IVF with PGD #7

Hey they collected 4 eggs ��3 were icsi and 2 fertilized now it's day 3 and I'm waiting anxiously for 3 day update

Oooh good luck!
That cycle seemed to take ages!
Hope your feeling well.

waiting for day 5 update!

FX Lu!

Not great news 2 of embryos have lost cells not sure what that means only one is an early blast and might be tested tomorrow morning won't know till then then wait some more for pgd results
How u hoing

Oh poo Lu. Well I'll be praying you get good news!

In good... Wondering where everyone else is?!?!

None made it to even test......shattered

Oh Lu. :( I'm so so so incredibly sorry. My heart is breaking for you :(

Take the time you need then come back and let us (me?) know how your doing.

xoxo

Hi there!

I'm new here, we are just starting the process of doing PGD IVF...

We already have a 3.5yo son who has inherited an X-Linked condition from me (i.e. I am a carrier but he is affected). We are doing PGD IVF to try and avoid the condition in our second child.

We've seen the Fertility Specialist and Genetist and also had our nurses and counsellor appt's with Genea. Next step is an appointment with the PGD Scientist before they start developing the genetic test for our family. So I guess we are still 2-3 months away from actually beginning IVF. We're still wrapping our heads around the science, and all the decisions we may have to make along the way.

In our case the specific gene causing the condition has not yet been identified, but they have narrowed it down to a small section of the X chromosome and identifying markers. Because of this we've been given a 95% chance of correctly identifying an affected embyro but not its not guaranteed.

There is still one thing I'm unclear on though (it may be come clear at our scientist appointment - I will certainly be asking the question there). Because we have an X-Linked condition, embryos have 3 outcomes : Affected (male, 25% chance), Carrier (female, 25% chance) or Unaffected (either, 50% chance). Obviously our hope is for unaffected embryos. However if we don't get any unaffected embryos I'm unsure whether we will have the option of using embryos which are carriers? And whether we would want to or not? Its been mentioned that it might not be our decision as it might against Genea policy to transfer an embryo which is a Carrier?

Does anyone else have experience in this sort of scenario? Any advice on what other kinds of questions I should ask the scientist?

Thanks!

Hi Redmonkey!

I'm also with Genea and I was allowed to use carriers, we didn't end up using one but we were allowed and still have one frozen with them.

Our situations are very similar, I also carry a X linked disease altho we were fortunate enough to know alot about it due to it being in my family for generations and diagnosed when by brother, now 27, was 6 months old. All my grandmothers brothers died as children but they never knew why. We are so lucky to live in this age of medical miracles, doing pgd was the best decision we ever made.

Do you mind me asking the effects of your sons condition?

Try not to get hung up on the 95% thing. Think of it as their 'get out of jail free card'. It's pretty much to cover their butts so they can't be sued if they do ever get it wrong.
I severely questioned them after our 3rd cycle when we had 7/7 unaffected. I accused them of getting it wrong as it was just to hard to believe but he basically said trust me it's right. As in, we don't make mistakes :b

As for the scientist appointment I would advise that you write down your questions and make sure you get answers you understand. Some of them tend to forget we don't understand science talk! It's like talking to Temperance Brennan from Bones LOL!

Considering our similar conditions and the fact that we are with the same clinic feel free to ask me ANY questions :D

Hi WeeMansMummy,

Thanks for the response!

My son's condition is not life threatening so doesn't sound as severe as your scenario ... basically the nerves in his feet and hands deteriorate causing muscle wasting, pain and loss of function (not unlike Muscular Dystrophy I guess?). Its a degenerative condition that progresses at a different rate for everyone so its hard to know what will happen. Supposedly it most commonly shows up in adolesence but my son showed symptoms at his 3month checkup. He is 3.5 and can walk but can not jump, run or climb stairs yet. He may end up in a wheelchair. I worry that the early onset might be a sign of a more severe condition.

If we had another child with the same condition, it wouldn't be the end of the world... but I look at my son who is a beautiful, gorgeous little boy who struggles and will live with pain and progressively worsening disability for the rest of his life and I know that if I could take away that burden I would in a heartbeat! Hence us going down the PGD IVF route for the next child.

Its good to hear that you would be allowed to use your carrier embryo! I guess I hope that option is available to us, I will definitely be getting to the bottom of it at our scientist appt. I'm quickly becoming fluent in the terminology and scientist speak (I love Bones btw!). Its amazing that you got 7 unaffected embryos - I'm crossing my fingers I'm so lucky :-)

Thanks again for sharing with me!

I would assume that you would be able to transfer carrier embryos if that was your choice. In your situation, if I only had carrier embryos available I would probably use them because I figure if our science is this fantastic in this day and age that we can test for these things and avoid having affected babies, then who knows how far things may have progressed by the time your carrier child decides to have children :)

Best of luck with everything! I thought the IVF/PGD process was going to be really scary and daunting (and for some it is), but I found it much easier than I expected it to be.

Hi wee mans mummy... Hope your well!!!! How old is your little one now???

I'm doing ok was very hard after the last cycle .....but will cycle again soon... I have been doing accupuncture weekly and have been taking dhea fingers crossed for more eggies ,,,,


Hi and welcome red monkey

I wish you all the very best for your cycle.....
I have done four iVf pgd cycles the first of which was successful and I'm very lucky to have a 2 year old little boy
We did the pgd to scene for neurofibromatosis it's a genetic contition that I have.... In my situation you either have it Or not no carriers as such....Soni can't help you with that question

I will tell you that they are really great at genea ,,,,,


Anyway please feel free to ask any questions about cycling testing etc etc
It's a journey and it's great to have people eto share it with that understand......

Lu xxx

Hey Lu! We are great thanks :) Wyatt is 9 months and getting very cheeky!

I have the same view on the carrier thing as Mylitta. By the time they have kids technology should be so advanced it won't be as hard for them :)
There is no way I ever thought I could do anything like pgd so things can only get better!

Hope you all had a wonderful Christmas!
xoxo

removed thread for privacy....

Hey bright future!
Welcome to this thread
I wish u all the best on your journey!

Afm I'm off tomorrow am to have first by and pick up fsh for my new cycle!!!
Fingers crossed!

How is every one else!???

Welcome BF! We traveled to Sydney also, from central qld!

Good luck Lu!!!!!

xo

Hi Lu & wee mans mummy, thanks to you both for the welcomes!!

Looks like you ladies have had a long road too!!

I am looking forward to finally getting started, it is long, slow and difficult isn't it!

We haven't told anyone we know we are doing the PDG, so we went to fill in our forms last night with all the witness spots and we were a bit stumped! Anyway got a girl at the local chemist to do thm for us and will post them off today.

Lu - fingers crossed especially for you on this new cycle!! Do you do anything special leading up? I am *trying* to lose a bit of weight and get generally healthier - the more eggs the better right when some don't fert, then some are affected, might not leave us with many!!

Have a great day. :p

Try fresh royal jelly. It's tastes like rotting oranges but is thought to improve egg quality :D
I really think it helped me.

Mmmmm rotting oranges! ;)

Thanks for that WeeMansMummy, I'll do some research! How much dosage did you take?

I checked with FS about COQ10 and that is fine, I'm taking 200 mg of that and I have to say it is helping my health generally too.

Hi went out and bought my self some royal jelly!!!!
How much do u take???
Bf....Here is my cycle summary

CYCLE 1 August 2008
age: 28
drugs: lucrin ten units puragon 150 or 175 but I h ad an overvstim slightly
10 eggs
6 fert
2 embryos tested
1 with nf 1 with out
1 with out was transferred and we are so very lucky to have a beautiful healthy 2 year old son!

CYCLE 2 October 2010
Age: 30
Drugs: lucrin puragon 175
6 eggs collected
4 Embryos Biobsied
All four with *NF 1 gene
No transfer

CYCLE 3 June 2011
Age:31
Drugs: 175, 225, 250 ,300
6 eggs collected
2 Embryos Biobsied
Both with NF 1 gene
No transfere


CYCLE 4
November 2011
Age: 31
Drugs: lucrin and puragon 300 all the way through
3 or 4 eggs collected
3 fert
None lasted to test
No transfer

Cycle 5 January 2012
New short cycle
Age:32
Drugs Puragon 225 (smaller dose)and I think ovadrill after a certain amount of days
New trials
Weekly acupuncture 10 week lead up, dhea captules 3x 25mg day and now royal jelly
Fingers crossed!!!

Hope this helps bf all the best Hun .....
How is everyone traveling ???
Lu
Xxx

Wee mans mummy : did u ask the nurses or doc b4 taking the jelly?? I'm worried about taking it during stims maybe should ask???? Or should have taken it b4 stim ing what did u do?

Ohh too confused....

Yeah my FS said she didn't believe it would help but at worst I'd have nice shiny hair! Rofl. Dr's are very sceptical about natural therapies and would never commit to saying yep this will help.
The only adverse effect would be possible allergy to just keep that in mind the first time.
Did it come with a little white spoon! I just had one scoop a day before and during the cycle up until epu.
It was a friend who recommended it to me, she is a nurse and got pg her first cycle plus all her eggs were great quality :)

Thank wee mans mummy.... Called nuts said it's fine but no Chinese herbs Yey I'm quite excited about all the new stuff I'm trying!!!!!

Off to eat some royal jelly!

By for now

Let me know what you think, it's so gross! I used to hold my nose, put it to the back and skull water to swallow it!

Wmm: it's very gross!! I put a bit on my tongue to taste it and test for alergy.....and eewww
So I took half a teaspoon out it at the back of my throat and swallowed I then search for something to take the taste away!!! Olives!!!! Popped two in and it was great!
Also just wondering is their a wired feeling u get after you take it????like um relaxed??was wired ....
Anyway how much did u take?? A day??
How is everyone else?

Hmmm not that I recall, but if you feel relaxed that's awesome!
I think I took whatever it said on the pot, like one or half of one of those wee white spoons.

Hi all!

Lu thanks for sharing your cycles, you have had quite a rollercoaster! Fingers crossed for this cycle for you, I'll be watching! Have you started jabbing yet?

WMM it sounds like this is the real jelly you took, not the tablets? I am guessing the tablets are not as strong / fresh / effective??

I'm going ok, just hoping that our PGD work up is more like the 8 weeks than the 12 weeks... I can't wait to get started, I would so much love a 2012 baby!!

Yep the fresh stuff not tabs :)

Hi ....
I'm on day 5 of the FSh snd nust started the oragultron I can't spell it but it's the ovulation blocker usually I take the lucrin first then the FSh but glad to be doing this short cycle !!
I go for bloods scanss and Accupuncture on friday
Fingers crossed!!!

Bf: I hope it goes quick for u!!!

Wmm : when we're u thinking of going again??

Short cycles are the bomb! Sooooo much better than down reg cycles but holy poop that orgalutran in pricey hay!

Ummmm.... Might do a FET this year. We are going to the UK at some point and I don't want to go pregnant. Will also be moving again so need to settle in to another new town.
DH would have already done a fet if it was up to him!

WMM a trip overseas sounds lovely.

Lu how are you feeling? My dose isplanned to be 200 puregon and I am a bit scared cos they keep saying "oh gee that's a high dose" and the plan is to freeze all... Everyone is different though huh!! That's like the mantra of IVF - everyone is different!!

xx

Wmm: yes an overseas trip would be great !!!!!how many frozen embys have u got left?? I would love a few extra however i will be ever so lucky to get one good one"...
Bf: I'm feeling crappy actully :( I don't know what it is I seem to get cold like systems at the start of the last three cycles.....however this being the worst I thing my dh passed in his lovely bug to me as well but feeling much better now.....
I'm getting hot flushes crazy!!
Hey I'm not an expert on numbers but 200 is avg I went up to 300!! Now I'm at225 cN I ask who is saying it's a high dose? Nurses?

You mentioned your with genea right and did they encourage you to freeze all embys b4 testing and do another cycle do the Same etc....???? so there is more embys to test and less cost??? As they have not offered that to me???
Wmm: I didnt have to paynforthe orgAlutran .... They just gave it to me......when I did the other cycle I have to get the lucrin from the chemist $300 later!!!! And only $30 bucks back from the health fund was a joke!!! Did u have to pay for
the org?


Ps that royal jelly just gets worse lol
Anyway I'm excited and scared about my scan on Friday"!!!!!
Hope everyone is well
Lu xx

Hey Lu,

Can't wait to hear how you go at the scan on Friday. Fingers crossed for you. Sorry you've got a cold, that is weird that it happens when you're stimming!!

Yep I am with Genea and from the history of the threads I think we have the same FS. I am definitely no expert, but I think as it will be my first cycle and I have quite a lot of follies naturally they are expecting lots of eggs from this dose. I don't know - maybe they're just going for trial and error with me cos it is the first time...

Do you know your follie number?

Yep I think they plan is they will test all the embies fresh and then just freeze the goodies so we will know how many we have on ice, I can have a break of a cycle or two then transfer. God I can't wait.

Hope everyone else is well. xx

What???? So bummin! I payed $900 for my orgalutran each cycle :(
I have 6 on ice- 5 healthy 1 carrier.
Sux to be sick during your cycle. FX for good numbers on Friday!

BF- why do you need a break between the cycle and transfer? I haven't come across that before. But it's been over a year and a half for me so maybe they changed more than just their name ;)

Hey WMM,

They are planning to stim me to the max but then by having a period in between everything goes back to normal (i.e. I wont overstim) and my lining will be better for a transfer... apparently... remember all this is from the mouth of one who hasn't even had one cycle yet so I don't really know what I'm talking about!!! hehehe!! ;)

Lu thinking of you today and hoping you have a great result on your scan. :pray:

Ahh ok, I over stimmed my first cycle. It's the worst thing I've ever been thru, and I only had a reasonably mild case compared to some.

Good luck Lu! Will be stalking for news.

Hi ladies great numbers .... Well for me they were
I had 7 on the right side and 4 on the left
That's double what I had last time!!!!
Must be a combination of the acupuncture, dhea and royal jelly and the short cycle!

But I'm feeling really really sick think I'm a little over stim t better lethal last night,.....
Wmm I did o er stim mild with my first cycle and yes soooo awful!!!!!

Thanks bf for the good wishes!

Anyway of for more blood and scan on Monday. Then hopefully a trigger soon!, and collect the eggies


Justbso happy there are more than last time!

Awesome news Lu!!!
Shame about being unwell :(
The may freeze any good ones you get until you feel better.

Great numbers Lu!!! Let us know how you go today - hoping there will be even more!!!