Help!!!! Need advice: considering self-cancelling IVF. Update (GAHH!) Another update!

pblge

My doctors haven't cancelled my cycle, but I'm wondering if I should. It's going very badly. I do have insurance coverage for IVF, but it's with a lifetime cap of $50K, not including meds. I think that's about 3-4 cycles total for all our procreative needs. IVF#1 was a bust in the final analysis, with nothing frozen, so I really need a good cycle. I have an AMH of 6.0 and an AFC = 20-25, so theoretically I should get lots of eggs, but it doesn't work out that way. IVF#1 was almost cancelled at the last minute because my E2 crashed by about half. This cycle has gone even worse:
Days 1-2:     150 Gonal-F                  D3 E2: 222
Days 3-4:       75 Gonal-F                  D5 E2: 482
Days 5-6:    37.5 Gonal-F                  D7 E2: 92!!!!!!
Days 7-8:     150 Gonal-F                  D9 E2: 322

322 at day 9 seems pretty terrible, especially when I was higher at day 5. I'm also thinking of these two things:
1. Longer stims are associated with less chance of success. The doctor in whom I have zero faith told me that this isn't true for those with PCOS profiles (I don't have PCOS but I act like it during stims), but I don't know if I believe him. Does anyone know?
2. Problems in stims are associated with increased genetic abnormalities, meaning a higher chance of failure AND a higher chance of miscarrying even if I do end up pregnant.

I'm strongly considering scrapping this cycle, and perhaps even giving up on my clinic to go elsewhere, but that's a separate post. The docs told me to hold steady at my current dosage and come back in for another E2 test on Monday.

Any advice?????????????

poohniki

Just want to give you lots of hugs. I don't really have any advice on this but I will say that I think how you feel is really important. If you are not feeling this cycle and having major doubts, listen to yourself. Everyone has some level of fear- but it seems like if you go through with this and nothing happens, you will be left with regret. 

If you've done better with your first protocol, you may want to just try that again. I'm so sorry you don't have faith in your doctor. You have a lot of information right now- more than enough to get a few second opinions if you want. FX you find the decision that is right for you

keziah23

If you cancel now do you save any money towards your lifetime total?

jaztastic

I feel for you... I'm sorry things aren't going better. Your E2 levels do seem a bit low. At the end of the day you have to be comfortable with the decision, even if that means walking away from this cycle. I wish there was a RE on here to help give us a second opinion for situations like this. I know me personally, I just put my head down and pray like crazy and finish the cycle out. But that's my personality. Just know that whatever your decision you have support here.

pblge

keziah23 - I would assume so, since I haven't done ER or ET, which is where most of the $$ goes.

poohniki - You make a good point about the regret. I will say I have faith in 2/3 doctors at my clinic, but the third is the one in charge this weekend.

keziah23

That's a hard decision. Can you talk it over with your doctor? The one you trust that is

pblge

Not until Monday. I guess at the moment I'm leaning towards doing the shots until then. Reasons not to are basically to save myself the misery of the shots and the side effects.

katib77

I agree see how Mondays e2 goes, but I would def seek a second opinion if you dont trust your RE.

pblge

I charted my E2 levels in my three cycles with injectables.

First cycle was supposed to be with TI (no need for IUI as OH's sperm are perfect...jerk), but I had too many follies (~30). They sat me down to talk about converting to IVF, but then my E2 crashed so the whole thing was cancelled.

IVF #1 was the Long Lupron Protocol. In retrospect it went relatively well.

IVF #2 is the antagonist protocol, which I have recently realized starts EXACTLY the same as the first cycle in which I couldn't sustain climbing E2 levels. I have no idea what my doc was thinking in suggesting that protocol change.

When I look at this chart I think "Cancel!"

pblge

Trying to attach....

STBMrsMiller

I went through a cancellation earlier in February. I love my RE and she suggested canceling on day 9 with a lower E2 level than yours because stimming for more than 12 days isn't successful, as you mentioned. She also gave us the option of continuing for two days to see where things were, and that's what we did to give ourselves more time to come to terms with canceling. You've got to make a decision you and DH are comfortable with. Good luck!

missmarypoppins

I'm so sorry you're going through this. It seems like you're leaning towards canceling, and I think I would be too. If it were me I would see what my E2s are like Monday but gear myself for canceling. Like PPs said, stimming for too long reduces quality. And seeking out a 2nd or even 3rd opinion could never hurt. ((Hugs))

RunCC37

Sorry you are going through this... It is scary and stressful enough to do IVF. I think the suggestion to see how things look on Monday is a good one. Perhaps you can talk to your doctor (as opposed to the one you don't trust) and get some honest feedback. If you end up canceling, then definitely take some time to get some more opinions. ((Hugs))

Mozzarella13

I just want to say so sorry you are dealing with all this, and I agree with PP, wait till Monday, talk to the doc you trust, and if you still have doubts, go for a second opinion.

Grateful&Thankful

pblge said:

My doctors haven't cancelled my cycle, but I'm wondering if I should. It's going very badly. I do have insurance coverage for IVF, but it's with a lifetime cap of $50K, not including meds. I think that's about 3-4 cycles total for all our procreative needs. IVF#1 was a bust in the final analysis, with nothing frozen, so I really need a good cycle. I have an AMH of 6.0 and an AFC = 20-25, so theoretically I should get lots of eggs, but it doesn't work out that way. IVF#1 was almost cancelled at the last minute because my E2 crashed by about half. This cycle has gone even worse:
Days 1-2:     150 Gonal-F                  D3 E2: 222
Days 3-4:       75 Gonal-F                  D5 E2: 482
Days 5-6:    37.5 Gonal-F                  D7 E2: 92!!!!!!
Days 7-8:     150 Gonal-F                  D9 E2: 322

322 at day 9 seems pretty terrible, especially when I was higher at day 5. I'm also thinking of these two things:
1. Longer stims are associated with less chance of success. The doctor in whom I have zero faith told me that this isn't true for those with PCOS profiles (I don't have PCOS but I act like it during stims), but I don't know if I believe him. Does anyone know?
2. Problems in stims are associated with increased genetic abnormalities, meaning a higher chance of failure AND a higher chance of miscarrying even if I do end up pregnant.

I'm strongly considering scrapping this cycle, and perhaps even giving up on my clinic to go elsewhere, but that's a separate post. The docs told me to hold steady at my current dosage and come back in for another E2 test on Monday.

Any advice?????????????

I am sorry. This is a HARD decision to make. IMO, I think you should listen to your gut and cancel. I do have a question though....When did they start you on the ganirelix and do you know the sizes of your follicles currently? That is a huge drop in e2 levels. It seems like it has rebounded nicely but then I would worry what that will mean quality wise.

pblge

@Grateful&Thankful - No Ganirelix yet. They said that starts when E2> 1000 or when follies=14 mm or so. At last measure (d7) I had ~20 follies around 9 mm.

SuperPsi

@pblge-so sorry this is happening to you!  I had something similar on my last cycle, which was IUI converted to IVF then cancelled.  This was after 21 days of stims.  I asked the doc about stimming for so long and she did say something like what your doc did....basically that the 12 days was from when follies really got going so we were okay.  Got to admit, it felt like a cop-out and I've not heard that anywhere else and couldn't corroborate it with Dr.  Google.  Which isn't to say that it's not true, but it just left me wondering.  I felt weird about that whole cycle, up and down.  In retrospect it seemed to b doomed from the start, which is what I thin you're feeling abot this one.  I'd Give it til MOnday to confirm, but go with your gut if it's gonna get you another, hopefully more successful, cycle down the road.

pblge

geordie314 - I forgot that you can convert back to IUI from IVF. That's a really good point, thanks! I doubt we'd do IUI, since my OH's swimmers aren't the problem, but we might be able to think about TI.

I'm beginning to wonder if I'm just bad at IVF. It's supposed to be a better bet for most people, but I'm wondering if I'm the exception.

pblge

Well, I tried to get my doc to call me today to talk about cancelling, but he's apparently "too swamped," so the nurse called me back to say they want to do another u/s tomorrow before we make a decision. E2 today (day 11) came back at 980.

I hate limbo!!!

missmarypoppins

Well that's a good sign that your E2 has come up so much! Are you still leaning towards canceling?

pblge

missmarypoppins said:

Well that's a good sign that your E2 has come up so much! Are you still leaning towards canceling?

I am. I'm worried about egg quality. But if the doctor tells me tomorrow that he's confident in success then I might go along with it. I hate to have all this work, and all the bruises on my veins and stomach, be for nothing!

missmarypoppins

I think Stimming for up to 12 days is considered normal. So if you stim today and tomorrow you really might be ok. It's such a good sign that your E2 has gone up.

Twinkie0612

pblge said:

geordie314 - I forgot that you can convert back to IUI from IVF. That's a really good point, thanks! I doubt we'd do IUI, since my OH's swimmers aren't the problem, but we might be able to think about TI.

I'm beginning to wonder if I'm just bad at IVF. It's supposed to be a better bet for most people, but I'm wondering if I'm the exception.

I think geordie was talking about a conversion protocol for IVF (agonist/antagonist conversion protocol).  You had decent results with a long lupron protocol (agonist protocol), but haven't done well with a antagonist protocol.  A conversion protocol combines the two.  You start out down regulating with lupron (like the long lupron protocol) this shuts down your body's production of hormones, then you switch from lupron to ganirelix.  Lupron can supress your ovaries which is not good if you are a poor responder, so using ganirelix for ovulation supression is a better choice. 

jaztastic

Well thats a big increase... I hope things look good when you go in tomorrow. 

jlr96

That's a pretty good E2 level!  Hopefully everything looks good tomorrow & you don't have to cancel.

pblge

So I'm worried that I might be jumping the gun here, but it looks like I'm converting to IUI. We did a scan this AM and three follies had pulled way ahead of the others, which were all still smallish (8-10 mm). The better news is that they're all on my good side, which is the left (right tube is there but nonfunctional). Doctor will call to confirm after my E2 comes back later today. 

He was also very apologetic. We were in agreement that this protocol is apparently a terrible match for me, and the med choices early in the cycle didn't help matters. (Apparently 37.5 units of Gonal-F isn't enough.) If we do this again, we'll likely go back to the Long Lupron. He said he chose this protocol because the Ganirelix can help prevent OHSS, which was the worry with my last cycle. But my E2 was over 4000 last time and I had no symptoms, so he said he would worry less about OHSS with me than for some other people.

The irony of this is that the prior attempt at an IUI-type cycle was a failure because I had way too many follies. That's when the decision was made to move me straight to IVF. This result is exactly what we wanted before but couldn't get: 2-3 good follies on the same side as my good tube. I'm actually feeling pretty hopeful now!

Twinkie0612geordie314 -Y'all helped me appear SO smart today! I mentioned this kind of conversion cycle to my doc. He thought the same thing that I did--IVF to IUI, but then I said I meant the Lupron to Ganirelix. He said that that journal article had just come out this month and they had a meeting scheduled to discuss it next week. He was really impressed that I'd heard of it already. Still not sure it's a good fit for me, as I'm not a bad responder, just very sensitive to both the meds and changes in the meds, but he said he'd look into it. Thanks!!!