One long day

We’re blogging in real time here.  Rebecca is sitting in a lovely recliner in the chemo treatment room.  The nurse just arrived with a slew of tubes to fill with blood for tests associated with the investigational drug we were supposed to start …. but it turned out yesterday that we can’t get on the trial.  We are just here for a short infusion of Avastin.  Long story short:  the CT scan from last week showed that the tumors are actually a bit smaller than they were in early October.  That’s good!  But in order to get the investigational drug your tumors have to be getting bigger; you have to be “progressing” as they say in mildly annoying medical lingo.  The puzzling thing is that Rebecca’s flank pain has been getting a bit worse, which makes us feel like she should be eligible for the study, but we understand from the scientific perspective why there have to be strict rules for eligibility, and from the economic perspective why the company who makes the drug doesn’t want to pay for extra people to get it.

So the plan now is to get higher doses of Avastin and take Tarceva orally, hoping that will keep the tumors at bay if not shrink them a bit. 

OK, we’ve cleared up the snafu with the blood work.  Now it turns out that the Avastin was not prepared because they had not realized our oncologist wanted a higher dose.  More delays.

Just got the results from the blood drawn this morning — not so good, the tumor markers are up substantially.  Does that mean we could actually get on the study?  If so, we can’t do the Avastin now.   Another two phone calls to the doctor.  Answer: No.  They need radiographic evidence of progression, and the study just closed anyway.  So we’ll do the Avastin.  Here comes the nurse practitioner to help us feel OK about our options.

After going over a number of scenarios, we’re back to the Avastin-Tarceva plan.   We’ll keep an eye on the numbers and switch to the more aggressive combination of Vectibix (rash) and Irinotecan (nausea) if we have to.  We’re hoping to make it at least through the holidays before we do that.  More later…

Back home after choir practice — a wonderful diversion.  We’re working on a Haydn mass.  Rebecca took an oxycodone, as recommended by the nurse practitioner, to help control her flank pain and help her sleep.  Yvonne is putting the finishing touches on her college application.  Any college that turns her down is totally bonkers.  So a tumultuous day is coming to a peaceful close. Good night.

Plans for now

When we saw the oncologist the PET scan results sounded a bit less dire. It is not at all clear that the lung lesions represent metastases and the liver is fairly similar to the scan in May except on PET only 4 big lesions show up with metabolic activity. Many tens of lesions appear to be dead for now.

After lots of discussion and a few false starts about exactly which studies I am eligible for and when we can start we are planning to start on a phase 2 trial with Vectibix (standard next line of therapy) and an investigational drug AMG 655 on Nov 11. I will likely get a bad rash on my face and trunk with this and other side effects are possible….I am hoping not too much nausea or migraines. All this is assuming that the mild flank pain I have been having doesn’t worsen in the next 3 weeks, which if it happened would indicate that the tumor is growing too fast to wait to be on this study. I will try to enjoy the next weeks as much as possible, but unfortunately often find myself feeling very anxious and not really present in the moment….I will continue to work on that….

It has been really wonderful to have Jacob home this week. He heads back to school tomorrow. His botflies are well resolved now. THis time he had a lesion on his arm that was biopsied for leishmaniasis but seems to be turning out to be an indolent Staph infection. Yvonne is very busy with school and her activities. Yvonne had her own medical excitement….a cut on her finger from a test tube that took her to the ER. Josh is wonderful (but always juggling too much).

Love to you.

Scan news

We’ve got some results from Thursday’s PET/CT scan. We’ll need to talk to our oncologist to fully understand them, but here is what we can tell from the radiologist’s report: Some of Rebecca’s liver lesions are slightly larger and show high metabolic activity. Both lobes still show some disease. There also seem to be some new nodules and a “band” on her lung near the major fissure.  So we are concerned, but not ready to leap to conclusions about the next treatment option.  More on Tuesday after our oncology appointment.  In the meantime, we’ll be enjoying a family weekend including Jacob’s arrival for his fall break and a Saturday night concert including Yvonne’s choral and a capella groups.

So many choices, so little time

We met with the oncologist today. My tumor markers are up again so it is time to change therapy. I will have a PET scan Oct 9th and based on that they will give us recommendations. It seems likely it will be one of 3 possibilities–1) Vectibix and Irinotecan, 2) Tarceva and Avastin, 3) Sir spheres (radioactive beads that are injected into the liver). Of these #1 is still very nausea producing, #1 and 2 produce a very bad acne rash. I am going to try to live it up until my scan on the 9th.

Love to you.

Brief update

When you hear from me it is much less entertaining than Josh’s blogs.

Cancer news: Both tumor markers were up slightly this time….We are still figuring out what this means, but likely a change to a new drug regimen and hopefully one that is less nauseating, but we shall see….The nausea seems worse this go round, but I am getting through it…

Other news: We had a lovely celebration at our house of Josh’s 50th and our 25th anniversary……Thank you for all the good wishes in person and otherwise.  Yvonne is getting heavy into college applications and has decided to apply early decision to Swarthmore.  Jacob was home for about 20 hours for our celebration, it was great to see him but of course too short….He is still having complications from his last remaining botfly…any botfly experts out there?? otherwise it is all on student health at Swarthmore and a worried mama.

The meals you all have sent have made a tremendous difference and still do– especially in the first week after chemo…..THANKS so much for that.

Love, Rebecca

Silver sliver

Today is our silver anniversary! Chemo is limiting our partying today, but we’ve had a few moments to reminisce about the places we’ve lived and visited and the great times we’ve had as a family. We’re looking forward to a more festive celebration when Rebecca feels better.

We’re up in the hospital this morning after another round of the hard stuff. Rebecca was knocked out by Ativan for the night, which helps. The routine feels familiar now, but it is still uncomfortable. The medical news is pretty good! Both tumor markers are down substantially from last time. The plan now is to go ahead with another treatment in two weeks, and maybe one more after that. Doing too many of these treatments runs the risk of more serious and long-lasting neuropathies. The next move will be to get another CT scan and then see whether we can keep the tumors under control using a maintenance regime of Avastin and a new drug called Tarceva.

Yvonne is getting into the swing of a new school year. She is taking a math class at UNC, working on college applications, and starting up with her singing groups again. We’re hoping there’s some fun in store for her this year. Jacob returned from Peru, but only reluctantly. He came face to face with a jaguar, removed botfly larvae from his abdomen, dealt with intestinal parasites, spilled battery acid down his back, bathed in a lake full of pirhanas and caymans, and worked hard on a research project on plant diversity — and he can’t wait to go back. Rebecca delayed her chemo for a week so she could feel better for the few days that Jacob was in town, and it worked! She was able to drive up to Philly with us to see his dorm and meet two of his roommates (nice “kids”).

Happy Holiday!

Rebecca took a holiday from chemo this week so she could be feeling OK for the few days that Jacob is in town. It has been great to have Jacob here since Tuesday night and to have Rebecca feeling much better than any time since January. Our plan is for her to accompany me driving Jacob up to Swarthmore this weekend. Here is a picture of the recently returned jungle boy with mom and sis:

Jacob, Rebecca, Yvonne

One more holiday note: Labor day weekend (actually Sept 3) is our 25th anniversary. We’ll celebrate a bit later. We get back from Swarthmore Sunday night; Josh teaches on Monday; and Rebecca goes for her last hard-core round of chemo on Tuesday. We’ll post more news about what comes next once we have a scan and a plan. We wish you all a great holiday weekend!

Going for platinum

After her name was called at hospital admissions yesterday, Rebecca was forced to wait 7 hours before beginning her routine, finally getting underway at 9:00pm. Her performance was excellent, nevertheless. Buoyed by the news of low scores from her last event, which the judges found encouraging, she felt better about executing her oxaliplatin routine. We’re hoping to see a new record low score in a few weeks. Here is a picture of the molecule that makes this event so difficult. The prized metal is the light blue Pt in the middle.

Rebecca wins Platinum

OK, enough with the olympian attempt to push a metaphor way too far. We were indeed encouraged by lower tumor marker levels. We were also extremely frustrated by the long wait to be admitted to the hospital and get the chemo started. We’ll spare you the details. The change in routine was due to the fact that insurance companies won’t pay for both outpatient and inpatient services on one visit, so we were not allowed to have the chemo in the usual place given that we knew already we would be staying overnight in the hospital. We hope to go home this afternoon, but much depends on how long it takes for Rebecca to feel like the nausea (which will surely come) is stabilized. Right now she is sleeping, having been on strong sleep-inducing drugs overnight as part of the anit-nausea regimen.

News flashes from the past two weeks: Yvonne — went to DC; saw Marisela off; worked in Lemur Center; saw the Perseid meteors; needs to sleep. Jacob — still alive, having a great time; saw his first jaguar. Rebecca/Josh/Yvonne — had more wonderful visits from Rebecca’s dad and from friends; enjoyed more delicious meals delivered to the door and created for us in our kitchen.

How low can we go?

The numbers look good this week!  Both tumor markers are now lower than they have ever been since the chemo started.  We’ve got two more treatments to get them down as low as possible, then Rebecca will switch to a maintenance regime that should allow her to recover more strength and generally feel better.   The treatment on Tuesday went as planned — just three hours later.  We had to wait a long time to find out that there was no bed available up in the hospital and we would have to have the treatment done down in the clinic, which is what we wanted in the first place.   (It’s all about the insurance and whether the clinic will get paid.)  Fortunately, a bed finally did open up and Rebecca spent the night in the hospital, with Yvonne staying in the room to keep her company and make sure the medical team did things right.   Yvonne actually did help in the middle of the night when Rebecca was too drugged up to answer some questions coherently.  We’re back home now and Rebecca is doing well.  The neuropathy from oxaliplatin is getting worse (cold sensitivity, as expected), but it seems worth it when we see the marker levels drop.

Ray (Rebecca’s dad) has been visiting for a week.  He’ll head back to Tallahassee on Monday.  It has been a very nice visit, as we’ve each had some good discussion time with him.  Yvonne and Marisela have had quite a schedule of museum visits, dance lessons, social events, and even a Durham Bulls baseball game.  The news from Jacob is that he absolutely loves Cocha Cashu — army ants, bot flies, and all.

Up and Down

Down: Rebecca is up in the hospital again to try to control nausea.
Up: The reason is that the tumor markers are down.
We came to the doctor today worrying that the markers might be up again and we would have to change drugs, but it turned out that they were down substantially — back to the levels we saw in late May. So we are continuing the FOLFOXIRI program, which is pretty tough but at least we have the sense that it is doing some good. The plan now is to do a total of 6 treatments and we’ve just done the third.

Rebecca has been doing OK, but still never feels really good (i.e., normal). She takes a walk of about a mile each day, but that is about the most she can manage. We drive to downtown Chapel Hill or Carrboro occasionally for a bite to eat or just to sit and see new faces, and Rebecca can make it on her own to some doctor’s appointments and to work in her clinic for a couple hours every other Thursday. When we have visitors, Rebecca often has to lie on a couch or excuse herself to lie in bed for a while. In general, though, the distractions are helpful.

For the past week we’ve enjoyed having Yvonne and Marisela (her friend from Cuernavaca) with us after they spent five days up in DC with Josh’s parents. Marisela’s first full day in the US was spent seeing the mall on July 4, fireworks and all. We hope Chapel Hill is not to much of a letdown.

Marisela and Yvonne in DC.

We also had a great visit from Christian and family. Thanks to Jon and Barb and to Christian and Laura’s help with meal preparation, our job as hosts was very easy. We loved having all the kids around, seeing the pool put to good use, hauling out the building toys (mostly to amuse Will, Ben, and Uncle Josh), and having some extended times for Christian and Rebecca to talk together.

News from Jacob is sparse but good. He had a successful birding trip up high (15K ft) and made safely down to the jungle where he is helping with field work on a plant diversity project and possibly getting started on a project of his own on the Wattled Jacana, a bird that lives in the oxbow lake visible in the image below. Zoom in and out to get a sense for where Jacob is spending July and August.

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Also check: www.duke.edu/~manu/