CARE Fertility Bulletin Board

MollyImms · 21 Mar 2009

Hello Everyone,

I'm 43 and have just had my 3rd unsuccessful IVF cycle. We had array CGH this time which showed that we only had one normal egg (out of 8 tested) which unfortunately didn't fertilise. I was just wondering whether there are any older ladies out there who have had success with CGH. I would love to hear how you got on.

Molly
x

Helen W · 27 Jun 2002

Hi Molly

Just wanted to say hi and hope you are OK following your chest infection?

Funnily enough I've not been well either for a couple of weeks. Like you, I felt exhausted and drained for a week after what can only be described as the collapse of that last cycle. Then Max got a high temperature and was sick the following week. DH and I then seemed to catch a version of his bug, we've both had headaches, aching eyes, tiredness...today is the first day I've felt better.

I agree that the stress plays havoc with your health. Glad to hear you've had a review with George and hope you found it helpful. I'm afraid I can't bring myself to go anywhere near Care, I really do think we'll call it a day now as far as anymore treatment cycles go. We count ourselves very lucky indeed to have our lovely little boy.

I do hope you get some good positive stories in response to your question. I haven't heard anything encouraging about CGH at all.

Best wishes

Helen
xxx

MollyImms · 21 Mar 2009

Hi Helen,

Lovely to hear from you.

I'm much better now thanks. Sorry to hear that you and your family have been unwell too. My DH has also been unwell with a chest infection. I think it must have something to do with the stress of what we've all been through. You keep going while you're actually having the treatment, and then after it you just kind of "collapse".

I don't blame you for calling it a day with IVF. If we had a child already we probably would too. We feel a little backed into a corner because we're starting to head towards the "too old" category for adoption, but at the same time would still like to try for our own child. I am a little worried that we'll end up with neither.

Even if you don't go back to CARE for a review, don't forget to get a refund for the ET!

Hope you have a lovely Easter and get some time to recuperate.

Molly
x

Helen W · 27 Jun 2002

Hello again Molly Very Happy

I think as long as you have the strength and determination (and your pockets are deep enough Sad

) to keep going then you should. I think it's an excellent plan to consider adoption too but as regards feeling too old, I thought the age limits had been relaxed now??

Did you discuss doing Array CGH again on your next cycle with George, and do you think you will? I can see the benefits of it alright but I'm wondering why so few people seem to be actually doing it? Maybe we've put them off!

I really do hope you achieve your dream in the not-too-distant future. Things may look a little bleak at the moment but situations can and do turn around very quickly.

Wishing you a peaceful and happy Easter - with plenty of chocolate to munch!

lots of love

Helen Very Happy

xxx

Helen W · 27 Jun 2002

PS - Don't worry I got my £325 for none-transfer back pretty quick!

H
xxx

MollyImms · 21 Mar 2009

Hi again,

Ah good you got your money back - that's great! Every little helps. Hope you're spoiling your DS with lots of choccie eggs this Easter Smile

Yes I think we will have CGH again. I think I'd rather know whether we have any good embryos than sit there and wait not knowing - especially when there's every chance that the embryo is not viable. To be honest, I don't think that many people are aware of CGH - and those that are may be put off by the cost I guess. I was hoping that someone with a positive story may have replied to my posting - I know they exist as George told me they did - but so far no-one has. Oh well.

Something else that George mentioned is taking DHEA. Apparently it's routine in some clinics in the US to take this - it gives aging ovaries a bit of a boost. Well, my pot of capsules arrived today, so I'll give them a go. DH said he did some research and apparently a side effect can be mood swings..haha..well he better watch out then Smile

I hope you're feeling ok about everything and that you're enjoying life a bit more now. One thing about IVF I hate is that it does tend to dominate everything for me. I miss having a "normal" life.

Enjoy the long w/e!

Molly
x

Lori09 · 02 May 2009

Hi Molly,
I am 43 as well. I am about to try IVF with aCGH for the first time. I've never done IVF before but am anxious to try. I've done 4 IUI cycles to no avail. I will be traveling from the US, as it's not a process that they are doing in the US yet. I, too, am on the DHEA. I have been on it for about 8 months. I started taking it on my own after reseaching it's "possible" benefits. There is not enough evidence as to it's positive benefits yet, but the research that I did seemed positive enough to try. Doctors here are not very familiar with it and did not seem too keen on my taking it. I stopped taking it about 3 weeks before my consultation with George, just so I didn't have to get "scolded" by another doctor for taking it. He told me to get back on it right away. I was really surprised. Finally, a doctor that was willing to try it. The only side effect that I have had is pretty bad acne. I have read that it takes approx 4 months to kick in, but I don't that for sure. After 4 months though, my FSH went from 15 down to 6! So, who knows, it may boost your eggs!
I should be starting my protocol on June 20th. Any advice? Do you live locally?

Helen W · 27 Jun 2002

Hi Lori

Good luck with your cycle - very interested to hear you are taking DHEA. I'd never heard of it before til Molly mentioned it.

I doubt we will be doing another cycle but I would definitely try it if I was, and I suppose it's worth a try taking whilst trying naturally too?

I'm do admire you travelling all the way from the US for treatment - wow. However, you are doing absolutely the right thing in having a consultation with George. If anybody can get you pregnant he can!

I was successful on my 6th cycle at the age of 37, fourth fresh with immune drugs. He's definitely 'the man'.

Hello to you too Molly if you're looking in.

Best wishes to you both

Helen
xxx

Lori09 · 02 May 2009

Hi Helen,

Thank you for the encouragment. It's good to hear positive things about a doctor that you're traveling so far for.

6 IVF cycles?! Wow. How many of those were with CGH? It sounds like you have a child now through Care's process? I don't have any children yet, so I am really hoping it works.

Best wishes,
Lori

MollyImms · 21 Mar 2009

Hi Lori and Helen,

Lovely to hear from you.

Lori I wish you all the very best with your cycle. I think George is a really good consultant - I've had two previous cycles at other places and he and the CARE team were definitely the best I've experienced. We are hoping to have another cycle soon.

Yes George is very open minded which I think is great and he's always looking into new things that might be going on out there - DHEA being one of them. I started taking DHEA about 6 weeks ago but I'm a bit worried that I won't have been taking it long enough for our next cycle. The fact that your FSH has gone down by so much is fantastic. Hopefully that's a very good sign that positive things might be happening. Helen I'm sure it wouldn't do any harm if you're still trying naturally too! I haven't had any side-effects really but then maybe I haven't been taking it for long enough.

Did you have any of the immune tests that they offer at CARE Lori?

So you're starting in June. It's a long way to come from the US but I totally understand why you'll be doing it. Will you be staying in Nottingham? I live in Southeast London so it's a bit of a treck for me but not on the same scale as for you.

We were told to leave two AF cycles before we try again, so we could be starting around mid-June too. Could be the same time as you!

Bye for now.

Molly

Lori09 · 02 May 2009

Hi Molly & Helen,

I love that I have connected with you guys. You both have been through it before and I'm just trying to figure out what it's going to be like.

Here are a couple of good links on the DHEA. I don't believe it's quite the fountain of youth that the article implies, but I do truly believe that it has positive benefits for our biological timeclock.
http://www.cbsnews.com/video/watch/?id=4318538n
http://www.centerforhumanreprod.com/premature_ovaries.html

My understanding is that 7-Keto DHEA is better for you than just regular DHEA, although I was taking the regular DHEA for months before I discovered this. My self-prescribed dosage was 75mg/day. When George told me to get back on it, he said I could do 50mg/day, but I switch between 50-75mg/daily. On my first follicle count, I had 5 follicles, then averaged btwn 8-9 thereafter (all on IUI stimulation drugs). Yesterday, my Antral Follicle Count was 11 (without taking any stimulation drugs)! I don't know if this has anything to do with DHEA, or not, but I tend to think it's helping. You do want to make sure that you've had your mammograms though, because on the down side, if you happen to have breast cancer, it can speed up the growth process. They also say it can give you more energy and help you lose weight. Unfortunately, I haven't been lucky enough to have those last two side effects. Wink

If you are taking it without ever trying with some sort of an ovualtion induction again, then it may not help. Because although eggs may be growing in there, your body will naturally only release one, defeating your purpose of recruiting multiples. If you do think you may try again, then taking it now may be a good idea.

I have a couple of questions, if you can please try to help me with anything you know:
1) Is an Antral Follicle Count of 11 good? (At first I was excited, but now I'm not so sure.)
2) If you have 9-11 follicles before stimulation drugs, is it likely that there will be a boost in that number on the IVF stimulation drugs?
3) How often do you need to go to the clinic during the final stage leading up to Egg Retrieval? (I'm looking for a cute cottage near Nottingham to stay in while I'm there, but don't want to be too far if I have to go in daily.)
4) Molly- you said that you had to wait 2 months before trying again? Is this typical? I thought you could go right back to it, if it didn't work. (?)

And, yes, I had a whole series of immune tests done. Some of my results are still not back. I am still waiting for my karyotype results to return, and did not do the TH1:TH2, since this is ridiculously expensive in the US (hopefully that's not too important). All my results have come back in the ideal range, with the exception of the MTHFR test. I apparently tested positive for two copies of the C677T mutation. George has not discussed this with me yet, but it means that my body has trouble absorbing the folic acid. So, I'm really glad I had this test done, so he knows to add this into his protocol. Are there any specific tests that you all are aware of that have, or could, make a difference? I want to make sure I have all my bases covered, because I can't afford more than 2 tries at this.

Looking forward to hearing from you,
Lori Smile

MollyImms · 21 Mar 2009

Hi Lori,

Well it sounds as though you have everything pretty well covered.

Regarding your questions I'm certainly no expert but I would think that an antral follcile count of 11 is very good. I don't know though whether there will be a boost in that number after stimulation.

You won't need to go to the clinic for scans too much until you start stimulating. Then for about 10-14 days before egg collection you'll need to go in approximately every other day to every 3 days for a scan and blood test, depending on how well your follies are growing.

I think you can go pretty much straight into another cycle if it doesn't work. I have a friend who did that (not at CARE) - actually I think she left about a month before starting again, but George recommended we have a break just to get over it really - mentally and physically - as it was all a bit draining. Hopefully that won't be a concern for you and you'll have success straight away!

What made you decide to come to the UK for treatment?

Bye for now.

Molly

Lori09 · 02 May 2009

Hi Molly,

I'm coming to the UK, because they aren't doing the arrayCGH in the US yet. There is only one fertility clinic in the US (with multiple locations) that is doing the basic CGH, which is a 2-cycle process. This means in the first cycle you have the egg retrieval, embryo testing & embryos frozen. Then, you have to travel back again the following month for the actual transfer. They haven't mastered how to do it in a single cycle yet here, which seems like a lot of added stress & wasted time. I would have had to travel to either New York or California anyway, so visiting England for a better process seemed like the better bet. Plus, it's less expensive in the UK, than the US.

I am getting to have all my scans done here locally and am not scheduled to be in Nottingham until 10 days prior to egg retrieval. So I will likely be there for 12 days, hopefully visiting the Peak District and beautiful countryside in between appointments. : )

Do you have your dates yet?

Best Regards,
Lori

Roz · 07 Mar 2001

Would you mind if I lurk around here with you ladies? I'm looking to do my final, final ever cycle this summer and hoping to do Array CGH. I've posted a couple of times on other parts of this board to see if anyone has any success stories, but if they do they're not sharing!

If all goes to plan, I'll start down-regging at the end of June.

I'm so worried about starting again, especially as this will be our last go ... no pressure there then!

Roz x

Lori09 · 02 May 2009

Hi Roz,

How many times have you tried?

I can't give you a success story (yet) but I have done a lot of research on aCGH and I wouldn't even attempt an IVF without it at this stage. This will be my first attempt, and it sounds like a couple of us will be going through it at the same time. If all goes to plan, then I, too, will be down-regging around June 20th.

I can understand how you'd be nervous, but if you're going to try again, I think you're doing the right thing.

Lori

Roz · 07 Mar 2001

Hi Lori, not done aCGH yet as it's not been around that long over here, I last cycled in 2003 and things have changed a bit since then. Thanks for saying you think I'm doing the right thing, logic tells me the same, I just wish it had been around a bit longer and there was more of a history, but we're all different anyway aren't we and statistics don't always tell the full story.

It sounds like you've done your homework, I've been looking on IVFConnections bulletin board too and there's some really positive stories from people who have used the other method of CGH (where you do egg collection and replacement on another), which is giving me hope!

Let's hope we can all be there to support each other. I've found this board an invaluable support in the past and made a few good friends along the way.

All the best, Roz x

ski girl · 26 Jan 2009

Hi all,
Just wanted to say that iv done CGH recently. It sounds briliant and we wanted to try as it was probably our last attempt.We had all 5 of our eggs tested, but were told that not one of them gave any conclusive results. We had two put back anyway which resulted in a BFP, but i had an early miscarriage soon after. In my experience, CGH doesnt seem to be that reliable at the moment. I feel that as a new treatment, it needs more research.
It didnt help us at all ,but only served to add to what was a very stressfull treatment anyway. Also, i think the price of this test is unrealistic.We are seriously out of pocket, and are no nearer to knowing anything about my eggs. Anyone considering CGH should be aware of this possible scenario.

Lori09 · 02 May 2009

Hi Ski Girl,

Thanks for the info! What, exactly, does "inconclusive" mean, in this situation. If they are able to check all 23 chromosomes in the egg, what is it that leaves them without a conclusive result? This is the second time that I'm hearing about someone receiving "inconclusive results" and I'm just curious as to how common this is.

I'm traveling to England from the US for the process, simply because here it takes 2 cycles to complete what they do in 1 cycle in England, such as Roz was mentioning. Plus the cost is actually a few thousand dollars less in England for a more advanced program.
Anxious to hear any info you have.

Thanks,
Lori

ski girl · 26 Jan 2009

Hi Lori,

Its termed as "no signal", which basically means it is an indeterminate result, which meant to us that no eggs showed either abnormalities or were normal.They could not not tell us why. They also said that it was normal to occasionaly have one egg that gave indeterminate results. Unfortunately none of ours showed anything,which they said was unusual. For us, it wasnt worth the added stress of waiting and spending all that money that could of been better spent towards other treatment options. I wouldnt rule it out altogether if we were considering another treatment, but just feel that it is a hell of a lot of money, to get absolutely no information from it at all. Good Luck anyway.

MollyImms · 21 Mar 2009

Hello Ladies,

Also welcome to the thread to Roz and ski girl!

I just wanted to add a little bit to the CGH topic. On our last treatment, we had 11 eggs collected, 10 were mature and of those 6 fertilised. So, they sent the polar bodies from those 6 and 2 of the others that didn't fertilise, away to be tested with CGH. The results were that only one was normal and unfortunately that was one of the ones the didn't fertilise. Of the remainders, 5 were abnormal and the CGH was inconclusive for the other two.

I work in a lab studying cancer and some of my colleagues use the array CGH technique regularly. The only thing I would say about the price having seen how much the reagents and arrays cost - is that we're being charged a fairly reasonable price. These things cost an absolute fortune to buy and consequently I think £2000 for testing 8 eggs is actually not that bad. When I first enquired about the price I was expecting it to be alot more. I know it's a phenomenal amount of money for us to have to cough up - I could well do without it - but in terms of how much the reagents cost to buy, it is unfortunately, a reasonable price.

The other thing is, yes, occasionally the technique doesn't work, - and from my experience here in the lab - it's usually more to do with the starting material that you're testing, rather than the technique being temperamental. The two embryos that we had that gave no CGH result, looked lovely to start with and one was actually a grade 1! However, on day 3 they simply stopped growing so that was a strong indication that they weren't healthy inside even though they looked good on the outside. The embryologist also said that that gave them some idea as to why the CGH result was inconclusive for those two.

For me I simply wouldn't waste my time having another ivf cycle without CGH. When you get to my age - as the test result previously showed - most of the embryos will most likely be chromosomally abnormal, so we need to fish out the healthy ones provided that they do indeed exist. The embryologist told me that if we had had some of the abnormal ones put back on our last cycle, we may well have gotten implantation, but it would have undoubtedly resulted in a miscarriage later on, as the abnormalities were not compatible with life.

Anyway, those are just my thoughts.

In answer to Lori's question - I should be ready to start down-regging in about 5 weeks time, so I think that's around mid June.

Bye for now.

Molly

Lori09 · 02 May 2009

Hello All,

Molly - your response was very welcoming to read. I have read about it being used in cancer studies, but it's facinating that you're getting some first hand knowledge & experience. Also, do you feel that if you had done ICSI, then the one normal egg may have fertilized normally? Or did you do ICSI? (I just want to understand better so when I'm asked to make these decisions, I will be better informed.)

Ski girl- I'm really sorry you had the experience you did. I'm sure that was extremely hard news to hear. I think it's important to know the good and the bad of any process. At least now, I am prepared for the possibility of what may happen. Out of curiosity, did you have your process done at one of the CARE clinics?

Despite the issues that it may have, I still think CGH is the way to go. A friend of mine did a regular IVF (no CGH), had 14 eggs, 7 fertilized and 2 put back, with 5 frozen. She got pregnant, but miscarried. Out of those 7, she had a good chance of having a normal egg, but the 2 they picked were probably not the right ones. If she had done CGH, then they could have narrowed down the egg(s) that had the best chance as opposed to playing the crap shoot and just picking any 2. Unfortunately, they did not properly freeze the other 5, so those are no longer available. I'm sure many people wonder the same thing about their past IVFs..."what if the right one had been picked." I only have 1, maybe 2 shots at the most for this. I need to make sure that I'm giving myself the best chance possible, and I believe this is it.

**Also, I wrote down the wrong down-regging dates in a previous posting! I told you guys I was to start June 20th. I meant MAY 20th, which means I started yesterday. And now the fun begins! I will be in Nottingham from June 9th-22nd.

Wishing everyone well,
Lori

MollyImms · 21 Mar 2009

Hi Lori,

Just a quickie as am at work - we did have ICSI. Apparently with ICSI the fertilisation rate is about 60%. When I asked George he said that that is normal. They didn't know why though, but it's probably because the whole process is quite traumatic for the egg and not all of them make it through. So all in all, things weren't on our side that time. Here's hoping things will be better next time.

Wow - so you're already down-regging! I hope it goes really well for you. Have your sorted your accommodation out yet for when you're in Nottingham. Hope you're feeling ok!

Keep us posted! Smile

Molly
x

Roz · 07 Mar 2001

Wow Lori, you've already started! Glad you're going before me Wink

! Hope you have a safe journey over here x

Molly, your information has made me feel a little bit more positive about the whole CGH thing, been so confused about what to do - nearly chucked the whole thing in earlier this week.

I should be down-regging around last week in June. Are you ladies doing the Day 21 start for down regs? That's new on me, always started down reg on day 1 on my previous cycles. Really apprehensive about all the drugs too this time, wasn't so worried about it 6 years ago but since then I've read up a lot and realised knowledge isn't always a good thing Smile

All the best to you, Roz x

Lori09 · 02 May 2009

Yes, yes, it looks like I'm a whole month ahead. Wink

I'll do my best to keep you up as to how things are progressing.

And yes, I was put on a Cycle Day 21 protocol, too. So far, I'm only on the Synarel nasal spray. I'm not terribly fond of injections, so this was a great alternative. In a couple of weeks I'll start taking Gonal-F & Menapur injections daily. 2 injections a day! Kinda funny, saying I used to pass out at the sight of a needle. I still cannot give myself a injection, but at least now I stay conscience.

I did find a cottage to stay in. I will be staying in Matlock which is about 35 minutes away. I will be arriving to England by myself, then my husband will arrive 3 days later. So, if anyone has appts/scans in Nottingham on June 10th or 11th, then let me know! Saying that I will be in a far-away country, by myself, trying to learn to drive on the opposite side of the road, it would be nice to have someone to just have lunch with. : )

Molly-how do you manage your appts from London? Are you getting to do your scans locally and then just travel for the procedure?

Overall, I am nervous & excited. We're really lucky that we even have this option. It's an option women 1-2 years older than us, didn't even have. : )

Take care,
Lori

impossible · 29 May 2009

Hi, I m new here...We are thinking of doing an IVF later this year. How long should we stay at nottingham and at hospital?