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Friday, September 29, 2006

CD29: 10DP3.5DT
Tequila Anyone?

** Warning: Extensive use of the word "fuck" today.


First the better news of the day:

CD3 FSH 9.2
E2 72

Both could be better but since I'll be 42 in two months, they're not that bad.

Okay, now for the totally fucked up news of the day:

Beta #1: 2.48
Beta #2: Less than 2.0

I guess they don't bother giving you an exact number when it's this low.

(sob)

I just wish that I knew whether this was residual HCG from my trigger or an embryo that tried to implant but didn't get too far.

We're both devastated, again, and in shock at how much we did for this cycle:

  • Two fucking trips to Mexico (treatment: $1200 + airfare/hotel)
  • Endometrial biopsies (mostly covered by insurance, but painful as hell)
  • 2 months of Humira ($600+ a shot)
  • IVIg ($2000+)
  • Rx: Lexapro, Synthroid, Lovenox, Dexamethazone, Folguard, PIO/Supps, Viagra Supps
  • And don't forget my June surgery where they took out my fibroids, my endo/adhesions/scar tissue and both of my Fallopian tubes.

We thought we covered it all this time.

Apparently not.

What did we miss?

Apparently quite a bit.

Well Dr. Moustache didn't mention to me that it would have been wise to have my uterus tested for beta-3-integrins or Cyclin E/P27.

Some background:
Beta-3-integrins are in a normal uterus at the time that embryos normally implant and act as a "glue" that helps them attach to the endometrial lining. In women that have endo, they are lacking these integrins most of the time (70% or more). Treatment for this? 3 months of lupron and then you have a two month window of opportunity to do IVF and get pregnant before the issue rears its ugly head once again.

He could have also tested me for Cyclin E/P27 in the EFT Biopsy. In a normal uterus, you find Cyclin E from CD1 till about CD18. Then P27 kicks in and Cycln E ceases. In a woman with endo (that's me) Cyclin E just doesn't shut off and P27 just doesn't make it's appearance as it should, if at all. Treatment for this, from what I can tell, is a combination of E2 and progesterone at the right times in the cycle. I'm still waiting to hear from Dr. Kliman on whether that is indeed the treatment protocol.

Both would have predicted quite accurately whether or not my uterus would have been receptive to accepting our last 5 embryos.

Both of these would be been easily treated with medication. In fact, we could have started treatment in June, after my surgery and right about now, rather than putting my last five embryos into my toxic wasteland of a uterus, I would have been giving them a chance at life.

I only found out about these tests from Dr. Feinman down in SoCal via our INCIID chat the other night.

Fuck!

Why is it that shit like this happens? You find out about what could have worked AFTER the cycle has gone bust. Does it always have to be this way?

You know how they say that people go through different stages of grief? Denial, anger, acceptance? I forget the other stages, but I went straight to anger and I am stuck there. I am pissed. Enraged even. If I wasn't on lexapro with most of my feelings and emotions unable to get out because of the drug induced stupor they put me in, I'd probably burst an artery in my head. Seriously.

I've written Dr. Moustache an angry-as-all-hell email and I sat on it all day wondering if I should send it. When I first started to write it I didn't have my beta #2 results in hand.

Now that I have them, I am motivated enough to fire this off and it will be in his inbox by midnight.

$30,000 later and NOW we find out about beta-3-integrins and Cyclin E/P27?

Bastard!!!!

Statia, if you're reading this I only hope that Dr. Pompy will entertain my need to test for this shit because that is where I am heading next. That is unless Dr. Moustache eats crow, gives me one raging discount on my next IVF, AND does every damned test that I want from here on out.

I kind of doubt he'll do that. So Dr. Pompy here I come.

Links to this post

Comments on "CD29: 10DP3.5DT
Tequila Anyone?
"

 

Blogger Thalia said ... (12:36 AM) : 

Linda, I'm so sorry about the negative cycle.

I don't know how to say this without being too assvicey, so I guess I'll just do it and you can choose to ignore me. I think you have to be careful about clutching at these alternative treatments. The beta three integrin stuff has very very mixed results, and the evidence that you're citing is very mixed and not at all conclusive. The EFT stuff I don't know about. If it's right for you, by all means go off and get these tests, but you might do all of them and still not get a positive - this is a numbers game and sometimes the numbers suck, big time.

 

Blogger Coloratura said ... (5:33 AM) : 

This blows. I'm so sorry...

I don't know much about these tests, but I know that Thalia is pretty knowledgeable.

On the other hand, I completely feel your rage. I am more and more convinced that the whole IF game is money game for these doctors. They do not look at individual cases, they are looking at their checkbooks. With every 'treatment.' None of them have any magic solutions. Even Dr. Hungarian can't be sure in every case, and readily admits that.

I hope you have success with Dr. Pompy. And I will be curious to see what Dr. Moustache says to your email. My guess: complete denial (he'll chalk it up to your failure this cycle, nothing to do with him) and he'll probably refuse to work with you because you've now offended his fragile doctor's ego.

Shit, this game sucks. May you get a better hand next time around.

 

Anonymous julianna said ... (9:30 AM) : 

I'm so very sorry.

It is all so devastating.

Take care of yourself my dear.

Thinking of you,

 

Anonymous statia said ... (9:34 AM) : 

FUCK FUCK FUCK FUCK FUCK.

I would say this:

Go see Dr. Pompy. Ask him what he thinks of all of this, and get his opinion on it. He might not agree with all of it, but he's an honest and good man and maybe he'll make you feel enough at ease that you may not need all of these treatments. I'm so afraid for you Linda, that you're doing all of this pre-emptive stuff that your body is flaring up from all of it. Like Thalia said (I think Thalia and I are in that opposite camp that you and I talked about.) all of this stuff is still just so cutting edge that we just don't know yet.

I say, just go and talk to him. what have you got to lose? I worried a little bit about not doing IVIg too in the beginning, because it was so engrained in my head to worry about if I was doing everything I could, but you know, once I talked to him, he was just so open about it and candid that even if he had told me that he thought my chances of having kids were nil, it wouldn't have changed my opinion of him. Like Coloratura said, Moustache is good at the denial, and he'll probably go so far as to say you went over the line.

I'm totally trying to not be assvicey either. I want to see you succeed so badly, because watching you get these negatives every cycle breaks my heart.

We should meet up for lunch. We type so much that my fingers get tired. :oP

 

Blogger Crystal said ... (11:28 AM) : 

I'll say FUCK too, just like Statia.

This crap is total bullshit.

 

Blogger Donna said ... (1:04 PM) : 

Fuck. I have no advice, but I do have two strong shoulders and a good back if you want to lean.

 

Blogger Millie said ... (1:56 PM) : 

I hope I can use the word fuck liberally as well. Fuck fuck fuck.

Ok. Technically you only skipped one stage (denial) because anger is stage 2. Then bargaining, depression, acceptance. I went to grad school with the famous woman who wrote about that (and met said woman at the wedding but that's a long weird story). And, frankly, I think anger is your best friend when dealing with infertility.

I know we talked about these tests at lunch but Thalia has a very valid point. The reason I haven't had these tests done yet is that my 2 fave REs and my new fancy obgyn don't believe in them and feel the science is week for both. Not to say it couldn't help and you might be one of the ones it helps but just to put it out there.

Thalia is also right in that it's a numbers game. FETs are never a very high percentage, even with donor eggs or embryos you're only looking at 20-25% chance.

None of that helps a bit because it fucking sucks. I'm totally up for tequila. And vodka.

 

Anonymous Anonymous said ... (1:38 PM) : 

Linda,
I am sooooooooo sorry about your cycle. I too,am interested in Dr. Moustache's answer as I believe he will keep on encouraging you to try again. All those dr's do. $$$ It just seems as like you could keep on looking and looking and while there will always be another new treatment to try, you maybe on a wild goose chase. Your goal is: to be a mother. I have all the same symptoms of you and gosh I never knew endo was such a curse when my 1st RE told me I have it. But it is. I would take the PCOS thing over endo anyday. Anyways, I think the Dr. Hungarian route is interesting. I am getting ill at reading those posts and thinking I may have all those bugs in my system those other ladies write about. I followed your self-medicating advice and went to my OB and cried infection. Got lots of antibiotics. I think adoption or surrogacy maybe the way to think now. Either way you will have a baby (adoption is a guarantee) and give your body a break. My thoughts are with you and I admire your strength and courage.
Marley

 

Blogger Sparkle said ... (5:58 PM) : 

Sorry to read that this cycle didn't work.

Amazed at everything you did.

I know that after I'd had my first three failed cycles I started researching all the immunology stuff looking for answers.

Once I'd done the Miscarriage Management Program here, that covered all the ACA's etc. I became satisfied.

The harsh reality is that maternal age is the main factor in embryo failure. The energy in the mitochondria is just not the same as in younger eggs.

In saying that, everyone has to find their own way through this.

Take care.

 

Blogger tonya said ... (11:09 PM) : 

Oh shit. That just sucks! Linda, I am angry and heartbroken for you. Also wishing there was an easier way.

Please go easy on yourself. And if you want to share a lemon spritzer (or three)-- they are blazingly alcoholic without feeling a bit like it-- I'll pour.

 

Blogger Ornery said ... (3:45 PM) : 

SHIT. I'm so sorry that you have to go through this again. Dr. Moustache has got to go.

 

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Ultrasound of a 9 week old fetus

Diagnosis:
elevated NKs, NKUs, 3 +APAs (2 borderline), heterozygous for MTHFR A1298C. Slightly low thyroid.

dq-α:
me: 1.1, 4.1
dh: 1.2, 3.1

Low LADs were treated in Mexico and elsewhere with LIT.
Anti-sperm antibodies
Article: LIT and the FDA

No: ANAs, normal TH1/TH2 Cytokine ratio, or x-DNA/Histones.

IF Treatments:
-Clomid #1: Sept 2005
-Clomid #2: Sept 2005
-HSG: Oct 2005
-Lap/Chromo: Oct 2005
-Nat'l IUI: Nov 2005
-IVF #1: Jan 2006, β1=2.0, β2=0.9
-IVF #2: May 2006, β1=<1.0
-Myomectomy (5), salpingectomy (both), & endo removed via lap on 6.6.6
-LIT#1 in Nogales: 6.16.6
-LIT#2: July 2006
-FET #1: Sept 2006, β1=2.48, β2=<2.0
-Dr. Hungarian Dx Oct 2006
-Dr. Hungarian Tx Dec 2006-Mar 2007
-IVF#3: Mar 2007 Canceled myself right before retrieval
-IVF#4: April/May 2007 Canceled due to dominant follicle
-IVF#4: August 2007, β1<2.0
-IVF#5: December 2007

Pre-ET
Feng Shui'd the House
500mg Zithromax starting with stims
4 LIT Treatments
17 Weeks of Humira or Enbrel
30g IVIg CD5 of IVF cycle (day 2 or 3 of stims)
30g IVIg 2 days before transfer
1mg Dexamethazone starting with stims
30mg Lovenox, 2X's/Day
0.0375mg Synthroid
Lexapro
Prenatal
Folguard 2.2 2x's/day
Extra 1g C (Stop at ET)
Extra 1g Calcium
Extra 400mg E (Stop at ET)
Nettle Tea & Capsules
2g Bromelain
Extra D3
Keep BMI<24
4-6g Fish Oil/Day
Baby Aspirin
Eating Loads of Protein!
Nettle Caplets
Femoral Massage (Stop at ET)
Acupuncture (Stop at ET)
TCM Diet: No cold or slippery foods
Immune Friendly Diet: No non-sprouted wheat, sugar, starches. Little fruit.
No nightshades
No caffeine
No coffee, not even decaf
No soy when in cycle
10 days Doxycycline

Day of Transfer
Light activity

Post ET Changes
Visualization
200mg progesterone capsules
Take it easy days 2&3
No sex til beta#1
Cut out egg yolks (contains immunogenic acid)






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