IVF with PGD

WTH - I am keeping everything crossed for you that this little one stays put.:pray:

Buliej - I had my EPU on the Friday and 3 were biopsied on the Tuesday morning, 2 out of the 3 tested positive to Tri 15. My geneticist said that it was quite common, but I have read from the ladies info to the contrary. If you can do PGD than I would recommend it, we paid $2100 through Monash on the Gold Coast and yes it is all out of pocket. Remember though all your out of pocket expenses over $1500 can be claimed back on your tax and you get 20c in the $ back. It's something. Yes, Tri 15 ultimately end in miscarriage so better not to have one implanted, get your hopes up and then loose it. I was pretty crushed when I found out I didn't have a little girl to implant but quickly realised that it was for the best knowing what the outcome would have been.

Hang in there, there is a lot of information to digest and process.

Hope all you lovely ladies had a great Tuesday.

This is all very interesting - in a scary way! I'm a bit surprised that the message from my OB is that this abnormality is unlikely to happen again, yet it seems that with so many of us over 40's it is actually rather likely to recur. I think I've already made up my mind to have the PGD. I'd rather wait [a few?] cycles as to know that I have a good one rather than go through a miscarriage again - or think that everything is ok up until 12-15 weeks and get a bad amnio result.

Lisa K - you refer to your geneticist - not your OB or FS - I assume this means you are seeing someone who specializes in this?? When did you get referred to a geneticist (was it at your insistence)? What involvement do have with the geneticist - as I would have thought it's really the lab that's doing the testing and communicating the results via your FS/clinic.

Thank you everyone for all this information...

Buliej: Really sorry to hear about your T15 result. Can't really help, I am doing PGD but because of a dominant genetic condition which could result in a very sick baby. I was asking the scientist about the normal screen as I thought it would be good to do as it could avoid a CVS and possible miscarriage later on, but they can't do it for me as they already have to check for my gene. Think Lisa's advice makes sense, you really don't want to have to go through that again, we seemed to have a lot of ladies with T15 results lately so maybe it's not as uncommon as they say.

Thank You WTH you're really sweet. Hope you feeling okay with the waiting game

Cuddlepie: Hope you get a good result from your BT today.

Meredith: Hope all is well with you.

Lisa: Good to hear from you, hope you're feeling okay.

AFM Things are pretty dark here, may join you WTH with getting my first cycle cancelled.

Had my first ultrasound today and they only found one follicle (3mm) and possibly another one but too hard to call. My only hope is that the other ovary where they thought there wasn't a follicle may not have been my ovary as they had real trouble finding them at all.

The bad thing about this as well is that the nurse said if they have trouble finding ovaries any EPU would be very painful (don't mind pain at the moment just want to get there!).

Now have to wait for BT result later today (to add insult to injury they need three tries to find me vene) and will hopefully be able to talk to FS as well. The nurse said they may increase the dosage and do another Ultrasound and BT on Friday to see if things have improved but agreed with me that if there are no follicles it will probably get cancelled. Just really hope that if that happens my FS comes up with a plan so that I can try again soon. Anyway nobody ever promised me that this would be easy.:(

Sara

Sara69 - I hope they can do a pick-up - it would be so frustrating to have this cycle canceled...

What is a "normal screen"?

For those of you with trisomy 13, based on my googling it seems that in most cases this is caused by spontaneous change in the egg, however there are cases where it's actually inherited (meaning one of the parents is a carrier of this abnormality - usually the woman). Before proceeding to PGD, did you get tested to see if you are a carrier or did you either 1- assume you were and/or 2 - decide that it doesn't matter whether you are a carrier or it's a spontaneous change in chromosomes - that you want to do PGD anyway? I'm trying to get a sense of why my OB would say it would be rare to have trisomy 13 appear again when it sounds like with women of a certain age it's not so rare. I would guess that if you are a carrier it's not so rare but if you are not, maybe it's more unusual to have it repeat...or maybe not.

I also have a call into my FS to discuss - but you ladies have a wealth of knowledge worth mining.

Sara,
I had one ovary that was really difficult to image - and hurt every time my FS tried to poke around with the ultrasound probe. He did my EPU under general anaesthetic, so he could have a good poke around that ovary. The recovery was simple, and I was only sore for a day or so afterwards.

Sara, I am sorry that things not looking as it should be, I am hoping that you Friday's u/s will be showing a lot different picutre. Praying for your b/t this afternoon showing good numbers on stimulation and you get a chance to discuss this with your FS. Hugs!

Sorry Buliej, I didn't want to confuse you I think they call it aneuploidy screening cycle, my clinic has some info which might help, it's listed under genetic disorders sivf.com.au. It's probably worthwhile to talk to a geneticists if you can, it was very helpful to talk to the one at my clinic.

Thank you Knm, that is really good to know.

Sara

Thank you Cuddlepie, you're really sweet.

Buliej - We first saw a Geneticist privately after we had to terminate our son. He suggested that IVF with PGD would be the best hope for us until we knew for certain what caused his condition. Because I delivered Brendan at the Royal Womens Hospital in Brisbane I had to have an appointment with their Genetics department in order to have the public system send his and my DNA to France for the specific X Linked Hydrocephalus testing which looks for the L1CAM. I contacted the doctor I saw there to let her know about the Tri15 results so she could put them in my file. It was also her who ordered full blood tests with Karotyping for DH and I, so we can have a full picture of what we are dealing with.

It was the Monash lab in Melbourne who did the testing, but she is involved with the results.

LisaK - thanks so much for sharing that information.

I'm in Melbourne with Melb IVF and I noticed that on their website they talk about PGD testing and go into specifics they can test for - they do not mention anything to do with chromosome 15. So I decided to take a look at what Monash's website says and they do specifically mention PGD testing for problems associated with chromosome 15. I'm wondering whether Melb IVF even offers this (and if not, why the difference)?

Also, Monash IVF (and Melb IVF for all their PGD procedures) say that they do PGD testing on day 3. Yet, I took a look at Sydney IVF's website and they do the PGD testing on day 5 and they explain it as follows: SIVF wait until the embryos have reached the optimum fifth day of development when they can have a hundred or more cells, and then remove three to four at a time. Other clinics conduct the biopsy at Day 3 of the embryos' development when they consist of just six to eight cells, and only a single cell is removed, greatly reducing the number of opportunities for success. [note - I'm not sure what they mean by "greatly reducing the number of opportunities for success - do they mean that doing the retrieval of cells when the embryo is only six cells there is a greater chance of damaging the embryo'?] By waiting until embryos have reached the blastocyst stage, Sydney IVF scientists can select cells from the trophectoderm, the part of the embryo that will go on to form the placenta. The inner cell mass, the part that will become the baby, is not touched.

This seems to be either a big difference in philosophy which goes on in all fields of Medicine - OR - a big difference in capabilities if it is usually thought that it is better to do PGD on day 5...but the Melb clinics for some reason can't or lose more between day 3 - day 5 than SIVF.

I'm really sorry for bombarding this thread with questions - but the way I make decisions is to gather as much info as possible. We are willing to travel and/or change clinics to increase our success...

Speaking really broadly - SIVF generally does PGD for miscarriage reasons. They have put a lot of effort into getting really good at day 5 biopsy, which they need to because they need more than one cell for the tests they do.

Monash IVF used to do "develop to order" PGD for genetic disorders. More recently they seem to be specialising in more standard PGD for a range of genetic problems.

Melb IVF specialise in PGD for genetic disorders, including test development for single gene disorders.

This field is changing so fast, and what you see is a result of where the clinics have chosen to put their research capabilities and to focus their own learning.

Call Melb IVF and ask to talk to their PGD coordinator - she'll give you their info and then you can think about your options.

When I went to SIVF first time round five years ago they also did the biopsy on day 3. While their explanantion why they now wait till day 5 makes sense to me I wouldn't discount other clinics doing it differently, they may have their reasons.

Waiting till day 5 may mean that you have less embryos to test so it has disadvantages especially if you don't have many follicles to start with.

Sara

I think that MIVF and MonIVF have worked really hard to get reliable day 3 tests for genetic disorders, so they don't need to grow to day 5. The plus to this is that the earlier an individual "good" embryo is transferred, the more likely it is to grow.

There are 2 advantages to day 5 transfer - number 1 is that having to grow those 2 days is a bit like an endurance test for embryos, so if you have a few strong embryos and a few weaker ones (which are more likely to miscarry) then the strong ones can be sorted. Number 2 advantage is that lots of tests for trisomies can be carried out, because lots of cells are available for testing. Disadvantage is that some embryos that don't make it to day 5 would have made it if they were in a womb rather than a culture (on the other hand there is not at present any way of telling which ones these were).

You also have to realise that this is a competitive business as well. It is possible that if MIVF and MonIVF knew all that SIVF know about growing blasts they would do more day 5 transfers, and conversely, if SIVF were as good at single gene test development as MIVF and MonIVF they might do more day 3 ones. The clinics are not all entirely friendly and sharing all their techniques freely with each other - technique development is very expensive. They also have to offer the services that make the best use of the talents of their scientists (and in each case this will be a relatively small team of people).

All very interesting.

In my fantasy medical land all clinics would share so that no matter where you went, you received "the best" as such existed at the time - or at least all of the options in their best form so that you could chose as I'm sure there's no one sure way. It seems to me that given the number of people seeking IVF and the natural geographic spread of people there would be enough "customers" (aka patients) to keep all the clinics busy and profitable...and that the government would be interested in this being the case as well, as they are paying for much of this via medicare.

Buliej - I had three cells tested for 8 different chromosonal errors. So one of the other reasons why Day 5 is sometimes preferred over Day 3 (where they can only remove one cell) is that they feel they are getting a better "map" of the overall embryo. It is possible to have one normal cell in an abnormal embryo. Also, if I had done PGD on Day 3 I would have had four embryos (well, actually three decent ones) to biopsy. Yet only one made it to day 5. I guess from a business POV it would have been a waste to test the others (though personally I would have liked to have known if any others were chromosonally normal and maybe they just were a bit low on energy). On the other hand, I agree with what KMN said about transfering earlier - you cannot replicate the human body.

KMN - just wanna say thanks for dropping in and sharing information. You are a wealth of knowledge for us gals and have a good way of explaining things.

Lisa K - "hi" hon. Thanks for thinking of me :D

Cuddlepie - Good luck with your BT result

Sara - I am sorry about your US :hug: It is great they are giving you a followup US and they may be increasing your dose. Worse case scenario might be you are giving the option of doing an OI (like I was last month). It does mean no PGD, but, given I had a "normal" embryo this month, the FSH could improve the quality and it might be a good one. That is my theory. We are thinking of trying naturally next month if no BFP but I am going to have to ask my FS for some estrogen-support... I hope you have a better BT result this afternoon :pray:

Meredith - yay - started Orgulatron. You have reached the half-way mark :clap: It's not that bad at all (just expensive - looking forward to going to my Healthfund and feeling like I have won Tattslotto). Your estrogen level is amazing! Mine was 4,800 on the day of the morning of the trigger. I think your first PGD cycle is showing great promise :dance:

AFM - 11 DPO (5 DPT). Finding it tricky to analyse just how I am going, as I know some of my symptoms are from the luteal support. Having some persistant mild AF-like cramps today which I have read can either AF is coming (due this weekend) or that I am PG. Well, that just about covers all options :rolleyes: Having a bit of excess saliva, too. Not panicing as much as I was a couple of days ago. Have already booked my next FS appointment the day after my BT (just in case) and it looks like one of the Kent St FS will be able to look after me when I start my next cycle late December (when things are closed down here). I know it is not over yet but I really like to have an action plan...

Unfortunately BT result wasn't any better than Monday still less than 100 which confirms the Ultrasound. MY FSH level has been increased to 375 and they want to do another BT and Ultrasound on Friday to see if things are improving. The nurse said they haven't given up hope yet - but also agreed that realistically this is now only testing out what happens to have a better idea what to do next time.

WTH - Hope the cramps mean you're pregnant. Very much understand what you mean with action plan, just called my FS and asked her assistant to make sure that I can talk to her on Friday (they are normally closed Fridays) in case the cycle gets cancelled, it would be the worst thing go into a weekend without knowing what the next step is. Trying naturally unfortunately is not an option for me, as 50% of my eggs have the bad gene, can't risk that, really wouldn't survive another abortion.

Cuddlepie: Hope your BT went better than mine.

Sara

Sara - just wanted to remind you that because I was understimulated last month they let me start again the following month. Also, some ladies who understimulate have issues because they are oversuppressed by the Lucrin. So that is why I got to try the different protocol with Orgalutron. It seems to be recommended to women with lower egg numbers but is thought to improve quality

WTH xx