Tuesday, May 31, 2011

Cue tears

I started Lupron on Sunday.

I had thought I was done with Lupron after moving to an estrogen priming/antagonist protocol for IVF 3 and 4.

But Dr. Sh.er uses an agonist/antagonist conversion protocol, which starts with a week of tiny Lupron doses (10 IU once a day for 4 days, then 5 IU a day for 3 days).

Apparently, that's not tiny enough - Lupron tears started last night.

I was irritable and sensitive all day, and finally at night I reacted poorly to a funny comment by my husband, and he said 'are you pmsing', and I said 'no I'm on Lupron', and we realized that was behind the whole day of emotional muck.

Oh, and yesterday was my birthday. :D We actually celebrated it over the weekend, when we went up to Sonoma, and we had a fabulous dinner on Sunday night with my husband's sister and her husband, as her birthday is 3 days before mine. And we'll celebrate with my family next weekend.

I am glad to be starting meds for IVF 5.1 - I much prefer the feeling of making forward progress to the feeling of waiting around for things to happen. And even though this is just going to be one of three small milestones on the way to December/January, and even though I have to figure out what we're doing about the DQ Alpha match (I emailed Dr. Sh.er with some followup questions but haven't heard back yet), moving forward is good.

Oh, and I'm extremely happy that Dr. Sh.er lets me do the subcutaneous shots anywhere I want. Upper thigh happens to be really easy for me, and it's nice to give my tummy a break.

Lupron this week, then Cetrotide and estradiol valerate next week.

Hope everything had a nice Memorial Day weekend!

Wednesday, May 25, 2011

Not the type of surprise I like

(Warning, this is going to be a long, detailed, post.)

I had my followup phone call with Dr. Sh.er yesterday. (He does this after every phone consult, whether or not you're doing a cycle with him.)

Remember that in our first phone consult he wanted us to get tested for a possible DQ Alpha match; although he thought it was unlikely, he wanted to rule it out?

Well, we didn't rule it out. We have a partial DQ Alpha match. Dr. Sh.er believes this, not my endometriosis, explains my elevated NK cell levels and TH1:Th2 issues. We thought we were dealing with diminished ovarian reserve and immunological issues that were manageable. Instead we're dealing with diminished ovarian reserve, and a ~50% chance per embryo that I can carry it to term, even with managing the immunological issues.

My understanding in layman's terms is that the DQ Alpha gene from the paternal side sends a signal to the mother when the embryo is trying to implant, telling the mother to recognize this embryo as "safe" (e.g. don't have your immune system attack it). If the DQ Alpha gene happens to match the mother, then this signal gets confused. With a partial match, 1 out of 2 embryos will match (there are 2 genes that provide this signal, and one gets used in the sperm contribution to the embryo). With a complete match, 2 out of 2 embryos will match. Matching embryos are very unlikely to survive to birth - the NK cell activity gets higher and higher, and eventually Intralipids can't control it.

Since I'm not a doctor, and that's just my understanding of how this all works, here's a link to Dr. Sh.er's recent blog about this topic: Understanding Immunologic Implantation Disfunction"

What this means for us is that a CGH normal embryo will still have only a 50% chance of being compatible with me. And because the match is between the sperm and the uterus, not the sperm and the egg, it means donor eggs aren't a solution - I'd still have a 50% chance for each embryo.

So... in the short term this doesn't affect anything regarding our three planned retrievals. But... once we figure out how many CGH normal embryos we have, we're going to have some difficult decisions about what to do with them.

The safest path would be to use a gestational carrier (who is screened to make sure she doesn't have a partial DQ Alpha match with my husband). That would give each CGH normal embryo the 72% live birth rate chance that Dr. Sh.er expects.

But... I really want to be pregnant. But... the idea of another miscarriage is daunting.

I don't know yet what the chance of success with a matched embryo is - it's not 0%, but it's low. And I don't know how quickly we'd know that it's a problem embryo. (He only transfers one embryo at a time in cases of a DQ Alpha match, so that a problem embryo doesn't lead to miscarrying a normal embryo as well.)

Since I don't expect to have very many CGH normal embryos, I'm not sure I can risk them in my body.

Which is devastating.

I really didn't expect this - our two miscarriages were missed miscarriages, with chromosomal issues. And my pregnancies, short-lived though they were, were easy.

It makes me very sad. And I feel (again) betrayed by my body.

We could choose to use a gestational carrier for our embryos, since we're likely to have only a few. Or maybe use a GC for the first one, and then risk the others in my body. Or use GC for our embryos, and risk donor egg embryos in my body since we're likely to have many more to work with. It's a whole set of options I didn't think I had to face, and it's deeply upsetting to have that all turned upside down.

All that said, I'm glad to know. I would much rather make an informed decision, weighing the risks, than to transfer CGH normal embryos in my body and wonder why they either a) don't take, or b) keeping miscarrying.

If you're feeling supportive tonight, please also visit Augusta who got some devastating news today.

Wednesday, May 11, 2011

IVF 5.1

It's crazy to write IVF 5. How have I possibly ended up here? It doesn't depress me, it's just shocking that I've gone through that much in the past 15 months.

I'm defining IVF 5 to consist of IVF 5.1 (retrieval in June), IVF 5.2 (retrieval in August), IVF 5.3 (retrieval in October), and then IVF 5 finishes with transfer in December or January (assuming we have good embryos to transfer, which is what I'm doing).

So. Last Wednesday morning my husband and I went to have blood drawn for the DQ Alpha testing. That got sent off, and results should be back in a few weeks, although even if we do have a partial match (which no one really suspects), it won't matter until transfer time.

I also had my nurse consult last Wednesday, just to talk through the medications and pre-cycle testing that I need to redo. Since most tests are good for 18 months, we didn't have to redo them when we started IVF last year, but now they're too old. This is going to be a very different protocol than any of the ones I've done before (micro dose lupron flare, which I should never have been on, and estrogen priming/antagonist which worked reasonably well).

For the gory details, read on...

I'm on birth control pills now - at the end of May I have a week of Lupron in the morning (10 units while overlapping with BCP, and then 5 units for 3 days after that). Then I do a half dose of Cetrotide (like Ganirelix) for about a week, with estradiol valerate injections twice during that week. The following week (when I'm on my trip in Mexico), I start estradiol suppositories in the evenings, start Gonal F at a super high dose in the mornings, along with a full dose of Cetrotide, and twice-weekly estradiol valerate shots continuing. I also start Luveris that week. Then I fly to Vegas and we find out what all those meds are doing to my follicles.


I picked up the cheaper meds this week at my local compounding pharmacy (lupron, estradiol valerate, my Novarel trigger, and the estradiol suppositories). The 7 (!!) Gonal F pens, Cetrotide, and Luveris will be coming week after next from Freedom Pharmacy.

The bloodwork I had to have redone was TSH, prolactin and rubella. I also have to have a physical done (form for my local doc to fill out, which will happen on Friday morning) and I may need to get my pap smear done since it's slightly more than 12 months old. I also faxed the forms to my ob/gyn and previous RE to have my records sent to Dr. Sh.er.

I'm happy to have a plan and very curious to see how I respond to this vastly different protocol. I booked our flights to Vegas, and am working on the hotel - since my husband will be working remotely, and we'll be there a whole week, we're going to stay somewhere that has kitchens/laundry. Also booked us to see a Cirque du Soleil show that we haven't seen yet (since they keep opening new ones there.)

I've decided to largely stay off twitter for the rest of this year (e.g. not checking it multiple times a day). I'm not going to have "progress" for 7 months, and it's too hard to see BFPs and pregnancies progressing while I'm in limbo (for a good reason, but still in limbo). I'm still reading and commenting on blogs, and I'll be on twitter more around my retrievals when I have interesting info to share, but I'm focusing on the blog for now.

Sunday, May 8, 2011

Not my favorite day

This is my fourth Mother's Day since starting our journey. And I know there will be at least one more Mother's Day childless since the earliest our transfer could be is December or January, making next August-September the earliest we could actually have a baby.

And last week was one year since our first miscarriage.

So it's been a rough day. I went to brunch with my family/grandmother/aunt/cousins, and then spent the rest of the day with my family. Of that group only my immediate family knows about the miscarriage(s) and none of them realized it's been a year.


And my husband just left for five days on a business trip. (On the bright side it's much easier to have him leave this year than it was this time last year... I don't recommend being solo a week after a miscarriage/D&C...)

I'm happy to have a plan for this year and happy to be working with Dr. Sh.er and try a change in protocol. But it's been a long journey and right now it feels like there's still a long journey ahead.

I have a post about my chat with Dr. Sh.er's nurse with more details about my impending retrieval cycle. But I think I'll post that separately in the next day or two.

Monday, May 2, 2011


I just paid my deposit to cycle with Dr. Sher in Las Vegas starting with the June 20 cycle.

I also just emailed my current RE, letting him know we were going to do this last-ditch effort with my eggs with Dr. Sher. I had some stress about that, since we are very grateful to him *and* if my eggs don't work out, would like to work with him for donor eggs. But he sent a nice note back hoping that don't need to do donor eggs. Phew.

I have a nurse consult on Wednesday to talk through scheduling and meds and stuff.

Today is CD 2 - my body had a perfectly normal, 32-day cycle last month, which was a relief. I haven't had a natural cycle (e.g. not recovering from a D&C) since last September, and that was the first one since January 2010.

My husband has been very supportive of my investigating Dr. Sher, and trusts my research and my instinct on what the best option for us is. The financial aspect isn't actually very different (3 cycle embryo banking with Dr. Sher costs about the same as two regular IVF cycles with my current RE), but the medications will be more expensive (estimate is $8-10k of meds per cycle - up from about $5k per cycle now), and thinking about it as one big lump sum is intimidating. (Email me privately if you're interested in the specific numbers.)

Traveling to Vegas will add to the cost - flights are about $150 roundtrip right now on Southwest, and hotel will be $100/night. For this first cycle, my husband will spend the entire time with me in Vegas (working remotely), but for future cycles we're likely to have him just fly in at the end for his contribution. :)

One interesting facet of the embryo banking plan is that I can start with a 2 cycle embryo banking plan, and up to my first egg retrieval, can upgrade it to a 3 cycle plan. I strongly suspect we'll want to do 3 retrievals, but if I happened to have tons of eggs, I might consider doing just 2. Anyway, it's nice to have some flexibility there.

Someone asked last time in the comments about why we're doing CGH and why I'll be on the estradiol. The estradiol is to prime my follicles so they're more responsive to the stimulation medications. With diminished ovarian reserve, estrogen priming is a trick they use to increase results. CGH is our choice - having had two miscarriages that would have been avoided if we'd done genetic screening, I can tell you I would pay ANYTHING to avoid going through that again. The physical and emotional cost of a miscarriage, not to mention the delay while you're pregnant find out it's not good, recover from the D&C, etc., is awful. Even if we end up doing donor eggs, I suspect I'll want to test the embryos to make sure we're only putting back good ones.

I'll post again after the nurse consult on Wednesday, but I think I"ll be starting medications in about 3 weeks.

Thanks for all your input!