...WOW!

Go to LV! well, that is what I would do.

The fact that you connected so well to this RE speaks volumes to me- which might be a dorky pollyanna side effect- but I just really like that he is dialed into your path. It seems like you speak the same language.

Also- being part of a study just feels like you will get more attention and not be part of a crowd.

I hope the finance works out. I really can't wait to hear more!

seriously- this is really cool.

xo

Amy said...

I posted on their forums and DR F said the same protocol to me. (poor responder, "sticky eggs" etc etc) I'm on my 4th IVF. I got the same speech from him. Personally I'd love to try the protocol but I'm not willing to travel that far quiet yet.

I think you should skip CGH and just transfer all the embryos...then again if you are lucky enough to get more then usual then maybe you can decide to do CGH last minute??? keep it an option? I definitely think CGH will give you insite but how much does it cost? EXP: if you have 4 embryos then transfer them...(knowing your history I don't think you are at risk for high order multiples). If you have more like 8 (I know you might be chuckling at this point) then I'd do CGH on them since transferring 8 would be NUTS!

Good luck!! I think the protocol is worth a shot...I'm jealous that you get to try it. My new clinic (local) is doing an LH/FSH combo on me after 25 days of the BCP. Oh and I'm doing antagonist but it will be added later in the cycle. part of me wishes my RE would do antagonist from day 1. I stim to fast and i think adding antagonist on day 1 will help slow down the growth of my follicles. I'll talk to my RE about this at my consult on the 23rd. :)

Stephanie said...

Well, you already know what *I* think!!

Anonymous said...

Wow, I'm reeling, reading this. I never thought you'd seriously consider LV. And it REALLY does sound promising, doesn't it?
I think I'd go there. No, I'm sure I would.
I do think you need an out-of-the-box thinker. Plus, I think it's a good sign that he evidently spoke to you like you knew this stuff. I love that.
I love the fact that he took the time to review your case carefully, too.
I can't imagine that you'll be disappointed in the financial consultation on Wed. NYC clinic will probably be more anyway, especially when you consider the cost of hotels in NYC vs. LV.
Any chance you can stop by Phx on your way there or back?;)
-Margie

katty said...

I haven't got any advice. But I'm really glad you've got a positive response and a human sounding doctor. Urging you luck and success and happiness from over here in England.
Kx

Casey4 said...

Sarah - go for it. The other clinic won't do anything different so you might as well go with a clinic that offers something new.

Sara said...

I'm leaning toward LV too. I love it that they're tailoring their recommendations to your specific issues. It's obvious that at the very least, they're thinking about what will work for YOU, and not just what usually works for the "average" patient.

Honestly both clinics are good options, but I think that if (god forbid) it doesn't work out, at least going to LV will allow you to know that you left no stone unturned, KWIM? If you pass it by, you may always wonder.

Tricia (FF) said...

Sarah, I like the "snake oil" clinic too (RFLMAO reading that first line by the way!!)
Obviously not for the snake oil itself, but the careful consideration of your charts.
I've looked at that protocol before, but they don't detail it too well in the abstracts, and after I prematurely luteinised on IVF#5 (#%#*&^%%!!!!!), it sounds even better. I think my Brisvegas Dr would be entirely open to it!
Lead the way!
I think it sounds like a great fit for you. And on the extra chromosome testing - one of the clinics in Sydney started doing that, testing all chromosomes and had their pregnancy rate plummet. I think they have now gone on to polar body testing (using polarised light to check the polar body of the egg BEFORE fert.) with much better results. I'd be wary of the other especially if you're going to transfer anyway.
xxxx Tricia

Laurie (FF) said...

I'd try the LV clinic. It's new and different. The NY one seems like the same old thing.

sassyredhead said...

Hi Sarah - lurker here. I say go for LV! I had a friend that cycled there and she had a better response there than any other cycle. Unfortunately she had an early m/c but I know she would go back if she could. Good luck!

MLO said...

Go with LVC. I'm going to another of their clinics and can honestly say they have been quite good at dealing with us. We got the best embryos ever in our last cycle (probably killed by my hydros.)

They are aggressive, but if you are over 35, you don't have time not to be aggressive.

singletracey said...

Go with LV.. sometimes you need something new!