Things are rapidly changing...
After the ultrasound and bloodwork Saturday demonstrated a rather exuberant response from my ovaries, Dr. Schl. cut my gonal f in half, from 300 to 150.
He also ordered me to get another ultrasound and more bloodwork yesterday before catching my flight to Denver. And after the results of that came back, he cut my gonal f AGAIN from 150 to 75, and cut my menopur from 150 to 75.
While I know on the one hand this means that he's recognizing my body's robust response, I'm also fearing that he's backing off too much and we won't get the same yield we might have. Because, hey, I'm a medical expert! Oh wait, I'm not, but that doesn't seem to stop me from second guessing.
So now I feel that I'm barely on meds at all! I even had the - very brief - completely irrational thought that I could pretend I didn't remember to cut the dose back to 75. Had to talk myself out of that, because, Mo, that's crazy crazy thinking. You have a doctor. A, um, really good one. Listen to him...
I am so hoping he's remembering that this is our last ditch effort and no time to be conservative in terms of stimulation. He'd told us in person that the risk of hyperstim was very very low, no matter how aggressively we stim, since we'll be freezing everything.
I'm about to head over to the Denver clinic for my first morning monitoring and plan to seek some reassurance, assuming I get to talk to a nurse or doctor type person. Thinking maybe I'll get to see a nurse?
I'll keep you posted on what I learn. Hopefully I'll find out more information that will quell my anxiety.
Mo
**Update**
I spoke to the nurse and told her I was freaking out a bit about the meds changes. Got a little teary eyed, actually, which surprised me (unusual for me) and told her my fear that I was falling through the cracks and that Dr. Schl. had told us no risk of OHSS since we're a freeze all and could she be sure he remembers our specfic case situation and that this is our last hope (that's where I teared up). She heard it all and took it in and said she would speak to Dr. Schl. directly about it and be sure he's keeping all of this in mind.
Ultrasound results from today:
Right Ovary: 5 follicles: 15, 15, 14, 11, 9
Left Ovary: 11 follicles: 15, 15, 14, 13, 13, 13, 13, 11, two smaller ones
(E2 on Saturday was 1260, yesterday was 1880...not back from today yet)
Retrieval is now looking more like Thursday, since my stim is going like gangbusters (I'm on day 7 of stims, for those who asked, and yes, I used Saizen).
So...waiting for call from nurse about dosage instructions tonight. She said he might even have me go back up. Hmmm....never heard of that happening, have you?
Posts
Mo
ReplyDeleteThey always did the same for me--cutting my doses continually. I ended up coasting 1/3 of one of my cycles and I don't think that is a good thing. So don't let them coast you...especially with a freeze-all cycle. How high was the E2? How many follicles? Strong cohort?
You will not see the doctor. You will only see the u/s tech and then the nurse. The techs vary a lot in how they measure--some only measure the top follicles and write things like "and a bunch more under 12 mm" or something like that. Then the nurse reviews it with you and then later the doctor reviews it and a nurse calls with your dosage instructions.
Just be an advocate for yourself. Continually question if that's what you need to do. On our fifth cycle (second at CCRM) we actually requested three regroups with our doctor. She was more than happy to oblige and it just made me so much happier to get to discuss things one on one with her. I think she did that because our first CCRM cycle was so awful and I was so paranoid about a repeat. At any rate, you ARE in good hands, but like any place, you do have to advocate for yourself.
Hang in there and good luck!!!
Maybe your doctor is trying to create a better quality egg? Just a thought. I think he must have seen something in your bloodwork that would warrant the cutback, maybe your E2 wasn't matching up with the number of follies? In any case, it can't hurt to ask questions...especially at this stage of the game. Like you said, it's your last ditch effort. Best of luck at your monitoring appointment.
ReplyDeleteI had the same panic attacks and thoughts about "forgetting" that you have now. Just remember cycles when you get a ton of eggs might mean you get a ton of rotten eggs. That was always the case with me. The pressure of cycle #6 is so hard. I was making appts with other clinics after my fert report. Call the RE if you are nervous. Make him work for that paycheck!
ReplyDeleteI can imagine your concern given all that you've been through to get to this place. I agree with LastChance in that you should continue to be your own advocate AND get all your questions answered and all the reassurance you need.
ReplyDeleteEven though you are at the world famous CCRM don't be shy to remind them that this is your last ditch attempt and that you want to be informed at every turn so that you have the confidence you need to be as zen as possible.
And, I further agree, no coasting.
Do let us know how it went this morning.
No advice, just wishing you good luck!
ReplyDeleteI totally had similar thoughts when doing IVF2. They started me low(to me) 100 gonalf and I really wanted to increase it. But, you are right, we go to them because they are the experts! Good luck and I hope you have a great retrieval and all!!!
ReplyDeleteFingers crossed you get some reassurance today. I understand your anxiety, but it sounds like you are in good hands:). Don't be afraid to ask lots of questions and remind them why you would be concerned. Good luck!
ReplyDeletewaiting with bated breath! I agree with lastchance - be a super aggressive advocate for yourself!
ReplyDeleteI can't really tell from your posts what CD you're on, but I was cut down to 150U Gonal-F on CD8, then 75 in the AM on CD9, and 37.5 in the PM... triggered on CD10 and had 40 eggs retrieved on CD12. There were "18 measurable follicles" recorded on my chart on CD10, but 24 mature eggs retrieved (of 40 eggs total) on CD12. I agree with being aggressive and advocating for yourself, but the reduced lupron worked in my case so it's not necessarily a bad thing.
ReplyDeleteMost of all, I am wishing you fabulous success with this cycle!!
My fingers and toes are crossed for you. xo
ReplyDeleteTry not to make yourself sick with second-guessing. You ARE seeing the best doctors, so - if you can - relax and let them do the heavy lifting.
ReplyDeleteI can say that because i'm so good at letting go, going with the flow, etc.
Hah.
Thinking of you, thinking it's great that you're responding so super-duper well, and hoping it means you get lots of eggies to choose from for this next step.
Praying for you!!
ReplyDeleteGlad those ovaries are being robust. My doc would only ever consider dropping the stim dose, cause he thought increasing it if the initial response wasn't so hot was a bad idea. I'm pretty sure they know what they're doing with you, but you should definitely be able to chat with your doc to get the added reassurance you need.
ReplyDeleteGood luck!!
Ask for what you need-- information, discussion, reasoning, whatever-- ok? you are buying acccess to the best, and you are allowed to ask for anything you need.
ReplyDeletegiving it over is a very hard thing (I had to this cycle and I suck at it)- like sprog, I have no leg to stand on when it comes to advising you to go with it-- but i am all about asking for what you need.
BEST OF LUCK
and go Mo's ovaries! sounds good so far!
xoxx
thinking of you so often you should feel haunted and stalked.
in a good way.
love
kate
Follow your gut. He might be the best but it's your right to ask questions! Good Luck!
ReplyDeleteGood Luck Mo! I am on IVF #2 right now and getting ready to trigger (hopefully tomorrow night). They are worried about me because my e2 is up to 2857 but hopefully my follies are big enough tomorrow morning. You sound like you are doing great! My thoughts are with you.
ReplyDeleteSounds like things are progressing nicely - I think it was great that you told the nurse your concerns - I swear tearing up can make them think of you as more of a person than a number! Keep bugging them, like others have said you are paying for their expertise. Be a total b^&*^ if you have to, but get the info you need, and make sure they understand your situation!
ReplyDeleteI'm sure you are doing it all great, I'm just excited for you - doing this at the best clinic with the best doc; this time will be different hon. Take care.
When they call back with your E2 levels and if they indicate to up the meds again, ask the dreaded "why" question in relation to the effect they are hoping to have by dropping and then increasing the dose.
ReplyDeleteGiven that your follies are pretty much in the same range, I think you are doing great!
Update us with the E2 as that progression will tell a bit of the tale.
GOOD FOR YOU
ReplyDeleteand so sorry for your teariness (I, personally, hate it when I do that). Good for you Mo!
Hoping you get some good feedback and good answers and your stim is going insanely well! good for you!
hoping hoping hoping
and sending big love,
Kate
I am so hopeful that this will be your lucky cycle.
ReplyDeleteKeep the lines of communication open with your Dr! You did the right thing to call. :) Sending lots of prayers and thoughts your way!!!!!!!!!!!!
ReplyDeleteBeen awhile since I've been here.
ReplyDeleteJust wanted to say good for you for asking the questions you needed anwsers for. Don't hesitate to ask as many questions as you want until you feel comfortable with the anwsers. You are your best advocate here.
Good luck with the rest of your stimming.
Sounds like you have a great crop in there! I don't remember exactly how many I had on each side, but in my last retrieval (same RE as you), they were counting something like 8-10 on each side, and they wound up retrieving 38. I remember thinking "where the heck did all the rest of those come from??"
ReplyDeleteDr. Sur did the retrieval, and even though we were also doing a freeze all for CGH, he was concerned enough about OHSS that he decided to order some extra IV fluids, asked us to stay an extra day in Denver, and ordered me to stay on a high-sodium diet for an extra week (beyond the 10 days I had already done). So probably better to take at least a somewhat cautious approach, although I am glad that you pointed out to the nurse the extra-super importance of this cycle.
Hang in there. I'm hoping for fabulous retrieval/fert/blast reports for you during the next several days!
Wishing you soooo much luck, Mo!
ReplyDeleteWe're both on the same cycle day of our MDL protocols. It's nice to have a cycle twin. =)
Looks like your ovaries are going all out! Hoping for your eggs to mature like a fine wine over the next few days. =)