Posts Tagged ‘options’

What seems to work best for which poor responders and women over 40?

Thursday, June 3rd, 2010

This is one of those areas where we’d hope the empirical literature would be able to tell us what works for whom and under what conditions. But unfortunately poor responders and women over 40 – and particularly poor responders over 40 – are a relatively small group and rather neglected in the research (JMHO). So, what can we draw on instead?

This isn’t particularly scientific, but if you look at some of the research that’s been conducted over the years and combine this with informal sources such as the Over 40 High FSH Board‘s Timeline post (click here or search for “timeline” to find the latest) and also the high FSH google stats page, and also based on what I observed (IVF successes and failures) over many years on those high FSH boards, here’s what I concluded:

  1. There didn’t seem to be any pattern about whether the flare protocol, the antagonist protocol, or Mini IVF worked best – it’s basically a crap shoot. You just have to try them and see.
  2. The high stim success cases (live births) were generally women under 40 with a lot of antral follicles. The few over 40 exceptions tended to have higher AFCs (>5).
  3. The VAST majority of over 40 IVF success cases were low stim. [Lots of natural conceptions too, but of course there are many more people ttc naturally than with IVF, so it’s hard to infer whether, say, low stim IVF is more or less effective per cycle than ttc naturally – High FSH specialist Dr. Jerome Check thinks IVF gives high FSHers 2.5 times better odds for that cycle cf ttc naturally in your late 30s and early 40s.]
  4. Often on high stims you can get more follicles and sometimes more eggs retrieved, but the number of embryos generally seemed to be the same from either high or low stim (I’m excluding natural and boost protocols from low stim here). In other words, on high stims you often get more empty follies and/or lower fert rates.
  5. Those of us over 40 gals who’ve tried both high and low stim have quite often seen a difference in eyeballable embryo quality – just one example, but check out my high and low stim embie pics and see for yourself

So … based on what I’ve seen, my conclusions for poor responders/high FSHers/low AMHers were:

  • Under 40 and with OK AFC –> give medium-high stims a try first (say, 450-600IU)
  • Over 40 but a pretty decent AFC (say, consistently >5) OR under 40 with a low AFC –> try medium stims first (225-375IU)
  • Over 40 with a low AFC and FSH not through the roof –> try low stim (75-150IU)
  • Really excessively high FSH or a system that goes wacky with drugs –> go natural (BD or IVF) or try a ‘boost’ cycle (start natural, add tiny 75IU boost IF needed based on monitoring)

Not very scientific, but FWIW, that’s what I concluded in the end (after starting medium/high stim at age 40 and eventually listening to my wise board buddies and Jerome Check – and trying low stim).

Please note that this post is directed at couples and women who do NOT at this point want to consider donor eggs, but want to try and get a handle on what might be the best approach to try with their own eggs.

Other posts of potential interest:

How do we know when to move on?

Friday, April 9th, 2010

“Moving on” can mean a lot of different things:

  • stopping IUI or IVF and switching to ttc naturally and/or with alternative medicine
  • opting for donor egg IVF (or donor sperm IUI or IVF) instead of trying more with your own eggs (or sperm)
  • trying with donor embryos (these are frozen embryos left over from other couples’ IVF cycles who have had success and have finished building their families)
  • pursuing adoption (domestic or international) or foster parenting
  • deciding to live child-free or (in the case of secondary infertility) with just the one(s) you have

But how do we know when it’s time to move on to the next option? And, when should we (and when should we NOT) be making those choices?

It might help if I share a bit of my story from the very lowest points of my ttc journey.

I think one of the worst parts of my whole ttc journey was right when we found out that our miracle natural conception after 2 years ttc#2 was in fact, at 7 weeks, a blighted ovum. At that point I was almost 42, where they say your fertility falls off a cliff, and I really felt like this pregnancy was my last chance slipping through my fingers. I had six failed IVFs under my belt, 2 cancelled for poor response, 4 that had gone to egg collection, a total of 9 embies transferred, no leftover frosties, 4-5 other natural conceptions that were chem pgs (mostly) and now this 7-week miscarriage.

Every BFN and especially every loss was a major low point for me. Not only did life/reality totally suck; estrogen levels at the end of a failed cycle or failed pregnancy are in freefall and that makes anyone feel really really crappy. So, the one thing I learned is NO negative decision making while climbing out of the vortex. But once out …

It’s a very personal decision about how much more of this you can take. The costs are high on every level (physical, emotional, financial), and you lose major chunks of your life clawing through this stuff. Your career suffers, relationships with friends and family suffer, and if you have one or more children already there’s this awful feeling that you are losing precious time with them while you are consumed with cycles and blood tests and scans and peesticks and phantom pregnancy symptoms and researching next options. And infecting them with the sadness and depression that comes with a long struggle with infertility.

As one of my NZ board buddies pointed out, it is really important to sit down with your partner regularly through the ttc process (and with a good counsellor, if you choose) and ask yourselves some very difficult questions such as:

  • What does my partner want, what do I want, how do we resolve things if there are different goals? (this can change at different stages of the process)
  • What’s the impact of this treatment (or yet another treatment) on our relationship? How do we stay strong together as a couple?
  • What’s the impact on our lives if we don’t have children after [insert number of] IVF/treatments? What’s the vision for our future without children?
  • [and I’d add one for the secondary IFers] What’s the impact of this treatment (or yet another treatment) on any child(ren) we have? What is the cost to their quality of life of having their parents going through this gruelling process? How well are we ensuring they get the love and nurturing they need while we try for a sibling? How long/often can we keep trying before the negative impact on our child(ren) makes it no longer worth it?

The financial drain is very stressful on top of everything else. It was hard to take on much work while having to avoid travel during only partially predictable cycle dates, so income can be down anyway. We were lucky to get some help from family and the bank manager, but everyone has a limit to how far they can stretch before they are really in trouble. My philosophy was that I could make money after menopause but not eggs – and that any resulting child would cost far more over a lifetime than a few IVFs. I needed to get to 50 with no more regrets, whichever way it went. So we kept on, making the decision after each cycle – at least a couple of weeks after the BFN or the D&C (no sooner).

For me, the decision about whether to move on was all about whether I thought we were out of plausible ideas and just spinning on some hamster wheel. But even after 6 IVFs I still felt like we had ideas to try that we hadn’t tried before. Thankfully we had a specialist who would work with us to try anything plausible. And go figure, after no success in 2 years age 40 to 42+ (and high FSH to boot), IVF#7 at age 42.3 gave us not just one baby but fraternal twins.

Unfortunately, though, success isn’t going to be the outcome for everyone who persists. I knew I had to be at peace with eventual failure. I wanted to look back after menopause and know that we had tried everything that we could, and that we did it without sacrificing our relationship with the one we were already so lucky to have (and who we were told would never happen either).

Early on in the process, after my first IVF at age 40 was unceremoniously cancelled for ZERO response, my first thought was “Oh well, that protocol (microdose flare) didn’t work; now there’s really only one other for me to try (antagonist). If that’s a zero response too, then that’s that for IVF. Simple.” If that had happened, the choice would have been very clear to me – ditch the IVF and try naturally with acupuncture, herbs and supplements (we’d 99% decided against the other family building options already; my tubes were fine and we had only mild MFI). In some ways that scenario felt like a relief because it was unambiguous and the treatment less taxing on many levels. But on IVF#2 I did actually GET a response, though not a great one. From then it was a case of hunting for the Goldilocks (just right) protocol, and giving up on IVF once it was clear we’d exhausted all the plausible ideas (or our emotional capacity for going through the process).

It’s a very personal decision for each person or couple about when to move on and which options you would consider. My advice (and I know a lot of people would advise the exact opposite) would be to NOT decide in advance how many cycles you’ll do or whether a particular cycle is definitely your last shot at anything – it puts a LOT of stress on the so-called “last” cycle.

Another very good read on this topic is Janey’s post on the Fertility NZ blog. Janey’s been through the IVF mill and is reaching the end of the journey, but unfortunately without a baby in her arms. Here are some snippets from her very real reflections …

We are all at such individual, personal stages in our journey with creating our own families. This could be trying IVF for the first time, or the sixth because you’re a “poor responder” – how dare they label us that – or having had a miscarriage, or having realised that it’s time to accept our shape of ‘family’ might include dogs, step children, and a trips to India. I’m at the later end of the spectrum. It’s immense.

I no longer want to hear about people getting pregnant, or want to support another friend through IVF. It’s too heartbreaking. The lovely people at Fertility NZ have compassionately identified this, and are saying, “That’s okay”. How nice to feel valid, in a journey that is anything but valid or fair.

=> Read Janey’s whole post and the 30+ comments from women in the same boat.

As another board buddy said, “Getting on the infertility treadmill is easy – its when to hop off that is the problem.” So true.

When and how should I seek a second opinion?

Thursday, October 15th, 2009

Suppose you had a friend who was grappling with a cancer diagnosis and kept wondering whether his/her specialist had really considered all the possible treatment angles that might work. Suppose he or she had been receiving some treatment but there hadn’t really been any sign of progress. What would you advise? Probably a second opinion, right?

For some unknown reason, fertility patients seem to struggle with this notion that it’s somehow disloyal to seek a second opinion. Yes, it is awkward. But actually, it’s just good common sense if there’s any little voice inside your head saying “maybe there’s a better way …”  I know several women/couples who have switched specialist within the same clinic and have really agonised over how they are going to “break up with” their initial specialist. But the reality is this happens all the time, and people need to find the fit that’s right for them. My local clinic (FAA) actually makes that transition incredibly smooth and most of the drs are perfectly happy when it happens. [Actually, some may be relieved about getting rid of a “difficult” patient! ;)]

Even if you’re not actually switching specialists, it’s perfectly reasonable to seek out a second opinion if you want to. If you’re publicly funded you may have to pay for the second opinion consult, but that’s money well spent if it’ll give you peace of mind and/or some good ideas that can get you closer to building the family you want.

Remember, just as in any other profession, each individual specialist has certain diagnoses and treatments that they have a particular interest in and more experience in treating. Some gravitate toward the more straightforward cases (early 30s, no tubes, standard protocol, easy success); some specialise in particular issues (endometriosis, PCOS, thyroid problems); some are really passionate about taking on the really challenging cases (women over 40, poor responders, egg quality problems). It’s a good idea to ask around about who’s had success with cases like yours. And that’s a good place to start for a second opinion. Just think, women/couples in the States fly 5 hours from coast to coast seeking a second opinion; we are incredibly lucky that even the other end of the country isn’t that far away! And if travel is really a problem, you can often book a phone consult.

Over the years, one thing I’ve noticed is that the truly professional specialists I’ve spoken to have NO problem at all with my seeking a second opinion. They support my being proactive and are very happy to listen to any ideas I glean from those other consultations. They don’t let egos get in the way of my treatment. While working with my own specialist, I got a copy of all my notes and did a phone consult with a specialist in the States who’s considered the #1 go to guy for women with my particular diagnosis. My specialist in NZ was like nooooo problem – and was very open to the ideas I came back with. We did, of course, have a healthy debate about which of the ideas seemed to make the most sense in my case, but the main thing was that we had that discussion and we made some good decisions together about what to try next.

How do you know you should seek a second opinion?

Well, everyone’s different. For some people, it’s when they’ve just had a failed cycle, they can’t afford to do more than about one more, but the specialist is suggesting just going with the same again. For others, they’ve tried discussing other ideas with their specialist but feel like these aren’t being taken seriously or at least the reasons for not trying these things aren’t being adequately explained. For me, it was feeling like we’d already discussed and tried all the ideas we could think of together, so I needed a fresh perspective, a new source of ideas. Whatever the situation, if there’s a little voice in your head wondering whether you and your specialist have adequately explored all the possibilities, that’s a sign you might want a second opinion. It could just end up confirming what your current specialist is telling you, in which case that’s also useful because it eliminates doubts that you’re doing the right things.

If you think you might want to get a second opinion on your case, here’s what to do:

  1. Get a copy of your notes from the clinic so you know exactly what protocols you have tried already, any testing that’s been done, how you responded to treatment (including E2 levels, follicle sizes, the embryologist’s ratings of embryo quality, etc).
  2. If you can, make a 1-2-page bullet point summary of your history and any testing. This makes it a LOT easier for the new dr to get up to speed quickly on where you are at.
  3. Ask around (e.g. on the Everybody BB’s Infertility forum) to find out which drs at which clinics have had success with your particular diagnosis and history.
  4. Call that dr’s clinic and speak with his/her receptionist; ask for an in-person or phone appointment; ask where and how to send your summary/notes/file.
  5. You don’t have to formally tell your current specialist that you’re seeking a second opinion, but you’ll probably end up informing his/her nurse or receptionist when you request a copy of your file/notes. It’s a courtesy to mention it, but if it’s causing you anxiety then don’t force yourself to. The specialist will understand.
  6. If you are doing a consultation with someone who works at another clinic from your ‘home’ clinic and if you like what they are suggesting as a new plan, discuss with them whether it would be feasible/advisable to (a) ask your current specialist to follow a new protocol; (b) cycle at your local clinic but with the new specialist either calling the shots or providing advice to your own specialist; (c) travelling and doing the whole cycle at the new clinic; or (d) doing egg collection and transfer at the new clinic, but monitoring (ultrasound and bloodwork) locally. All of these options have been done around the country at one time or another.
  7. Don’t worry too much about having to persuade your current specialist to try something new – quite often the specialists will just get in touch with each other and work out how best to work together. Ask your ‘second opinion’ specialist what he/she thinks is the best way to handle this. The politics and the details of this shouldn’t be your problem – you are going through enough stress already!
  8. Don’t worry too much about the ‘disloyalty’ issue either. You have the right to expect specialists (and any healthcare provider, for that matter) to be professional about second opinions and NOT to make you feel guilty about seeking one out. If you find someone is not being particularly professional about it, that tells you more about them than it does about how you handled it. Your priority is to get a baby/family out of this, and their priority should be to help you achieve that dream. The specialists won’t be a part of your life forever, but your babies will!

Questions to ask a prospective specialist

Tuesday, September 22nd, 2009

Before committing to working with a particular specialist, it’s a good idea to ask them a few questions to get a feel for their approach to treating patients like you.

All too often I have talked with women/couples who have gone through their first consult with a specialist and simply assumed that whatever treatment plan they are prescribed is somehow the “right answer,” that there’s nothing to question or compare. In reality, specialists do vary quite substantially in how they approach the treatment of couples with a particular diagnosis – even specialists working in the same clinic. You need to use your first consultation to get a sense of whether the specialist’s approach makes sense and feels right for you.

The following questions might help get the conversation started:

  1. What kinds of protocols do you use for couples of our age and with our diagnosis; which would you try first and why, and what would you suggest next if we didn’t do well on that?
  2. What successes have you had with cases like ours in recent years? Please describe a couple of recent cases you can recall.
  3. What is the most innovative or non-standard protocol you have used with a couple of a similar age and diagnosis to us? [You want to get a sense of whether they use a one-size-fits-all approach or whether they are prepared to think outside the box.]
  4. What is the minimum number of follicles you require in order to proceed with egg collection? Is there a minimum E2 (estrogen level) too? To what extent will we be consulted about whether to proceed with egg collection if numbers of follicles or E2 levels are lower than the norm? [You don’t want a dr/clinic that just makes unilateral decisions and dishes out instructions without discussion.]
  5. Under what other conditions would you cancel a cycle on us?
  6. What would you see as the main risks/difficult hurdles for a couple like us as we go through an IVF cycle?
  7. How many [IVF, IUI] cycles would you let us try if we (a) have been cancelled for various reasons (e.g. poor response) and/or (b) still haven’t attained a pregnancy after several tries?
  8. What other clinics or specialists in New Zealand do you know of who have experience with cases like ours? Is there anyone else you would suggest we speak with before deciding where to cycle?
  9. What is the cost of a cycle? Will we be eligible for public funding? If so, when? How long is the waiting list once we become eligible? Is there anything we can do to speed up our eligibility or waiting time, such as further diagnostic testing?
  10. Who does the ultrasound monitoring at this clinic? Who does the egg collection and embryo transfer procedures? Will I get my own specialist for these procedures? What if my egg collection or embryo transfer days fall on the weekends?
  11. If we have questions or problems (including when the clinic is closed), who will we call? [The reason to ask this is that at some clinics, you will never get to speak to a dr on the phone. The questions are often fielded by nurses (or answerphones!!) who will sometimes – but not always – ask the dr. But at some clinics, you are given your specialist’s cell phone number in case something urgent comes up after hours or when you can’t get through to a nurse who can answer your question promptly.]
  12. Do you believe that immune issues play a role in IVF success, and do you test for them in advance? If not, when would you test for such things? After how many failed cycles? How do you treat immune issues if and when they are diagnosed?
  13. [For high FSH/low AMH/poor responder gals …] Are you open to high, medium and low stim protocols for cases like ours, or will you insist that we do (say) medium stims every cycle?
  14. [Also for high FSH/low AMH/poor responder gals …] Is there a maximum FSH cutoff in order to be able to start a cycle? If so, how high is it, and can I take suppression beforehand to bring FSH down below the cutoff?

Before going into your first consultation, it is well worth learning as much as you can about the basics of IVF and the main protocols. The first consult always rushes past in a blur, but it helps a lot if you have just a little knowledge to get you started and a good list of questions to make sure you find out what you need to know.

If you’re nervous about the first consult, consider taking a support person with you, e.g. someone who’s been through the process before, or someone who knows a bit about it.

If you’d like some time to process the consult and think about the answers, and/or speak with another specialist to allow a comparison, don’t fee pressured to commit on the spot to starting a cycle. Tell the specialist you’d like a few days to chew it all over and will contact them or their nurse to let them know what you decide.