2nd Opinion Update/DOR Protocols/Very Long

ronniesgirl1981

Our first appt was with Dr. Mol.inaro at R;MA'NJ.  We spoke at length, but my biggest takeaways were that he believes my current RE is not prescribing enough FSH; he would do an EPP protocol without BCPs; and he believes my AFC testing was wrong...repeatedly.  Because my current clinic is big, you never know who is going to do your ultrasound.  I have had my AFC measured by multiple people.  Aside from a weird reading of 5 (which my nurse explained as only a partial count), my other readings have been between 15 and 22.  Dr. M counted 8 yesterday.  My AFC has never made sense to me with such a low AMH level.  It pisses me off.  Has it always been this low?  Who is right?  Is Dr. M right when he has examined me once when my other RE has examined me many times? 

In the end, I like Dr. M.  He sees no problem with me doing my monitoring locally and says that he monitors some of SG's patients and SG monitors some of his patients.  He said, "we are all adults and we are all professionals."  He would like me locally when it gets close to the end.  He is definitely more aggressive/open-minded than my current RE, but he also feels very practical.  If we can swing embryo banking and CCS, he'd recommend that as well. 

We then met with Dr. P at S/I:RM.  Dr. P would also do an EPP protocol.  His was quite convoluted...BCPs, Lupron, estrogen priming, gonadotropins.  The BCPs and Lupron scare me a bit...just because my MDLF protocol was awful.  He would be very aggressive with stims.  He admitted it was controversial: 750 units.  He wants to do all of my monitoring himself.  He believes there is no substitution for actually examining the patient.  He would let me do my baseline at SG, though.  He did say that because there is no risk of OHSS and--because I'd already be at max stims--he couldn't possibly increase the dosage, he wouldn't need to see me until around day 9 of stims, so it would be about the same amount of out of state monitoring.  Dr. P already wrote me a script for the first tier of autoimmune testing.  He said he had been thinking about it a lot and it is reserved for patients with repeat implantation failure.  I started to speak and he cut me off saying, "I know what you are about to say...you might only get one shot at this...I'll write you for the testing."  Which was exactly what I was about to say.  Dr. P also said that he no longer prescribes PIO (yay!!), so there's that.   

Dr. P strongly supports embryo banking and CCS testing.  His prices were reasonable (we are OOP for FETs, freezing/storage and CCS testing).  I didn't get pricing from Dr. M.   

Dr. P feels a bit kooky to me.  I really liked him, but I get that he is a bit controversial.  My current RE would probably be appalled at his proposal, but I wanted someone who is thinking differently.  I get teary-eyed every single time I talk about my failed cycles to a medical professional.  I didn't with Dr. P and I feel like that has to mean that he makes me feel comfortable.  Or it may just mean that I spent the whole day talking about it and--by that time--I was totally over it... 

And S/I:RM doesn't report SART data...which is weird.  They do publish their stats, but only on their own website.     

Both agreed with my current RE that there is no need to do a lap and no need to do an endometrial biopsy.  That feels good. 

So that's where I am.  I am going tomorrow to get all of Dr. P's tests done.  He said he'd call me when the results came in and I am going to hammer him a little more about my concerns about the Lupron and BCPs. 

If anyone has any thoughts, stories, or questions I haven't thought of...I'd love to hear them. 

missmarypoppins

Wow girlie that's a lot to take in for you!
I'm wondering about Dr M thinking your AFC is wrong just because different techs do it. I totally get that measurements are off by a mm here and there when different techs are measuring growing follies, but how hard can it be to count the follicles??

I am so confused by any protocol that involves bcp for DOR patients. I mean I've never heard of someone saying it worked for them so I would definitely ask a lot of questions about that. FWIW My current RE was appalled that my old RE had me do bcp before IVF#2 after seeing my poor response during #1.

That is so exciting that Dr P is starting immune testing! Is it a standard RPL panel that he's ordering? Are you still thinking of seeing KK? I'm glad you found someone you're comfortable with!

ronniesgirl1981

@missmarypoppins We wrote me for anticardiolipin antibody, lupus anticoagulant, and antiphosphatidylserine. He said that if I got a funky result on any of these, he'd write me for other tests.

Also, I have called Dr. KK's office multiple times and only got VM...then I gave up.  It's still on my radar, though. 

@katemonster1 Is it weird that I didn't ask that question?  It was on the tip of my tongue, but I couldn't make it come out.  I think I was afraid of the answer. 

zeynsom

My first fresh IVF cycle we did 600 Follistim/day (which is max they give). But afterwards when I had the consult with two RIs (reproductive immunologists) they both said that they would probably want me to do less than 600 even though I am DOR. They said that even with lower stims I would get similar number of eggs and too much hormone fries the eggs. I'd be very careful with Dr. P as a result

Grateful&Thankful

***PAIF

Glad to hear you were able to get some new opinions/fresh ideas. Obviously everyone responds to stims differently, but when I made "weird" decisions, my embryos looked better. I have a maturation problem on top of my DOR & I still haven't been able to correct the maturation issue 100% but my embryo quality improved DRAMATICALLY. We cut out about 80-90 % of the menopur & only used half a vial of it after 3/4 days of stims. We chose to kick up the gonal f instead. We used anywhere from 600 - 500 of gonal f at the beginning & then dialed down at the end. We also did long lupron protocols instead of EPP or MDL. LLP is usually unheard of for DOR patients but for some reason it worked best for me. So basically, you just never know what's going to work until you try it but I just wish it didn't have to be such a big gamble-esp financially. My first RE told me I'd never make it to ER without using at least 150-300 units of menopur. He was so sure of himself & confident but I ended up getting better embryos using way less menopur. ART is an art and the opinions on protocol differ wildly. Sometimes out of the box works. I know it's a hard decision & I wish you lots of luck with whatever you choose. 

nowthatsalady

ronniesgirl1981, I've been following your story for awhile particularly because we are the same age and both have DOR. I know your RE gave you the donor talk, so I am so happy to hear that you have had two very productive appointments with options to move forward with your eggs. I'm also glad to hear you'll probably be doing the EPP. I've heard that is CCRM's preferred protocol. I just got done with it. I certainly had more active follicles and eggs retrieved, but unfortunately, I didn't get any more mature than with IVF #1. I feel like it slowed me down too much, but everyone is different. The first tier of autoimmune testing sounds like a good plan.  And with the number of success stories I've seen with embryo banking and CCS testing, I'll definitely be asking about that too. I really really hope this next round works for you.

Twinkie0612

It sounds like you had some good 2nd opinions.  I cycle with a SI.RM clinic (different city) and their protocols are "outside of the box."  I've always wondered if the BCP and lupron down regulation oversupressed my ovaries.  This cycle is my first cycle doing a EPP protocol with them, so we will see if that makes a difference for me.  My biggest reason for sticking with them is because they are immune friendly (although they stay pretty basic with what they test for and treatments).  I also like that my current SI.RM doc was willing to think outside the box and prescirbe lovenox even without a diagnosis.  It turns out my diagnosis from the RI required it anyway, but after 3 failed IVFs I want to make sure we leave nothing on the table.

I consulted with Dr. Mol.inaro as well and really liked him.  His approach is very different than what we have currently been doing.  Unfortunately the price and the travel took them out of the running for us.  They are also not immune friendly, which would have made cycling with them harder for us.

lebradford

That sounds extremely informative (though probably confusing too)! It seems like Dr. P, both in terms of his protocol and testing and the way you felt interacting with him sounded really promising. I think either option would be a great next step though. Good luck with your testing and next steps!!

przemosbabe

I don't have DOR at all but for some reason I always end up reading about it and the protocols they use for it. The doctors at SIRM are some of the best out there. I would trust them. They learn certain things from Dr. Sher and he has been doing IVF for longer than any doctor in the USA. He was trained by the two men who pioneered IVF. He has a lot of experience obviously. Dr, Sher implemented most of the IVF protocols that are used today. He implemented estrogen priming and the doctors at SIRM say its better when the priming is done in the follicular phase. This doesn't suppress women the way it can when its done in the luteal phase. He also says that bcp is only suppressive when its not overlapped with lupron. If you google " the use of birth control pills in IVF" his blog post on that issue should come up. He also says micro dose lupron protocols are terrible for DOR women. I am not saying that I think he is right or that he is the best doctor on the planet. But the man has over 30 years experience with IVF. I believe the first child born from ivf is only 33 years old. @mm29‌ may be able tell you about her experience using that protocol... I think she used it before? Well I'm glad you have had good consultations and I do wish you the best in your future whatever you decide.

ronniesgirl1981

Thanks for the love, support, and suggestions!!!

I went ahead and got poked for the autoimmune stuff today.  I figure that if we found something there it would make my decision much easier.

RunCC37

I'm constantly rooting for you, and know how frustrating it is when you search high and low and still don't get answers (or worse yet, find things you weren't looking for). Take your time to feel this out and do the work. Listen to your gut. I don't think you can go wrong either way you go. Both sound good, just different. Keep us posted about the immune testing.

emmuffy

Just wanted to say I'm rooting for you! Also I've always found the quote in your siggy inspiring. Good luck with your decision making and treatment

mm29

I, unfortunately, have tried most protocols used for those with DOR. The S.IRM agonist/antagonist EPP, traditional EPP with clomid, and testosterone priming protocol with HGH and clomid.

Out of all the protocols I have tried I responded the best with S.irms protocol, I tried both 600 IU and also 750 IU. Both times I yielded 2 eggs, one of the cycles only 1 of the 2 eggs were mature, the other, both were mature. I truly believe there is something to their protocol. I think we would have found success there had we been aware of DH's balanced translocation. Which we found was way worse than expected when we did a DE cycle and only had 1 pgd normal embie out of 15 embryo.

The traditional EPP, my follicle stopped growing mid-cycle, and my E2 fell, so I was cancelled. Many women find success with this protocol, but it just wasn't for me.

This cycle I did testosterone priming with clomid, and HGH. SIRM does not believe in this protocol, it is their opinion that testosterone affects the quality of the egg. This for me does not seem to be the case. I yielded one egg, which fertilized normally with donor sperm via ICSI. This protocol is supposed to recruit more antrial follicles, my AFC was the best it's ever been which was 3. I ended up with a dominate follicle, so only one was retrieved. Today I learned from our day 3 embryologist report it's an 8 cell with no fragmentation.

We are embryo banking and transferring after our third retrieval. I will be asking my current RE if I can go back to S.IRMS EPP, in hopes of yielding 2 eggs each with my two remaining IVFs.

I think you will find success at SIRM. I understand why they do not report their stats to SART. What I have learned in the process is that the stats can be misleading, in that there are clinics that PGD test most embryos and will not transfer unless the patient has normal embryos. If there is no transfer, it does not count as a failed cycle, therefore improving their stats.

Good Luck with your decision moving forward. I wish you all the luck in the world!

Grateful&Thankful

Grateful&Thankful said:

***PAIF

Glad to hear you were able to get some new opinions/fresh ideas. Obviously everyone responds to stims differently, but when I made "weird" decisions, my embryos looked better. I have a maturation problem on top of my DOR & I still haven't been able to correct the maturation issue 100% but my embryo quality improved DRAMATICALLY. We cut out about 80-90 % of the menopur & only used half a vial of it after 3/4 days of stims. We chose to kick up the gonal f instead. We used anywhere from 600 - 500 of gonal f at the beginning & then dialed down at the end. We also did long lupron protocols instead of EPP or MDL. LLP is usually unheard of for DOR patients but for some reason it worked best for me. So basically, you just never know what's going to work until you try it but I just wish it didn't have to be such a big gamble-esp financially. My first RE told me I'd never make it to ER without using at least 150-300 units of menopur. He was so sure of himself & confident but I ended up getting better embryos using way less menopur. ART is an art and the opinions on protocol differ wildly. Sometimes out of the box works. I know it's a hard decision & I wish you lots of luck with whatever you choose. 

Sorry, I also wanted to mention that I cycled at S.I.R.M. & they are responsible for this pregnancy. 

LilyHarper

No experience with EPP (which is what again?) but personally, I'm pro-people thinking outside the box (within reason). I find it a bit bizarre that we're diagnosed with something, respond differently than expected, but the response is to continue with a similar treatment, or something that has worked for others with the same general diagnosis. Hope I don't offend anyone with this, but my feeling has been, if I'm responding abnormally with my abnormality...perhaps it's time someone tried something different than the norm? The only thing that made me a little nervous for you with Dr. P was the not needing to see you until day 9, but maybe that's because I tend to respond way faster than I should. And btw, hi again.