Testing Phase One Done

Yesterday I spent the day at UCSF. Wow! The upside of this trial is that I have my own personal "cancer concierge". Her name is Irene and she makes all my appointments, makes sure I know where I'm going and even calls to remind me of my appointments. I can't tell you how nice that is! She has already given me a tentative schedule through the end of June! It is so nice to have a bit of clue about what I can expect. The downside of the trial is that I have to travel 13.5 miles. Now that doesn't sound like much to you non-city folks, but this particular 13.5 miles takes a good 35 minutes (could be an hour in traffic). To top it off parking around there is pricey! I need to try taking public transit. It would take an hour, but I could just relax and think about the money I'm not spending on parking!

Back to my story about yesterday. I started off by signing all the paperwork necessary to get started on the trial. Then I took the UCSF shuttle across town to have a cardiac MRI. It took them a couple tries to find a vein, but they got it in there. Thankfully I'm not claustrophobic, so the MRI doesn't stress me out, in fact it was quite relaxing. I almost fell asleep! After the MRI I took the shuttle back across town, had blood drawn and had my port flushed (has to be done every 4-6 weeks). Last but not least I had an EKG. Assuming I pass all these tests (and everyone is pretty sure that I will), I will head back in to the city next Thursday for more tests.

Next Thursday will be a full day! I'm scheduled for a CT Scan at 8:45, Mammogram & Ultrasound at 9:30, blood draw at 11:20, meeting with the doctor to discuss intricacies of the trial protocol at 1:00, fine-needle aspiration (biopsy) at 1:45 and injection training at 3pm. After all that I'll be ready to start taking the drug (Lapatinib) on Saturday. The basic protocol is that for 5 days, I'll take the lapatinib twice a day, and take lots of drugs to stay ahead of the GI disturbances. Then, I'll be off Lapatinib for 9 days, and the cycle starts again.

I'm anxious to get started, but I'm sure as it gets closer I'll get more nervous.

Keith's mom is still in the hospital. Things are going along "ok" but measurable progress is still a little hard to come by. She's hanging in there as they try to dial in the drugs and wait for some response. The family has been pulling together, taking shifts to be there with her and keep a handle on all the meds and treatments.

Stable(ish)

I picked up the MRI report on my way home today. It isn't bad news, but it isn't great news either. One area has improved (but isn't totally gone) and the other area looks about the same. I haven't confirmed with any doctor, but I think this means that a lumpectomy probably isn't an option. With that in mind I emailed my oncologist at UCSF the report and told her I'd like to pursue the trial. It is late on a Friday afternoon, so I can't imagine I'll hear back from her until Monday, but at least the ball can get rolling. I'm getting a little anxious about not having any drugs on board right now. I know a week or two won't make a lick of difference, but it weighs on me just the same.

Keith is off in Duluth taking care of his mom (and giving his dad and brother a quick break). She now has a firm diagnosis, but isn't responding as quickly to treatment as one might hope. She is however stable and seems to be tolerating the treatments pretty well. My fingers and toes are crossed that things start to look up soon!

**Edit: I just got a response from the doctor. They're on it. They have scheduled me for a couple different tests on Wednesday of next week. I will get more details on Monday.

Done With This Round of Chemo!

I didn't finish all six, but apparently doing 5 of 6 is good enough for everyone. I saw my doc at UCSF yesterday and my local doc today and both agree that I've had enough and one more dose is not going to make or break anything. I'm tired and done with that crap.

Keith and I had an interesting talk with my UCSF oncologist. She (like every oncologist I've seen - that's 3 at this point) doesn't think a mastectomy is a good option. She thinks we need to wait and see what the MRI looks like. If there is next to nothing left, she'd suggest I get a lumpectomy and radiation. If there is measurable disease, then she suggested a trial they're doing at UCSF. They're testing an already approved drug for HER2+ breast cancer to see if it is more effective at higher doses. It is a targeted therapy so it should be easier than chemo, but it still has side effects (GI issues and skin rashes are the most common). I would be highly monitored during the trial, which is intriguing. I love the sciencey aspect of someone looking at the cancer cells prior to treatment and after treatment to see if this drug is working. At least it sounds more satisfying than waiting for months and doing a scan. There is no promise that this trial might cure me, but I will learn whether my particular cancer cells are sensitive to this drug and if the side effects get bad I can always quit.

Today I talked over all that and more with my local oncologist and she is on board. She is concerned about side effects, but she told me that the side effects go away once you stop taking the drug, so I'm not risking too much there. She also told me that she was leaving the practice here. She is taking a job at Kaiser-Permanente and will be working with her husband. I'm sad to see her leave because I trust her but it sounds like a good switch for her. Really, her leaving almost makes it easier to consider the trial. I would get all my care at UCSF while on trial and while I hate the 45 minute trek to San Francisco (vs. 10 minutes to Berkeley) I trust (and like) my doctor over there.

So the plan of surgery is in question. I'm not sure what to hope for. I mean, I'd love for the cancer to be so small that a lumpectomy would work- but if I have surgery, my summer is pretty much shot between surgery and radiation (daily for 4-6 weeks starting 4 weeks after surgery). The idea of having daily appointments for most of the summer makes the trial more tempting. So I guess the take away point is there is an upside to either option. Regardless, the MRI is scheduled for next Thursday and we have to see that before we take another step.

In other news, the doctors in Duluth think Keith's mom has Myesthenia Gravis. From what we've read it is a chronic but generally manageable thing. The good news is that she seems to be doing a little better these days. Today she even managed to eat! She hasn't had anything to eat (except via a feeding tube) for almost two weeks. This is a huge step that gets her a lot closer to getting out of the hospital!

No Go

No Chemo for me today. Between having a nasty little cold and my blood counts being in the crapper it just didn't make sense. I'm getting really anemic (hence the tiredness and the panting when I go upstairs), my platelets are low (no evidence of this yet), my white blood counts are low (probably the reason I came down with this dumb cold). I'm scheduled to go back in on Friday to get blood drawn again. I'm sort of hoping that we can just call it good enough and skip this last round of chemo. Right now it is just wait (rest up) and see.

In other news, after a rugged week or so, Keith's mom seems to be improving! There is even talk of moving her out of the ICU soon. She is in it for a long haul, but we're all happy that things are trending in the right direction. The crazy part is that they still aren't so sure about the underlying cause! There are a couple of possibilities, but her symptoms don't fit either one perfectly. Hmmm.

In search of Dr. House...

Keith's mom has been in the hospital since Saturday with some mysterious symptoms. The doctors just can't seem to figure out what exactly is going on. They've ruled out things like a stroke and Lyme Disease and they're waiting for some more test results, but still no definitive diagnosis. We're really wishing it were like an episode of House and we could fast forward to the part where Dr. House fixes everything. Please send good thoughts her way!

In other news... Keith and I went to see my breast surgeon today. We talked through a couple of scenarios. The next step is for me to get another breast MRI. He wants me to get this a week after my last round of chemo (hopefully that is next week). The scan will give us a very detailed picture of what is left of the cancer in my breast. The results of this scan will determine what kind of surgery my surgeon would recommend. If there is just one spot left, he'd recommend a lumpectomy followed by radiation. If there are two spots left (there were two spots visible in my MRI in January (before chemo)), he'd recommend a mastectomy. I just want to get rid the cancer that is left. I know the recovery from the mastectomy will be harder, but honestly I'm totally ok with that. I'm actually excited to get rid of this crap. Yes, I know there is probably more floating around, but anything I can do to get rid of it is good by me.

My surgeon also spilled the beans that my oncologist is leaving?!?!?! From the sound of it, he wasn't supposed to tell me, so I'll keep my trap shut and pretend to be surprised when she tells me. I don't know how I feel about this. I trust my oncologist, but she isn't the most warm person. The doctor I will be transferred to comes highly recommended and hopefully she is a little more personable, but no matter what change is hard. I'm just feeling happier than ever that I have my trusty second opinion oncologist at UCSF (hopefully she isn't going anywhere anytime soon!).

Wish me luck for chemo next week. At this point I wouldn't be at all surprised if my counts are too low for chemo despite all my bone soup!

Send good vibes up to Duluth for Keith's mom (and her doctors)!

Sorry for the Silence

It's been too long since I wrote one of these- sorry about that. Things have been rolling along here. I had chemo last week and I'm still amazed that my blood counts were good enough. I feel pretty good. I'm definitely fatigued this round, but I'm hanging in. Still managing to get out and go for a walk everyday. I'm looking forward to my last round of this chemo cycle. I know there will be more to come, but the break will be nice.

My doctors all seem to be on the same page about what comes next...surgery and radiation! Apparently they can do the surgery about 3 weeks after my last chemo and after that I'll start radiation. I'm still working out the details, but I expect that the surgeon will recommend a lumpectomy. If I weren't stage IV they would do a double mastectomy, but since the proverbial "horse is out of the barn" they'll skip that and do a quick out-patient lumpectomy. It's a strange thing to wrap your head around, but the fact is; cancer in my breast is the least of my worries. There are micrometastases floating around throughout my body and that's what I worry about. Spending a couple months recovering from a mastectomy is not something I want to do considering I don't know how many months I've got. I'm planning on having lots of months, but you never know with this shit. The lumpectomy should get rid of a lot of what is left and then radiation will hopefully mop up the rest.

This does mean I get to add yet another doctor to my repertoire: a radiation oncologist. Woo Hoo! The bummer is that radiation is a daily thing for 4-6 weeks. I wouldn't mind if it were happening during the school year, but from the looks of things it is going to tie us down for the first part of summer. Not ideal, but there isn't too much to be done about that.

I'll post more as the details become clearer but as it stands, this is pretty much the info we have to go on. As always, there's the possibility that the plan may change. I already have an appointment set to see my 2nd opinion oncologist at UCSF in a couple weeks.

good scan!

Hi, Keith here. E's oncologist is out of town, but we saw her colleague this morning to discuss the results from last week's PET/CT scan. We've had several days of nervous apprehension thinking about the worst case, but hoping for good news. The suspense was really getting to us but, thankfully, once the doctor walked in the door it was a mere seconds before she told us that things are looking good! The previous PET/CT showed some stuff in her chest, but that was from December's pneumonia and it's clear now. Her liver and lymph nodes are clear, and the cancer in her breast has mild uptake (that's a GOOD thing). Whew! It's going in the right direction. With this news, she'll continue with her current chemo cocktail. We'll be seeing her breast surgeon on Friday to get his take on the situation and hopefully get a better idea on how to proceed regarding if/when to have surgery. He usually does a quick ultrasound in the office which is helpful in tracking progress.

Eileen's port redness has returned and it looks to be getting a little worse again, but she says it doesn't really bother her. (I joke that it looks like she has a piece of twizzler stuck to her neck.) The doc checked it this morning and didn't seem too concerned about it at all really, so I guess it just is what it is until it either clears up again or gets bad enough to do something about. It was nice to have someone look at it again though, just to confirm that we needn't worry about it.

Eileen shared with me that she's been freaking out the last few days because her arm pits (read: lymph nodes) have been sore. She was concerned (convinced?) that the pain was an indication that the cancer had gotten another foothold. As it turns out, she realized that the new shirts she bought don't fit right in that area. Could be cancer.....or, just poorly fitting clothes. Argh! See what a mindfuck this is? It's so easy to freak about every little ache and pain! (Hell, I'm even doing it....oh and I swear I get sympathetic chemo side effects.)

Anyway, thanks for playing along. We're looking forward to some better sleep tonight.