Anyone doing FET/IVF in Jan 2013 till everyone's BFP (Everyone Welcome)

[alicatt]

Ali - 4800 is a lot of money but if you can get it down for the first month as low as possible then I'd be tempted to do that!! Did you get a toxicity report? My fs said that's the more telling info that they need...xx

Toxicity? I don't think so? Maybe?

I asked them about alternate options, and apparently there are 2 types of NK cells (or well 2 things that they can effect) and they are treated differently. The first is implantation failure (which is what I have) the other is repeat pregnancy loss (which is what you have - I think). So each issue is treated differently.

But yes, $4800 USD is a lot of money! An IVF cycle (without meds) is only $9k, so to have to spend $4800 a month for 4 months is rough.

I'm waiting for my FS's office to call me back to discuss further. I just don't know what to do!

 

[LilFooshFoosh]

From my understanding the transfusion kills off the parent cells so they aren't able to reproduce the nasty activated cells that attack our babies (this is why you need to do it 7-10 days before ET). If you reacted better to the IVIg, I think it makes total sense to use that the first month and then continue with Intralipids to just maintain the NKa level acheived with the IVIg.

I haven't actually done the testing because it costs more than doing the Intralipid transfusion. So my RE (to save me money and time) suggested we just try the Intralipids this cycle because of my chemical and the fact that it was my only successful implantation in 2 years. So, I did the transfusion and took Medrol (this is for the other immunological issue, like Everhopeful) to try to cover our bases.

 

[everhopeful]

Yes correct I suffer with repeat pregnancy loss. I have similar levels of NK cells to you but they were more concerned with my toxicity level which gives them a picture of just how aggressive.

For example the patient that saw my fs an hour before I did had a higher number of NK cells than me but her toxicity was only around the 7% whereas mine is around the 11% mark. Less cells but almost double as aggressive, in my case they chose steroids as they are better at targeting higher toxicity levels.

But like you said, we have different issues with our cells, might be worth asking what yours is though?

I started steroids 10 days before transfer to try reduce NK cells before embryo went in.

Could you do something similar with intralipids?

Xx

 

[alicatt]

I think that is the number I'm quoting? That my NK activation was 12.4% and we got it down to 8.3% with the IVIg but only 9.9% with intralipids. I will have to look at the lab report to verify.

I think I'm leaning towards doing the IVIg first and then following up with intralipids. I wonder if we could do a lesser dose of IVIg as a booster with intrapilids for the additional months?

I wish my FS office would call me so we could get this dealt with today. Apparently they don't seem to think that this is an issue that needs to be confirmed today. I'm like well if you want this done Friday they need time to order the meds and schedule the nurse. HELLO? Nurses don't grow on trees Nor does money!

 

[everhopeful]

Ok, I see!! Hope they call soon and you can get a plan of action!

Xx

 

[alicatt]

Yes correct I suffer with repeat pregnancy loss. I have similar levels of NK cells to you but they were more concerned with my toxicity level which gives them a picture of just how aggressive.

For example the patient that saw my fs an hour before I did had a higher number of NK cells than me but her toxicity was only around the 7% whereas mine is around the 11% mark. Less cells but almost double as aggressive, in my case they chose steroids as they are better at targeting higher toxicity levels.

But like you said, we have different issues with our cells, might be worth asking what yours is though?

I started steroids 10 days before transfer to try reduce NK cells before embryo went in.

Could you do something similar with intralipids?

Xx

What kind of steroids are you taking? I took medrol for 4 days after ER I believe, but stopped it after ER, I'm not sure it will be part of my FET? I'm just not sure

 

[L4hope]

Ali I would think you would take Medrol for your FET. I used it for both fresh ivf and FET. It sounds like one month of the ivig would be a good idea and then maintain with intralipids. Hope your doc calls back soon!

 

[ashknowsbest]

Wow I'm getting a little freaked out by all of this talk. I've never in my 2 years and some months trying ... I think it's almost been 3 now been able to get a chemical or miscarriage. Maybe I should be talking to my doctor about this NK cell intralipid stuff ... ? Is it common or what? I wonder why my doctor hasn't brought this up to me yet.

 

[LilFooshFoosh]

Wow I'm getting a little freaked out by all of this talk. I've never in my 2 years and some months trying ... I think it's almost been 3 now been able to get a chemical or miscarriage. Maybe I should be talking to my doctor about this NK cell intralipid stuff ... ? Is it common or what? I wonder why my doctor hasn't brought this up to me yet.

Unfortunately not a lot of doctor's think immunological issues cause problems. Lots of people have had success using IVIg and Intralipids, but most practitioners don't even consider NKa or other immune/autoimmue issues to affect pregnancy or implantation.

I think there are only 4 clinics in the US that are even equiped to run the NKa tests (that could be an old statistic though). It is definitely not common practice; controversial even.

 

[ashknowsbest]

Wow, I'm just surprised because if it's not working to me there's a reason and they need to figure it out! Maybe if this cycle doesn't work I'll go somewhere where they believe in the immune/autoimmune issues. I actually had blood work to check for immune problems and everything came back normal but I'm not sure about the NK cells .. maybe I should ask my doctor exactly what was included in the blood work.

 

[alicatt]

Wow, I'm just surprised because if it's not working to me there's a reason and they need to figure it out! Maybe if this cycle doesn't work I'll go somewhere where they believe in the immune/autoimmune issues. I actually had blood work to check for immune problems and everything came back normal but I'm not sure about the NK cells .. maybe I should ask my doctor exactly what was included in the blood work.

From my experience there are only a handful of Dr's and clinics that are even looking into this, Dr. Braverman was the pioneer I believe. Still there are many in the UK that have done it, like Ever!

I know that the test wasn't one that could be done at Quest or Labcorp, it had to go to a special lab and it wasn't covered by insurance (big surprise).

It is still in its infancy as they continue to run tests. I think that is one reason why so many people feel it is not a good approach, simply because it hasn't been tested. Thing is that so much of IVF is trial and error, so who says that using intralipids is baloney? 30-40 years ago the thought of doing IVF was baloney!

Ash - it is definitely worth questioning your FS about it. And/or seeking another opinion. Can't hurt right?

 

[sekky]

Thanks everybody. Trying really hard to keep it together. Beta # isn't good. Only 3137 up from 2033 a week ago. It did go up more than last week's at least...next u/s isn't until Tuesday of next week. This is so hard.

Thinking of you and keeping you in my prayer keeping everything crossed for you

 

[ashknowsbest]

So true Ali about IVF being baloney 30-40 years ago! Now they do it all the time!! Question though.

If I had immunology blood work done and NK cells were included, say they came back normal, would there still be cause for concern?

Now I kind of feel like maybe I'm wasting this cycle .... however, my doctor and many online articles I've read told me that most women get pregnant on their 3rd IVF cycle. So I'm thinking, maybe it's okay to not do the crazy stuff until the 3rd fails because then it's really cause for concern ... ? Idk maybe I'm just rationalizing now.

 

[sekky]

Hello Ladies

Ali, great news on getting a date for FET

Anxiously, Good luck for transfer today

Mercy, Great 2nd beta

ttc, for no cyct. gotten the email yet?

Sandy - how is down reg treating you today buddy

Hope the rest of you ladies are doing well

 

[alicatt]

So true Ali about IVF being baloney 30-40 years ago! Now they do it all the time!! Question though.

If I had immunology blood work done and NK cells were included, say they came back normal, would there still be cause for concern?

Now I kind of feel like maybe I'm wasting this cycle .... however, my doctor and many online articles I've read told me that most women get pregnant on their 3rd IVF cycle. So I'm thinking, maybe it's okay to not do the crazy stuff until the 3rd fails because then it's really cause for concern ... ? Idk maybe I'm just rationalizing now.

Yes, most say that you get pregnant on your 3rd IVF, but since I don't have insurance, I was paying out of pocket and with my advanced age and needing it was like $18K a cycle. So I simply couldn't afford to do another IVF, nor did I want to subject my body to another one. The second one really messed me up. So I put my foot down and said.. I want answers NOW!

So we did the uterine biopsy and the NK cell testing, which was separate from the other immunology and clotting type tests. I highly doubt it was included for you in your immunology package since it has to be sent to a separate lab and it costs almost $600 to do!

It really is up to you as to whether you want to have the test done now or wait until after your 3rd cycle. In my case the FS said, normally they wait until 3 failed cycles, but he knew I wasn't going to go for another full IVF so we did the testing early.

 

[Mells54]

Wow! There are so many different approaches to IVf and what might and might not work. I'm interested to see how this all works out for you Ali. Ash, it's always worth asking about. Maybe you ladies will be pioneers in this testing for future infertility patients.

AFM, had a hysteroscopy today and everything looks good for my next cycle. It's amazing how little I have to do for a donor egg cycle. I will still do Lupron, estrogen patches, and PIO. I only have 3 monitoring appts then transfer. I won't have to miss nearly as much work!!!! My estimated date is 26 Jun for ET. Of course that will depend on my donor's response.

 

[Em260]

Turkey - sending you I will say some prayers for you and your little bean.

Edamame - I'm so sorry about your Mom I hope she doesn't need surgery


Mo - I'm so happy you're getting a second opinion. Sometimes a fresh set of eyes can make all the difference.

Mells - great news about your hysteroscopy! So exciting that you're getting started!

LilFooshfoosh - welcome!!

ttc- congrats on getting rid of that cyst and getting started! Yay!!

Ever - good luck tomorrow!!


AFM - I have big news!! DH and I have decided not to waste time with another IUI so we're moving on to a FET this month I should get AF in the next couple of days and our tentative transfer date is May 24th . If this FET doesn't work then we'll do another fresh IVF in June. I'm soo excited because I'm finally getting to transfer! Both of my IVFs were freeze all cycles due to my surgery. I haven't been this hopeful and happy for a long time

 

[Em260]

Anxiously - sorry, I missed you above. Hope your transfer went well!

 

[Anxiously]

It was quite a harrowing experience actually. The doc had trouble reaching my uterus the 1st time round, and had to try again 15 min later. My bladder was 3/4 full, but it wasn't pressing down on my uterus enough to make for a straight path. I had the same issue during my IUIs, reaching the uterus is like going through a right-angle triangle!

That was a really long 15 min. All I could think about was whether my 2 embryos will stay alive! The 2nd try was still difficult...all 4 of us (doc, nurse, embryologist, and me) were just staring at the monitor, willing for the catheter to pass through. Then all of the sudden, we see a "pop" and an unanimous sigh of relief all round.

My beta is scheduled to be on May 16, but I've delayed it to May 20 as I'll be holidaying in Kyoto. Won't be bringing any test sticks with me either. All I can do now is to leave all to fate.

Turkey, stick little bean stick! You'll be in my thoughts and prayers.
Em260, yay for FET! And ttcbaby, yay for stims!
edamame, hope your mom's doing better now. TWW is really hard isn't it? I have to wait for another 20 days...
everhopeful, GL for your scan!
MoBaby, I hope your new RE can throw in some new perspectives. Would you be able to transfer your frosties over to the new RE, or must you go back to the current one for your next FET?

I'm overwhelmed by the discussions about IVIg infusions, Intralipids, NK cells etc! I've only had the karotype test done, and I know my doc sent my blood for several other tests that I had no clue about (all I know is that they are normal). It's a public hospital, so they tend to be less personal with the patients...and I will have to pay about $300 just to get a copy of my medical reports. Very useful info though, it may be something that I'll check out with a new specialist if I still don't succeed with my remaining frosties.

to the rest of the ladies!

 

[angelap1215]

Just got back from the FS office and I'm set to go!!!
I even have a FET date AMAZING! My transfer is going to be on 5/17/2013. WOHOO So we will use the patches, and PIO and will do the IVIg infusion either later this week or early next week. Then if I get pregnant we'll have to continue doing the IVIg infusions 1x a month for 4 months in total (to get me out of the first trimester).

Great news lots of your way