Eating is Good

So through this whole thing I haven't had any appetite at all (a real strange thing for me!). Today I had the nausea under control enough (with an increase dose of Zofran) that I actually ate. Nothing huge, but I ate more than toast and crackers for the first time since Saturday. Between eating more and that extra Zofran I have kept nausea at bay most of today. I can't say the same for the diarrhea, but that is to be expected.

I think the reason this shit seems so hard is that I wasn't expecting it to be so bad. When I did chemo I was ready for it to be terrible. I read up and got lots of advice on how to deal with side effects. This time around the doctor wasn't even sure I'd need to take off work. I don't know if that's because people have such different reactions or because most people with Stage IV breast cancer aren't working or there are just so few people getting this dose of the drug. Whatever it is, I wasn't prepared and that has made it seem much worse.

On a positive note, it's very satisfying to cross off all the little pictures of pills and shots on my log! I'm more than halfway there on this round, and hopefully we can dial things in a little better the next time.

Keith's mom didn't get worse today so that's great news at this point. He's booking another flight to MN as I type. We're assuming that I'll be in much better shape after a couple days of no pills.

More than Half Way There!

I have passed the half way mark. That is something to celebrate because this shit ain't easy. I think a lot of it is because it is a trial- there is a lot of dialing in the dosing of the different drugs. I'm hanging in there, but it is a struggle. Last night I had the runs. It took Keith two hours to watch a one hour tv show because I was constantly running to the bathroom. I called the doctor and he told me to take Imodium every hour until the diarrhea stopped. I did that for three hours and it finally stopped, whew.

This morning I didn't have any trouble with nausea (thank goodness). Things went along pretty well all day. I just took a lot of naps because the anti-nausea meds make me really tired. By the afternoon I was feeling pretty nauseated and vomited a couple times. The doctor called (just as I finished puking) and told me to wait on my evening dose of Lapatinib and double up on my anti-nausea meds if things don't improve.

Update on Keith's mom:
There have been some ups and downs today, but in the end things are about the same. She is still in ICU. She is really frustrated and we're all frustrated and very worried about her. The doctors are doing their best, but many of her ailments remain a bit of a mystery.

Day One Down

I started the new regime yesterday and things were pretty smooth. I had a bit of nausea and a head ache, but nothing terrible. I even went a little crazy and organized all my pills for this round!

That all changed this morning around 6am. I woke up and was really nauseated and vomited. I went back to bed and waited until 7am and I still felt pretty crappy, so I called the doctor. He told me to take the anti-nausea meds and wait a bit. I did that and at 8am I tried to have some toast and water. I got one bite down and got sick again. Ick! I called the doctor again and he told me to wait a while longer and see. This time I waited two hours and I actually started feeling pretty good. I ate some more toast and took my morning dose of pills. I haven't talked to the doctor again, but I'm hoping he'll have some advice on how to avoid this happening again tomorrow.

The perfect storm:
Keith's mom had a set back today and is back in the ICU. Poor Keith is so torn, I feel terrible. As he was getting news about his mom, I was in the bathroom puking my guts out. What a crappy way to start the day. I know things can always be worse, but jeeze...

I am confident that things will get better. I just need to get my drugs dialed in a bit. I think I just went too long without any anti-nausea stuff. I'll talk it over with the doc later today and see what he recommends.

Epic Day

I'm done! Whew, that was a big day. It started off a little stressfully. I hopped on the BART and once the doors shut they announce that there are 20-30 minute delays. Urgh! That was just what I was trying to avoid. It turned out just fine because we weren't delayed more than 10 minutes and I had enough time to make it to my 8:15 appointment.

After that crazy start, things went really smoothly. Keith was very worried about the biopsy (and you can't blame him based on the last time when I spent a couple hours spurting blood on everyone!) but this one was much easier! My last appointment of the day was a lesson on how to give yourself injections. It was actually kinda fun injecting saline into the little fake belly they had.

I will start the Tykerb on Saturday, but there are some other medications that I am supposed to start tomorrow. The benefit of being on a trial is that the doctors have more of a vested interest in how you're doing (it really should always be this way). So the oncologist will be calling me a couple times a day to check up on me and make sure I'm managing the side effects (mainly the runs, ick!). Nice to know that if I have problems or questions it will be easy to get some help!



With all these pills that need to be taken on a schedule, I'm going to have to figure out a good system (and quick!). I'm good at remembering things once I get in a routine, but it is figuring out a routine that includes taking pills (and doing injections) at work that I need to work on. I'm gonna try setting alarms on my phone, we'll see how that goes... Wish me luck! I'm going to feel like a complete a-hole if I have to tell the doctor that I have the runs because I forgot to take my meds!



Last weekend Keith's old friend Tim came out to Oakland to work on music. They took a break from recording on Saturday and we went for a walk at the coast. I had to post this photo of Red, because he's looking so handsome (and well behaved!).

I'll keep you posted as I move through this first round. Hopefully I can keep the side effects under control and Tykerb does its job!

Update on Keith's mom:
There really isn't much to report here. There hasn't been any improvement despite a change in dosage. She's really getting frustrated and Keith's sister is rallying the troops and trying to organize a second opinion with a specialist at the Mayo Clinic.

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.