IVF with PGD #4

[bebedream]

Hi ladies

May I joing this thread?

After my 2nd consecutive heartbreaking miscarriage (Hcg levels were high and promising) :cry, our FS suggested that we next try pre-implantation genetic screening (PGS) and test our remaining 7 blasts (and if none are chromosomally normal, do a fresh EPU).

I really don't know much about PGS or PGD.

On the one hand I'd do anything to avoid another M/C, but on the other I'm not too sure we can afford the cost of PDS testing, especially since there are no guarantees we will be any more successful with it (I did a little bit of research on it and not many FS seem sold on the idea).

I'm with Dr Hart at FSWA in Perth.

I'm completely lost as to what to do next and any info/comment would be greatly appreciated.

Thank you

[Motherhood here i come!]

Evening Ladies,

As promised, the results following my first US and third BT today.

So, after an anxious wait today to hear from the nurses, they finally called mid this afternoon .

Ok bear in mind that I only started Puregon Injections on the evening of the 22nd Aug so technically when the BT and US was conducted it was day 6.5 . So what I saw this morning was a 5mm uterus lining, 8 Follicles on the right ovary at approx 8mm and then 10 Follicles on the left ovary with the largest at 8mm. BT results, they have upped my Puregon from 200 to 225 (Was 175 when I first started on the 22.08.09) Have another US and BT organised for next Tues.

Nurse explained to myself that the US showed the base and that everything is progressing as it should be. She also explained that at Tues US its hoped that it will show what number of Follicles we can possibly expect at EPU. Its also hoped that they will have grown more by then too and its hoped that we can possibly predict when EPU will be carried out. So now its just FX and that those little follicles grow baby grow!!!!

Nurse also explained that the BT showed that my estrogen levels have increased, not sure on the exact numbers there on that one and again, on Tues, we hope that this too will increase.

Not much else to report. All DH and I can do now is .

Hope everyone is well. TIme to relax over the weekend hey

[ferrals5]

Onja-hoping your ET goe's well today.

Bebedream-sorry to welcome you under these circumstances i'm with Sydney IVF and they seem real optimistic as our fertility is not the issue it all come's down to a number's game how may follicle's you have to how many egg's you get to how many fertilise to how many make it to day 5 to be tested and finally how many are uneffected so yes the odd's are not fantastic but we are giving it a go before the medicare rebate is changed in jan then we have no choice but to go back to try natrually as it will be to expensive but i hope it work's 1st go or at least we can fit one more cycle in before jan i'm just waiting on the phone call that our probe is ready to start.
I will say it all made more sense to me after i spoke to the PGD nurse and the scientist sorry i'm not of much help as i am new to this as well.

Motherhood-everything seem's to be comming along i think the nurse's comment's should have put your mind at ease i hope it all continue's to go smoothly for you reading what you girl's go through is giving me insight to what i will have to go through.

AFM-still waiting for my phone call.

[Onja]

Hey all!

So posting the updates - on Friday finally got the call about the gene testing. Out of the 6 that fertilised - four had the NF gene but good news is that two were clear and progressing nicely! So we had the transfer today (with one) and seemed to go okay. We got to see the embryo implant which was fun.

Motherhood - sounds like everything is going along well

Bebedream - Hello I am doing PGD for a known gene defect. I am not sure how it works in your situation or if you can have some kind of gene analysis... ask lots, research lots and also have you ever tried acupuncture or homeopathy? There is a lot of research to support that alternative medicine in conjunction with IVF can increase your chances

[bebedream]

Hi all

Thanks for the info Ferral. Because I have had 2 consecutive M/Cs, my FS told me to be prepared for the fact that all my 7 remaining blasts could be in some way abnormal...this really freaked me out! As everything is fairly recent (had a D & C this week) and I'm seeing my FS in 3 weeks to discuss the next step, including PGD/PGS, I hope to feel more confident about it after the appointment. Why do you have to wait another 2 months to start your cycle?

Onja - I think my FS wants me to do PGS to isolate the chromosomes which may be invloved in M/Cs. This is still a bit fuzzy for me at this stage. I have tried to research PGD, in particular people's experiences with it but it seems that only a minority of women are using it. I will now become one of those 'mystical PDG' IVF patients
I have used acupuncture for my last 2 transfers and it seems to have helped with implantation as I got pregnant both time. I don't think acupuncture can do much to help with any chromosome abnormality though
This is great news to have 2 embies without the NF gene! Wishing all the best for the 2WW.

Cheers

[Onja]

Bebedream: Sorry (duh) I might have been getting confused that they were thinking 'chromosone abnormality' as to why you have miscarried (yeah it would be good if acupuncture helped in that regard)

I know how you feel there is little information out there and the only people I have ever met who are doing PGD are in these forums in the last few weeks. I started with Monash IVF where the first thing they did is all the genetic testing - although I knew that I had a gene abnormality I still had to get all the testing to confirm this and then to start to develop a test as there was no known test for this abnormality.

My first step was to seek out a PGD clinic (may have already been arranged through your FS?) and speak to a geneticist and a genetic counsellor - I believe this is a legal component of PGD in Australia and it definitely helped me to feel much more informed and supported about the whole experience. They will probably start doing testing to establish what and where the abnormality is and hopefully if a test is already developed it won't take too long at all.

Good luck

[ferrals5]

Bebedream-when you start on PGD they have to develope a test (probe) to test your embryo's for the gene/chromosone fault first, in my case they did the whole DNA sequencing to isolate the gene for SLO( smith lemlio opitz syndrome) that was done after abbi's autopsy at a lab in Adelaide (6 week's eprox) then the report was sent to the IVF geneticist and PGD scientist we sent off our DNA week's ago to get thing's moving along while waiting for the DNA the scientist then have my DH and me and abbi's gene it is identified so then they send off to America for a few test kit's so to speak so they see if it will pick up the fault and all the fragment' around that gene that give's a 99% accuracy and if those test's don't work they have to send off for more and that can take time every one is told 8-12 week's to develope the probe as we got all the testing done before we even went to see SIVF i that knocked some time off.The scientist had found our marker's and everything is ready to go they are just waiting on the test's from America and if the 1st one's work we could get a phone call any day now but i am saying 8 week's in case they have to order a few different test's and the shipping time from the US is 2-3 week's so if what the scientist is saying it wont be long i just don't want to get my hope's up sorry to rave on i hope that all help's and to the other girl's please correct me if i'm not quite accurate in my term's ect or if i have been missinformed some how.

[Where there's hope]

Hi ladies

May I joing this thread?

After my 2nd consecutive heartbreaking miscarriage (Hcg levels were high and promising) :cry, our FS suggested that we next try pre-implantation genetic screening (PGS) and test our remaining 7 blasts (and if none are chromosomally normal, do a fresh EPU).

I really don't know much about PGS or PGD.

On the one hand I'd do anything to avoid another M/C, but on the other I'm not too sure we can afford the cost of PDS testing, especially since there are no guarantees we will be any more successful with it (I did a little bit of research on it and not many FS seem sold on the idea).

I'm with Dr Hart at FSWA in Perth.

I'm completely lost as to what to do next and any info/comment would be greatly appreciated.

Thank you

Bebedream

Like you, I suffered some MC's (four). Mine were naturally conceived and two were proven to be chromosonally abnormal. In desperation we turned to PGD to improve our odds. Along the way, I learned from SIVF literature that one in three blasts are abnormal - and that is in a young healthy couple. So going along this train of thought, it does not mean that your seven remaining blasts are all likely to be abnormal (unless you have a genetic situation, etc). There is a very good chance that some or most of your seven frosties will be just fine It is an excellent idea to test them and see if you can transfer any, before forking out more for a new IVF cycle. Ironically in my case, I had a total of four blasts tested over two cycles and all were "normal" (our thinking is the IVF process may have helped with my egg quality). My second transfer was successful. If, however, you have them tested and they are consistently abnormal, I recommend you and your partner have a blood test to see if there is an inherited problem. I had this chromosonal test performed twice (basic and advanced) and the BT results took 3 weeks.

HTH and good luck
WTH

[ferrals5]

Just a quick update i got a call from my pgd scientist today (Don leigh) our test is almost done he think's we will be ready to start in 4 week's as AF is due in 2 week's then we should be able to start in oct he said we could start now but would like this one other test to be 99.99% sure so finger's crossed it all goe's to plan.

[Loula]

Hello ladies, i often leark here but have not posted befor, some of you may know our journey?

My DH and i have just finished our 14 IVF cycle which once again ended in a missed MC requiring another D&C, which my FS has assured me will be sent for testing.

We are looking at our 4th EPU and will be requesting that we use PGD or inverstigating CGH (comparative Genomic Hybridization) which i believe is very new and at this time only offered in US (please correct me if i am wrong).

I really dont know much about PGD and how it will assist us as i believe the problem lies in my uterus and me not being able to carry a child, not with the quality of our embies. but after so many cycles it is something we are looking towards to assist us further, esp it we are to go down the route of surrogacy, as this is expensive and we want to only put back the best to achieve a pg and live baby outcome.

i hope all your dreams come true

x

[melbel]

As far as I know CGH is a British development.......thats the one where they test all 23 sets yeah? If so it was a combined British/US research and I was not aware it had been approved for the commercial market yet....have seen trials and I know London Hospital had applied late laste year for approval to commercialise it but I hadn't seen any outcome from that application as yet.....

will be back with more info if I find it.....

[Loula]

thanks mel

[Onja]

Ferrals four weeks thats awesome!! Congratulations

[bebedream]

Hi Ladies

Thank you all for your replies and update

Ferral - I had no idea that PDG was so involved and complex (with the formluation of the tests and sending your DNA to the USA etc.)!!! This would explain the extra cost and delays! Great to hear that you'll be able to start in 4 weeks

Onja - I'm in little old Perth andI don't think there is a "PGD clinic" as such here. My clinic is quite small (that's why I chose it originally as I didn't want to feel like a number). The head embryologist is supposed to be the best in WA and is the one in charge of PGD. I don't think my clinic (or any other clinic in WA) have a geneticist. As suggested by "There is Hope", I think what my FS has in mind at this stage is the basic chromosomes testing. I don't know if we have any particular genetic issues yet but if we had, it seems we should probably relocate to Melbourne? Monash IVF seems to be the leader in this field? I really hope I don't have to go that far (literally and figuratively!).

I copied this quote from my clinic's website:

"In these instances we can assess the normality of eight chromosomes (those most likely to be identified in miscarriage material) and implant an embryo which is normal for these."

I think in our case, we will test those 8 chromosomes and then go from there.

Loula - I'm so sorry about your M/Cs I "only" had 2 but I have this constant state of sadness which I carry with me wherever I go and whatever I do.
Re CGH, I found an article this month saying that it is now offered by Sydney IVF! There's nothing on their website but it is worth checking it out. Here is a quick extract in case the link below doesn't work. If the "simple" 8 chromosomes test doesn't work for us, we would seriously consider switching to Sydney IVF (this would mean quitting my job and flying in and out of Sydney for treatment but if this treatment is as revolutionary as it is supposed to be!)

[I]"WOMEN will fall pregnant sooner and have healthier babies under a new IVF procedure which has arrived in Australia.

From next month, Sydney IVF will offer new technology that analyses all 23 pairs of chromosomes to eliminate any embryos which may be genetically faulty.

The new method CGH - comparative genome hybridisation - will help infertile couples who have recurrent miscarriages or repeatedly failed attempts at IVF.

Sydney IVF medical director Dr Mark Bowman yesterday said the procedure should improve pregnancy rates and produce healthier babies, eliminating genetic diseases such as Down syndrome."

A medical miracle for healthier IVF babies | The Courier-Mail

A medical miracle for healthier IVF babies | The Courier-Mail

I'm back at work tomorrow (took the week off to deal with my M/C, including the D & C), so I might be a bit quiet until the week-end (my brain is usually fried when I come back from the office!).

X

[bebedream]

Hi Ladies

Thank you all for your replies and update

Ferral - I had no idea that PDG was so involved and complex (with the formluation of the tests and sending your DNA to the USA etc.)!!! This would explain the extra cost and delays! Great to hear that you'll be able to start in 4 weeks

Onja - I'm in little old Perth andI don't think there is a "PGD clinic" as such here. My clinic is quite small (that's why I chose it originally as I didn't want to feel like a number). The head embryologist is supposed to be the best in WA and is the one in charge of PGD. I don't think my clinic (or any other clinic in WA) have a geneticist. As suggested by "There is Hope", I think what my FS has in mind at this stage is the basic chromosomes testing. I don't know if we have any particular genetic issues yet but if we had, it seems we should probably relocate to Melbourne? Monash IVF seems to be the leader in this field? I really hope I don't have to go that far (literally and figuratively!).

I copied this quote from my clinic's website:

"In these instances we can assess the normality of eight chromosomes (those most likely to be identified in miscarriage material) and implant an embryo which is normal for these."

I think in our case, we will test those 8 chromosomes and then go from there.

Loula - I'm so sorry about your M/Cs I "only" had 2 but I have this constant state of sadness which I carry with me wherever I go and whatever I do.
Re CGH, I found an article this month saying that it is now offered by Sydney IVF! There's nothing on their website but it is worth checking it out. Here is a quick extract in case the link below doesn't work. If the "simple" 8 chromosomes test doesn't work for us, we would seriously consider switching to Sydney IVF (this would mean quitting my job and flying in and out of Sydney for treatment but if this treatment is as revolutionary as it is supposed to be!)

[I]"WOMEN will fall pregnant sooner and have healthier babies under a new IVF procedure which has arrived in Australia.

From next month, Sydney IVF will offer new technology that analyses all 23 pairs of chromosomes to eliminate any embryos which may be genetically faulty.

The new method CGH - comparative genome hybridisation - will help infertile couples who have recurrent miscarriages or repeatedly failed attempts at IVF.

Sydney IVF medical director Dr Mark Bowman yesterday said the procedure should improve pregnancy rates and produce healthier babies, eliminating genetic diseases such as Down syndrome."

A medical miracle for healthier IVF babies | The Courier-Mail

I'm back at work tomorrow (took the week off to deal with my M/C, including the D & C), so I might be a bit quiet until the week-end (my brain is usually fried when I come back from the office!).

X

[bebedream]

Hi Ladies

Thank you all for your replies and update

Ferral - I had no idea that PDG was so involved and complex (with the formluation of the tests and sending your DNA to the USA etc.)!!! This would explain the extra cost and delays! Great to hear that you'll be able to start in 4 weeks

Onja - I'm in little old Perth andI don't think there is a "PGD clinic" as such here. My clinic is quite small (that's why I chose it originally as I didn't want to feel like a number). The head embryologist is supposed to be the best in WA and is the one in charge of PGD. I don't think my clinic (or any other clinic in WA) have a geneticist. As suggested by "There is Hope", I think what my FS has in mind at this stage is the basic chromosomes testing. I don't know if we have any particular genetic issues yet but if we had, it seems we should probably relocate to Melbourne? Monash IVF seems to be the leader in this field? I really hope I don't have to go that far (literally and figuratively!).

I copied this quote from my clinic's website:

"In these instances we can assess the normality of eight chromosomes (those most likely to be identified in miscarriage material) and implant an embryo which is normal for these."

I think in our case, we will test those 8 chromosomes and then go from there.

Loula - I'm so sorry about your M/Cs I "only" had 2 but I have this constant state of sadness which I carry with me wherever I go and whatever I do.
Re CGH, I found an article this month saying that it is now offered by Sydney IVF! There's nothing on their website but it is worth checking it out. Here is a quick extract in case the link below doesn't work. If the "simple" 8 chromosomes test doesn't work for us, we would seriously consider switching to Sydney IVF (this would mean quitting my job and flying in and out of Sydney for treatment but if this treatment is as revolutionary as it is supposed to be!)

[I]"[I]WOMEN will fall pregnant sooner and have healthier babies under a new IVF procedure which has arrived in Australia.

From next month, Sydney IVF will offer new technology that analyses all 23 pairs of chromosomes to eliminate any embryos which may be genetically faulty.

The new method CGH - comparative genome hybridisation - will help infertile couples who have recurrent miscarriages or repeatedly failed attempts at IVF.

I'm back at work tomorrow (took the week off to deal with my M/C, including the D & C), so I might be a bit quiet until the week-end (my brain is usually fried when I come back from the office!).

[HotI]

Bebedream

I have a friend who lives in Perth. A lot of the genetic counselling in WA is done by telephone or teleconference (through the computer so you can see each other). If this is something you are interested in now, or if the testing finds something, the clinic or a main hospital should be able to organise it for you.

take care,

Kate

[Bengal]

Hi Ladies

Thank you all for your replies and update

Ferral - I had no idea that PDG was so involved and complex (with the formluation of the tests and sending your DNA to the USA etc.)!!! This would explain the extra cost and delays! Great to hear that you'll be able to start in 4 weeks

Onja - I'm in little old Perth andI don't think there is a "PGD clinic" as such here. My clinic is quite small (that's why I chose it originally as I didn't want to feel like a number). The head embryologist is supposed to be the best in WA and is the one in charge of PGD. I don't think my clinic (or any other clinic in WA) have a geneticist. As suggested by "There is Hope", I think what my FS has in mind at this stage is the basic chromosomes testing. I don't know if we have any particular genetic issues yet but if we had, it seems we should probably relocate to Melbourne? Monash IVF seems to be the leader in this field? I really hope I don't have to go that far (literally and figuratively!).

I copied this quote from my clinic's website:

"In these instances we can assess the normality of eight chromosomes (those most likely to be identified in miscarriage material) and implant an embryo which is normal for these."

I think in our case, we will test those 8 chromosomes and then go from there.

Loula - I'm so sorry about your M/Cs I "only" had 2 but I have this constant state of sadness which I carry with me wherever I go and whatever I do.
Re CGH, I found an article this month saying that it is now offered by Sydney IVF! There's nothing on their website but it is worth checking it out. Here is a quick extract in case the link below doesn't work. If the "simple" 8 chromosomes test doesn't work for us, we would seriously consider switching to Sydney IVF (this would mean quitting my job and flying in and out of Sydney for treatment but if this treatment is as revolutionary as it is supposed to be!)

[I]"[I]WOMEN will fall pregnant sooner and have healthier babies under a new IVF procedure which has arrived in Australia.

From next month, Sydney IVF will offer new technology that analyses all 23 pairs of chromosomes to eliminate any embryos which may be genetically faulty.

The new method CGH - comparative genome hybridisation - will help infertile couples who have recurrent miscarriages or repeatedly failed attempts at IVF.

I'm back at work tomorrow (took the week off to deal with my M/C, including the D & C), so I might be a bit quiet until the week-end (my brain is usually fried when I come back from the office!).

Bebedream - That is wonderful news that SIVF will be commencing CGH - Great results in America, I am going to tell my Melbourne FS he better pull his socks up and get that testing started here ..