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hopeful7608
hopeful7608

May 30th, 2012, 12:13 pm #1

I am feeling better being at CCRM because at least I feel as though they are DOING things rather than just telling me "sometimes it is just luck." They put me on levothyroxine, made me do this mock cycle, etc. So the endometrial biopsy is done days 7-11 after ovulation and is looking for beta integrin which is a sticky protein that is important for implantation. iF absent, they treat you with 2 months of Lupron Depot so I just am hoping that I have it because that will be a drag. If I am okay, we will move forward in July or August. It is a little easier because we will use one of their donors who are all screened and ready to go.

Even if you are considering them as a back up, you might want to set up a phone consult because those sometimes are a 2 month waiting list and ours was free. It then allows you to move forward when you are ready but at least you are over the first hurdle. It is pricey but honestly compared to our cycle in Boston where we had to pay for agency donor with NO kind of guarantee, it is not that much more $$. SO far I am feeling more confident but I probably felt this way for our first try in Boston as well....Hope that helps!
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Violet
Violet

May 30th, 2012, 1:09 pm #2

I am going to set up a phone consult just to see what they have to say. That is a good idea.

I feel the same way you do. I am tired of hearing that it could work next time...while our life and our $ are passing by.

Did they have you do the beta integrin because you have not had implantation? I have done a search to look for your history but am having trouble finding older posts.
I hope you don't have issues with that and you can get moving. I am sure you are ready!

So, they have donors that are ready to go or you can use the egg bank, correct?
I checked the website and it looks like it is $30K for a donor and then all the testing/meds. Is the egg bank less?

Thanks for all of your help. I'm frustrated that Boston doesn't have better fertility clinics considering we have such great health care in other areas.

Thanks,
Violet
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hopeful7608
hopeful7608

May 30th, 2012, 7:08 pm #3

No I actually had one positive beta of 40 on our first frozen transfer so I had implantation and also had a miscarriage at 8 weeks with an IUI/OE about a year ago so we are hoping I will have the protein. Brief history....skipped OE IVF because I was 41 and just wanted to have a baby and knew my odds were slim with OE IVF. Used BIVF, picked proven donor (although in hindsight perhaps not as solid as we thought...1 preg on a FET, another recipient had MC but lots of frozens)...we had 8 "great" 3 day embryos but for mysterious reasons they would not let us go to blast so we had 1 failed fresh and 2 failed FETs since January. They never changed anything and told us "bad luck." I did do all the immune testing and added steroids and intralipids on my own which unfortunately did not help. I do have an elevated ANA...very nonspecific finding.
CCRM does not believe in the immune stuff by the way......so as everything seems to be checking out ok perhaps it is just how good the lab is. What clinic in Boston are you at? I have heard much better things about the Brigham.
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Violet
Violet

May 31st, 2012, 12:42 am #4

You are smart to go right to DE. Part of me wishes I did that as I would most likely have a couple kids by now.

I can't believe they did not let you go to blast. Was that this January...like 2012? So, they never told you why? You are supposed to go to Day 5 if you have 8 HIP embryos on Day 3. I am at BIVF as well. As you know, I am feeling frustrated with them as they don't want to change any part of my protocol for the FET other than doing the endometrial biopsy...which I suggested. I like our Dr. a lot and he has been wonderful with us however i am concerned about doing nothing different. That is worrisome to me. I am actually thinking about doing a consult with the Brigham.

Who did you do immune testing with? Did you get your Dr. at BIVF to prescribe the meds you were recommended? My RE wants to do another round of the basic immune panels for miscarriage as I had the last done awhile ago but that's it...nothing extensive.

Our donor had 1 pg right before us however I do not know if it is an ongoing pg.

I am trying to have hope for our FET...just hard to right now.

Thanks for your help. Glad to know I am not the only one in Boston dealing with all of this craziness!...Violet



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Molly
Molly

May 31st, 2012, 1:40 am #5

I am feeling better being at CCRM because at least I feel as though they are DOING things rather than just telling me "sometimes it is just luck." They put me on levothyroxine, made me do this mock cycle, etc. So the endometrial biopsy is done days 7-11 after ovulation and is looking for beta integrin which is a sticky protein that is important for implantation. iF absent, they treat you with 2 months of Lupron Depot so I just am hoping that I have it because that will be a drag. If I am okay, we will move forward in July or August. It is a little easier because we will use one of their donors who are all screened and ready to go.

Even if you are considering them as a back up, you might want to set up a phone consult because those sometimes are a 2 month waiting list and ours was free. It then allows you to move forward when you are ready but at least you are over the first hurdle. It is pricey but honestly compared to our cycle in Boston where we had to pay for agency donor with NO kind of guarantee, it is not that much more $$. SO far I am feeling more confident but I probably felt this way for our first try in Boston as well....Hope that helps!
Hello,
I sm also in Boston and have done 4 ivf cycles, two at mgh and 2 at the brigham. While hese were OEivfs, bases on my experience, don't waste your time with mgh. While BWH hasn't given me success, i think they are worth a consult. I've seen Hornstein and Ashby is great, too.

BWH doesn't really believe in the immune stuff. I asked to be tested and doc said not necessary b/c they wouldn't treat me any differentlly.

Now, that said... After 5 yrs of ttc, i am now 42 and had 2 spontaneous pregnancies and 2 early losses (1 chem, 1 loss at 7.5 weeks after heartbeatt) and both were in past 6 months. I wonder whether there is something going on ... Crappy eggs or is my body creating the righte environment? While preganancies were spontaneous, the brigham fertility practice monitored me, but felt that ano need to test progesterone or estrogen because that's irrelevant (according to them) with spontaneous pregnancy. Yet, with last pregancy (chem .. Second beta went down ...) i asked person taking blood to please test estrogen and progesterone too. Numbers were terrible. Estrogen was TEN (amazingly low) and progesterone was 5.3 (yes that's a decimal point between the numbers) and that was after 4 days of self medicating with crinone. Althaough i was only 4.5 weeks at the time those numbers were terrible. Again, makes me wonder whether i should be monitored during a typical menstral cycle ... If i have the fortune to get preganant again, do i need estrogen and progesterone support? I bring this up beccau the brigham is kinda old school and i think they now think i am nuts for suggesting this.

With all of that ian mind, i too am exploring DE. Like you, i dont have the luxury of time, or endless funds (or the emotional energy) for endless cycles and failures. We have been paying ouag of pocket for awhile now. So, i ponder do i stay in boston and do DE at the brigham, do i look at a guarantee plan at someplace like shady grove, or is there someplace else? CCRM? As far as i can tell, when you add up donor, agency, meds, cycle, etc, at the brigham, DE will cost aout $43k. Is that what you are finding elsewhere?

I am startring to ramble so i apologize. Just seems like we are all pondering the same things here in beantown. I would give hornstein a call if for no other reason to get another opinion. He is a straight shooter in a non-condescending, realistic but supportive stiil. He isnt the type to give you a hug but he is a good man and a capable doctor. I hope you know what i mean.

Best wishes,
M
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Molly
Molly

May 31st, 2012, 1:42 am #6

M/c mentioned above
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Violet
Violet

May 31st, 2012, 7:05 pm #7

Hello,
I sm also in Boston and have done 4 ivf cycles, two at mgh and 2 at the brigham. While hese were OEivfs, bases on my experience, don't waste your time with mgh. While BWH hasn't given me success, i think they are worth a consult. I've seen Hornstein and Ashby is great, too.

BWH doesn't really believe in the immune stuff. I asked to be tested and doc said not necessary b/c they wouldn't treat me any differentlly.

Now, that said... After 5 yrs of ttc, i am now 42 and had 2 spontaneous pregnancies and 2 early losses (1 chem, 1 loss at 7.5 weeks after heartbeatt) and both were in past 6 months. I wonder whether there is something going on ... Crappy eggs or is my body creating the righte environment? While preganancies were spontaneous, the brigham fertility practice monitored me, but felt that ano need to test progesterone or estrogen because that's irrelevant (according to them) with spontaneous pregnancy. Yet, with last pregancy (chem .. Second beta went down ...) i asked person taking blood to please test estrogen and progesterone too. Numbers were terrible. Estrogen was TEN (amazingly low) and progesterone was 5.3 (yes that's a decimal point between the numbers) and that was after 4 days of self medicating with crinone. Althaough i was only 4.5 weeks at the time those numbers were terrible. Again, makes me wonder whether i should be monitored during a typical menstral cycle ... If i have the fortune to get preganant again, do i need estrogen and progesterone support? I bring this up beccau the brigham is kinda old school and i think they now think i am nuts for suggesting this.

With all of that ian mind, i too am exploring DE. Like you, i dont have the luxury of time, or endless funds (or the emotional energy) for endless cycles and failures. We have been paying ouag of pocket for awhile now. So, i ponder do i stay in boston and do DE at the brigham, do i look at a guarantee plan at someplace like shady grove, or is there someplace else? CCRM? As far as i can tell, when you add up donor, agency, meds, cycle, etc, at the brigham, DE will cost aout $43k. Is that what you are finding elsewhere?

I am startring to ramble so i apologize. Just seems like we are all pondering the same things here in beantown. I would give hornstein a call if for no other reason to get another opinion. He is a straight shooter in a non-condescending, realistic but supportive stiil. He isnt the type to give you a hug but he is a good man and a capable doctor. I hope you know what i mean.

Best wishes,
M
I am glad you barged! I am sorry for everything you have gone through. It's hard.
I think you are onto something with your estrogen and progesterone. Definitely. I try to have it tested here a d there a d supplement the prog.
Thanks for the heads-up on Ashby and the immune stuff. Nobody seems to understand it around here.

We used an agency and Bivf. Although we have 4 blasts frozen we could have had a better cycle. We are going to use frozens and if they don't work we will think we will do ccrm. I have insurance that covers de except for donor agency and testing so it was much cheaper. I would do a guarantee if I were you.

Please let me know if you have any more ? I would love to hear your progress.
Violet
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Anonymous
Anonymous

May 31st, 2012, 9:23 pm #8

This was my plan too, to cycle through all our frozens on the east coast, and if that didn't work, fire my clinic and head to CCRM. And yes unfortunately, the 10 frozens we had did not work so we headed to Colorado to start over. By this time of course I thought there must be something seriously wrong with me. Brought our same agency donor from back east. Had success on first try with single embryo transfer, with 6 top grade frozen blasts left. It was a wonderful experience and I guess I should have started at a top clinic in the first place. CCRMs opinion was that our first clinic did not handle things well, and that this was not a recipient/immune problem requiring IVIG and/or intralipids, it was the embryos.
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hopeful7608
hopeful7608

June 1st, 2012, 12:44 pm #9

You are smart to go right to DE. Part of me wishes I did that as I would most likely have a couple kids by now.

I can't believe they did not let you go to blast. Was that this January...like 2012? So, they never told you why? You are supposed to go to Day 5 if you have 8 HIP embryos on Day 3. I am at BIVF as well. As you know, I am feeling frustrated with them as they don't want to change any part of my protocol for the FET other than doing the endometrial biopsy...which I suggested. I like our Dr. a lot and he has been wonderful with us however i am concerned about doing nothing different. That is worrisome to me. I am actually thinking about doing a consult with the Brigham.

Who did you do immune testing with? Did you get your Dr. at BIVF to prescribe the meds you were recommended? My RE wants to do another round of the basic immune panels for miscarriage as I had the last done awhile ago but that's it...nothing extensive.

Our donor had 1 pg right before us however I do not know if it is an ongoing pg.

I am trying to have hope for our FET...just hard to right now.

Thanks for your help. Glad to know I am not the only one in Boston dealing with all of this craziness!...Violet


Our doctor at BIVF thought immune issues were hocus pocus.....however my husband and I are physicians so did the research and were able to do the intralipids ourselves based on the SIRM protocol (we have a friend who used them there) as well as added low dose prednisone. Needless to say.....for me it made no difference. I am not sure that I would invest in an extensive immune work-up unless you have a known autoimmune disease however if they have not checked for all the clotting disorders, etc those are always a good idea.

You should feel pretty good since you have frozen blasts left.....there is a good likelihood they will work. Our BIVF doctor did add prednisone/doxycyline before transfer because we asked and prednisone is generally the treatment for most immune issues. Once our fresh cycle failed I scheduled the CCRM consult because I had lost confidence in BIVF. I am not sure why we did not go to blast nor did they vitrify our embryos (the reason I will NEVER go back there or recommend them to anyone). It was on a weekend and they would not allow us to talk to a physician even though this was against what our orders said since we specifically asked to go to blast. The nurse on that weekend said that our embryos did not meet the protocol to go to blast.....I think only 6 were high implantation graded. Who knows....just trying to remind myself everything happens for a reason!
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Violet
Violet

June 1st, 2012, 6:24 pm #10

This was my plan too, to cycle through all our frozens on the east coast, and if that didn't work, fire my clinic and head to CCRM. And yes unfortunately, the 10 frozens we had did not work so we headed to Colorado to start over. By this time of course I thought there must be something seriously wrong with me. Brought our same agency donor from back east. Had success on first try with single embryo transfer, with 6 top grade frozen blasts left. It was a wonderful experience and I guess I should have started at a top clinic in the first place. CCRMs opinion was that our first clinic did not handle things well, and that this was not a recipient/immune problem requiring IVIG and/or intralipids, it was the embryos.
Thanks for sharing this information. I am glad you felt a lot better at CCRM.
Are you comfortable sharing which clinic you worked with in Boston?

I am concerned that my clinic did not handle well either. I will not know until we transfer the frozens. part of me just wants to go right t CCRM and not mess with the frozens however we really like our donor so this would be the reason for the FET.

So glad you have had success and have 6 left. Amazing.
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