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Monday, May 13, 2013

when doctors disagree


Thank you to everyone who weighed in on my local clinic vs. CCRM dilemma.  
You may be wondering where we are with this decision.
Unfortunately, no closer to clarity than we were last week.

My local RE, Dr. M, is now back from vacay and wanted to talk with us. I had a phone consult with him today on my lunch break. A was not on the call as he had to work. However, A is back from the strike team. They put out the big fire in Ventura. Your prayers were much appreciated.

Here's what Dr. M had to say.

1. The 2010 SART data reflected a really bad year for my local clinic and a really good year for CCRM. In 2011, SART data shows the local clinic with a 3.5% higher success rate than CCRM for my age group.
True story. But I take this with a grain of salt because I think CCRM's cases are tougher.

2.  In regards to Dr. Surrey's concerns with Diminished Ovarian Reserve, Dr. M said that he looks at FSH (mine was normal), AMH (mine was borderline) and antral follicle count (mine borderline) to predict how a patient's ovaries will respond to stims. We now know that I don't respond well and that I need an aggressive protocol. 
Basically, what I take away is that he doesn't think it matters whether I'm borderline DOR or not...as all of this is used to determine protocol. And we already know I need an aggressive one.

3. Dr. M said the reason we tried the long Lupron cycle last time was to suppress my endometriosis. Unfortunately, it suppressed the stims as well. He is recommending the most aggressive protocol for me now - no BCPs, Ganirelix and estrogen patches to synchronize the follicles, and max dose of stims - 225IU Follistim and 225IU Menopur.
I'm a little skeptical because he changed my protocol now that I got a second opinion. Added estrogen patches and removed BCPs. Why? Did the other doctor point out something that he missed? Was he not really feeling 100% with his initial recommendation? I know I have trust issues (my personal baggage) but it makes me wonder. 

4. Dr. M does not think I need a sperm fragmentation test. He doesn't see any value in the information it will provide. Plus, it only tests 100 sperm. A has a good sperm count and his motility is fine. His morphology is borderline. But that is why we are doing ICSI. He said that with the roughly 10 eggs he hopes to get...there will be plenty of good sperm to choose from. I said Dr. Surrey would put A on supplements if he saw anything odd with the test. Dr. M said A could take a multi-vitamin.
I'm not sure how I feel about this. He was rather dismissive and I don't really know much about this test to have an opinion one way or the other. 

5. The beta integrin 3 conversation was really the most interesting and controversial part of the discussion. Just like Dr. Surrey, Dr. M has also published papers on this topic. He said a whole lot about this subject that would be hard to paraphrase. But here's the gist. The beta integrin 3 test was created in 1950 and it's flawed. Many RE's do not test for this anymore because the tests are often inconclusive. The beta integrin 3 can be absent one month and present the next. Since it is tested by taking a biopsy of your uterine wall, you can't do it the month of your IVF cycle. 

He said the study concludes that a lack of beta 3 results in poor prognosis to IVF. But he doesn't think I need the test. He can just put me on letrozole, just in case. He sent me the study but I don't speak medical too well. Here is the conclusion directly from the study. 

We report an association between low pregnancy rates in IVF and 
an abnormal integrin expression by EMB obtained in a natural cycle. 
A lack of integrin expression was highly associated with endometriosis. 
Unexplained IVF failure in a subset of women with endometriosis 
may be avoidable using a simple 5-day treatment of the 
aromatase inhibitor, letrozole. Recognition of the importance of 
undiagnosed endometriosis in women with IVF failure, 
recurrent pregnancy loss or infertility, offers enhanced opportunities to treat patients 
with suspected implantation failure. Based on our findings and previous 
studies in IVF, the use aromatase inhibitors 
might improve the IVF success rates in a subset of women 
with endometriosis. Further, integrin testing may be indicated in 
women with unexplained infertility or mild endometriosis to 
better define the risk for unanticipated implantation failure with ART.

Great info, right? But to this I say...where was my letrozole before this consult? Why wasn't this being considered before since he knows that I have endometriosis. He said my endo isn't "that" bad so doesn't even think it will be an issue.

6. Dr. M did say that he thinks we should check one more thing. He'd like to measure my growth hormone via an IGF-1 test. If it is low, he will add growth hormone to my protocol.
I haven't been able to find anything on Dr. Google about human growth hormone and infertility so I'm left scratching my head on this one.

7. Lastly, upon my suggestion, he said it wouldn't be imprudent to do a hysteroscopy since it has been a year and four months since my laparoscopy.

In conclusion, Dr. M said it comes down to whether I want to work with him or Dr. Surrey. He did acknowledge that CCRM is one of the best clinics in the country but he also thinks his clinic is good. When I told him that I've heard that CCRM's labs and embryologist are the best. He didn't disagree.

I think I already know in the pit of my stomach what the right decision is. But going to CCRM just feels like starting completely over again from the start. More paperwork. All of the tests over again. So much more money. Sigh. A and I will regroup later this week and make a decision.

In the meantime, has anyone done the Ganirelex/Estrogen patch protocol? What about the letrozole (or Famera)? Any thoughts on Dr. M's perspective versus Dr. Surrey?

P.S. Love you guys for helping me navigate all of this craziness. It helps so much to put it all out there and hear what y'all think. 


30 comments:

Amanda said...

Oh man… that's crazy tough! It sounds like both doctors stand behind their findings and their practices… ughh, cant somebody bow out gracefully? I remember when I was checking out other clinics… it didn't matter what the topic, somebody would scoff at the recommendation of another doctor. I wanted to scream! Hang in there!

Shannon Elise said...

Don't know anything about the protocols...but like you said; it seems like you know what the right decision is. It may mean more paperwork, and yes (unfortunately) more money, but if CCRM seems right...go for it! There is no right or wrong answer. It is what feels right to you and A. You know I am always rooting for you!!! I hope you get your questions answered soon. xoxo

Laura said...

You are doing a fabulous job advocating for yourself and getting as close to the "bottom of it" as you can. Bravo (and hugs).

Mrs Green Grass said...

No advice this time, just well wishes! I'm rooting for you!

Aramis said...

Re point 5: My husband had decent morphology and motility, but it was only with the DNA fragmentation test that they discovered the problem with his abnormal acrosomes (the little drill that breaks into the egg). He was put on a special Male Fertility Supplement (it's actually called that if you want to Google it) as a result. It hasn't really made any difference to us yet, but my clinic routinely does the fragmentation tests on men as part of the basic workup. Just my two cents. Also, the protocol you will be on is likely the same one that my RE will use for me next time out, it's called estrogen priming. Women with low AMH and DOR apparently seem to respond well on it. Good luck with whatever decision you make!

Gypsy Mama said...

Thanks so much for all this info!! I actually plan to ask my new Dr about Letrozole after reading this!

If you know in your heart what you want to do then don't worry about the money and paperwork, just give CCRM your all. You are lucky that you have a gut feeling on this decision, it would be harder if you were at a loss. I am sending you TONS of good vibes and I can't wait to hear what you decide to do :)

ousoonerchick said...

Best. I hope that you can find peace in whatever you decide. I would say pray, go with your gut and pick the one you won't regret. Mostly if you stick with your doctor don't think we'll if it fails will I always wonder what if we'd gone to Denver. Good luck babe! I hope you're getting my full comment. Stupid phone!

Sarah at Midwest Pillowtalk said...

letrozole. definitely what i had.
i hope you find clarity soon!

faithtrusticsidust said...

I admire you for how much you are fighting so hard to get the best treatment. Lots of people would just go with convenience and not bother to double check. Good for you & good luck for whoever you decide to go with!

JoJo said...

Sorry that I cant really weigh in on the protocals you received from both REs. All this is fairly new to me. Praying/ hoping A & U make the best decision for both of you. Go with your gut feeling.

Emily said...

A couple things....

My RE totally agrees with Dr. M on the beta integrin 3 test. He said it's old science, unreliable, and unnecessary. I had never heard the incorporating letrozole could be used as a safety guard just in case though. I wonder how many tests exist suggesting this? Is it just one? Was it double blind and controlled? Are there more studies out there to corroborate it? I guess it can't hurt either way to add some letrozole, so what the heck.

I know it's frustrating when RE's seems to flip flop so easily like this. My RE actually told me at first I'd be on long lupron, then switched to microdose flare, and then when I questioned said, "You really could do either." Well, I wanted to do flare all along (something in my gut since I have had low AMH in the past 0.88). I did not want to be overly suppressed, so I said definitely microdose! I'm glad I did because it turned out really well (even though no BFP) I'm glad we went with that one. However, it left me relieved I didn't do the other one and kinda annoyed he would even allow me to try the other one. I knew in my heart microdose was the one for me, so why was he giving me options?

I think RE's have so many things in their toolbox. There is no way for them to predict if any of it will work. So, when a patient brings up certain things they just look in their tool box and say, "Yeah, I've got one of those. If that's what you want we can try it. No guarantees, but we can do it!"

The hardest part of this whole journey is that this science is NOT exact. I'm sure it's frustrating for the RE's too. It's all one big trial and error game really. The only way to find out if it works or not is to do it, modify, try again if it doesn't. It doesn't sound like your clinic is too far off from CCRM's success though and if they had even better in 2011, that's impressive.

Sounds like more talking and sleeping on it is in order. I think the most important thing is that your current RE isn't trying to do the same thing again you did last time. If he was, it would make the decision to go with CCRM easy, but he's not. He's willing to try something new, so now it's up to you two to decide if you are willing to let him have another shot at it. I know it's so hard!

Praying for clarity in your decision making process. Happy that hubby is safely home to make them with you now.

Aubrey said...

VERY interesting, stuff! Once we decided we were going to CCRM, we cut ties with our local RE. Mostly, b/c I really liked my local, RE and I didn't want to be faced with a tough decision on whether or not to give it one more shot with them!

Anyway, with CCRM, I'm going to be on their strongest protocol. Testosterone priming for a month first, then an antagonist protocol with Ganirelix. Not sure if that helps or not, but the interesting thing is that I was always on my local RE's most aggressive protocol, too. Except, I never did any priming the month before...

All of this is just so confusing! Best of luck with navigating your way through figuring out what is best for you guys!!

xoxo

Suzanne said...

Oh wow. I can see why this is so hard for you. Not sure how much this will help, but I'll throw out what I have been told by my doctors after my consult with CCRM. (the conflicting answers also threw me into a tailspin and I still doubt my decisions daily).

Regarding the beta integrin. I spoke with 2 RE's regarding this and both said I didn't need it. I had not heard about the letrozole aspect, but they just said since I had the lap in February, my endo was treated and they brushed off the need for it. I often come back to this subject and wonder if allowing it to be pushed under the rug is the right thing.

I wish I could tell you more about the protocol. I DO know, it sounds similar to what I'll be on and I am also DOR, however, more severe (FSH 18.5, AMH <.16). I'm not sure how they plan on administering the estrogen patches on you. Is that for priming, or during the stims or after the transfer? My protocol will be the Antagonist with Saizen (human growth hormone). Because of the high dose of stims I'll be on, the hGH can help save the egg quality that the stims could negatively effect. I will have no bcp prep, baseline on cd 3, then start 450iu of Gonal-f and the Saizen on cd 5. The Saizen will only be taken for 5 days, after that they will add in the 150iu of Menopur and Ganirelex. At some point, (I think after the transfer?) I will start the Vivelle Dot (estrogen) patches.

That said, I do think the protocol that he's giving you makes sense for DOR.

I wish I could tell you how this works, how I respond, and hopefully, we'll know soon enough!

I know you're plan is only one IVF. So ask yourself, will you have regrets if you go to your current RE and it doesn't work? Will you have those same regrets at CCRM?

Many, many good thoughts coming your way as you make this hard decision.

Always Maylee said...

This is such an overwhelming amount of information. My head is spinning just from reading it, I can't imagine you living it. I have no idea what the right choice is, but I really believe you should go with your gut. Make a decision where you will have no regrets afterward, no matter the outcome. If that means having to sort of start over, so be it, if you gives you more hope and more of a chance, then perhaps it's worth it.

Sending you positive and happy thoughts! xo

Andy said...

I did Ganerlix + estrogen patches. I'm not sure that it was the same protocol as you will, but it wasn't that bad...and we were "successful" that cycle.

I wish you good luck in making this choice.

Mel said...

When we decided to go to CCRM, it wasn't easy...but knowing our local clinic was horrible I wanted to give IVF one last chance...and I really wanted answers more than anything. This is something I knew we'd get from CCRM since our local dr refused to test basic labs like AMH.

As for protocol...I was on the same protocol at CCRM as I was at home but the big difference was that I was on 1/2 (less) drugs as we did when we used our home clinic. It made the biggest difference ever! We went from having a max of 7 eggs at home on full stims (450IU) to 18 eggs at CCRM with about 225IU. I thank Dr. Surrey for that!! The lab is super at CCRM, you can't get a better lab then theirs.

Hope this helps. Please email me anytime...
Mel

Darcy Kristy said...

I read this last night, and hoped I would have some great insight by morning, but no such luck :-[

Instead, I can just tell you what I **think** I would do in your situation....... you are in a really tough spot, and there is SO much to consider.... but, it seems by your writing in you recent posts regarding this issue, that your gut and ♡ tell you ccrm??

I **think** I would go with ccrm. Mainly because if you only have one shot (which many of us do) and you are considering ccrm at all, you might as well take the leap. I feel like if ccrm really is an option, and you i didnt take it, and then wasnt successful locally, I would never be able to let go. I feel there will be regrets and what ifs no matter what, but I would want to give it our very best shot.

ksirahsirah said...

Wow. What a ton of information- no wonder you are having a hard time navigating towards making a decision.

From all that I have researched and read (thank you for educating so well) IVF is not a perfect science, and a lot of the protocols are by trial and error. (Expensive trial and errors, I might add)

I love that you were able to talk so candidly with Dr. M about your second opinion from CCRM. You are being your own advocate and I commend you for that- What I like about staying with your current Doctor(Dr. M) is that he knows your case very well, has treated you for awhile and you will not be starting from scratch. Might just be me, but if I were in your shoes, which I very well could be in a few short months, is that if I had to travel to Colorado and start all over with testing and new faces etc.. my anxiety would probably get the best of me and the pressure would be unbearable to the point of being counterproductive-That’s me though.

You have to do what is right for you and hubby, you have walked this walk before and know what it’s like to not respond to medication and end up with a failed cycle from the start. Trust your intuition here. From your post, it sounds like CCRM is becoming first choice, but ask yourself why. Also, between both doctors is there anything that you feel they are missing or should look closer at? If so explore what that is.

Regarding Letrozole -Kaiser had me on that for about three cycles last summer/ early fall. I responded well, but no pregnancy resulted. Also, with every cycle I took the drug I ended up having a large cyst by the beginning of the following cycle that would force me to take a break from medication. Also, I ended up with a few polyps that “may or may not” have resulted from taking the letrozole (Femara). That is why I had my hysteroscopy this past January to remove the polyps. Which by the way-only was discovered through a second opinion with yours truly (Dr. M). Message me anytime you need to talk-here for you as you make this big decision.

Just T said...

It is so frustrating when you have different opinions. I think honestly they are both right. Finding the protocol that works is so important and time consuming, plus financially and emotionally draining.

I have had great success with Femara. Although no successful pregnancies I have gotten pregnant 3 out of 4 times taking it.

Wishing you the absolute best on whatever decision you make.

Annabelle said...

I don't have much advice to offer with regards to your questions at the end but some insight into something I will be doing for my IVF cycle. I have endo also and my RE will be putting me on Interlipids before ET and during pregnancy if it is achieved. Apparently, those of us with endo run the risk of having natural cell killers that will not allow an embryo to implant. (I don't know the exact science behind it but my insurance covers it so I'm doing it just in case) Wishing you all the best!

~Annabelle

Cristy said...

First off, if you'd like, I can take a look at the article. Just post a link to PubMed and I'll read over it.

It's always frustrating when physicians don't agree and it's even worse when it feels like they're one upping one another. I also get where you're coming from about the frustration of switching clinics as it does feel like you're starting from square one. But you're not, regardless of what you ultimately decide to do. And you're doing the right thing now with assessing your options and weighing what feels right.

Glad to hear A is home safe and thinking of you both as you review the data you've collected. And please, let me know if there is anything I can do to help.

JenS said...

Ok. First of all, my RE was just as dismissive about doing anything to help my husband's sperm as yours is. He basically said since we are doing ICSI it didn't matter. He had enough good sperm for that. My husband was pretty sure that quality was an issue even if they looked fine so he took it upon himself to start a whole regimen of supplements and acupuncture and chinese herbs and eating sperm-friendly foods. It did improve his numbers, though we have no proof if it helped the quality.
Also, I was on that exact protocol WITH human growth hormone. Apparently, the HGH is supposed to help egg quality. I don't think I was ever tested for it. I think my RE uses it as a standard part of his treatment. I had no BCP's, max doses of follistim and menopur, ganirelex and estrogen patches. I was on this same protocol for all 3 IVF's with different doses. Once they upped me to the max doses from day 1, I had a much better response. I have an extra ganirelex and some patches leftover if you decide to go that route. Let me know if you have anything more specific you want to know about.

Kari said...

I don't know if this will be of any help but after nearly 2 years (1 year of just trying off and on and 1 year of trying and waiting to be referred) we referred to our RE. We went through several initial tests and nothing came back conclusive to as to why were weren't pregnant (other than my left tube MIGHT be blocked) I took Femara for three months and on the third month got pregnant (but we lost the baby after the 7th week). They don't know why it worked or really what is wrong with me (my husband is fine) but I go back in under two months to start Femara again. I had no obvious side effects from it. I took it on days 5-9. I had no issues with it. I don't know if that helps but I thought I would tell you my experience with it.

Alicia said...

You're on your way! Rooting for you too! :)

alesha said...

You are seriously so brave and strong. You're still in my thoughts and prayers!

Laura said...

There is definitely some great information there, this is not an easy choice. I'm sure that you and A will make a great decision though!

Praying for strength and clarity to you guys!

kharini said...

The thing with the beta integrin is that it can be present in one cycle and not present in another. You do have endo, and it's pretty common for the protein to be missing on patients with endo. So instead of testing, what I would do, and CCRM does this all time, is to do 2 months of Depot Lupron before transfer. And I would definitely do that if I'd be you. Don't bother testing. But what this means is that you have to cycle, freeze your embryos, then do the Depot Lupron and then transfer. Which means you need a GREAT lab and that to me is CCRM.

In terms of protocol, I think the best for you is the Antagonist. And I believe that is what CC.RM is suggesting, very aggressive protocol, I think they call it the PAL, with added estrogen. I think that sounds wonderful.

I know the extra money and the travelling seem overwhelming, but I would just go for it. Either way, whatever you decide, I'm here to support you. xo

Mrs B. said...

Ah! So much to think through! Sorry I can't help and weigh in on this one. I know that it's going to seem like starting from square one, but if you're giving it one more shot its going to be the best shot. Best of luck and whatever decision you both make will be the best one.

Anonymous said...

I tried to post the other night to run, not walk to CCRM. You made the right choice. Take comfort in that and enjoy Your time in CO when you go for your retrieval. Every day will be filled with new information and its really a time to focus on you, your care and cycle. I'm so happy that you decided to go there.

Amber said...

Sounds like your local RE is a little bent out of shape that you might choose someone else, or that you got a second opinion. In a way, I can understand that. However, I would think in the field of IF that all the more insight would be appreciated. You have a ton of information that would make anyone's head spin in circles. To with your gut, in what you and A think will be your best shot. Bottom line, you have to be able to be okay with whatever the end result is, success or no success, it has to be something you can live with. As much as I want our bfp this time around, I pray every day that we are just happy and content with whatever the outcome may be. We have to be able to live a full life with each other knowing that we gave it our all, even if it ends up being just the two of us.

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