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/

Round 12/2 is done.

I’ve now had 12 rounds of the 5 FU, irinetecan, Avastin regimen and in the last two oxaliplatin was added…It does make me MUCH more nauseated during the time of the infusion…I had to spend last night in the hospital to try to control the nausea….came home this afternoon…..TUmor markers are slightly up again, but all agree that it will take at least 2 rounds to see if my tumor is senstive to the added oxaliplatin….I got given a new home plan for nausea meds–but really the worst time is right around chemo time….It turns out that i have the gene that is suspectible for a drag called Erbitux–so if it seems like I won’t respone to oxaliplatin we will try that–it’s major side effect is a bad rash–so don’t be alarmed if you see me like that—with my already very thin hair, Decadron puffiness, etc……..

Jacob left for Peru on Saturday It was so sad and yet happy to see him so excited about living out his passions….He was truly wonderful to have home–fun energy in the house, and he was very solicitous of me. Often just sitting with me or going on short walks in the neighborhood. I feel so incredibly proud of him, he has turned out to be such a lovely young man–all that I could have ever hope for…..Yvonne spent the last 2 weeks the Children’s Environemental Health Intiative….a project out of DUke to examine many toxins and envirnomental issues that affect kids health, she may continue to work there later…..but tomorrow she leaves for D.C. her first solo road trip of any distance. She will be picking up her Mexican “sister” from the family she spent a month with last summer. They’ll be in DC for a week soaking up that city life and then come back for 3 weeks in NC.

That’s our news…..THe meals continue to be so helpful with the degree of fatigue and sometimes nausea I have….SO I especially thank you for those, and also all the expressions of support and love you have given me.

THANK YOU and Love to you too!

Family Vacation

We had a wonderful week in Woolwine. The four of us were together in a rather remote rental house in the Blueridge mountains. The house was great and it was close enough to Fairystone State Park that we could hop over there every evening to take our canoe out on the lake. The people in Cabin 8 at Fairystone were kind enough to let us leave the canoe there. (Cabin 8 has been our preferred choice for autumn outings for many years.) Pictures below are from the house, from the bench in front of Cabin 8, and from one of our favorite spots on the Blueridge Parkway.

Well, the house was great, but the steep gravel driveway and mountain roads were rough on our minivan. We wound up losing one afternoon to a failed transmission — had to get a tow to Christiansburg and rent a car to finish our vacation while the van got a new transmission. There was some mild panic in the air when we first realized we were stranded on a mountain road and Rebecca somewhat desperate for food, but very quickly someone stopped and gave us a ride up to Tuggles Gap, where Rebecca could get some enchiladas(!) and we could make arrangements for the tow. We got stuck at 12:30 and managed to make it back to the lake for our canoe ride by about 7:00.

After Josh spent Saturday going back up to Christiansburg to return the car and pick up the van, our attention shifted to Rebecca’s Tuesday chemo treatment, which included a new drug and therefore a new array of side effects. As it turned out (so far) the expected neuropathies have not been a big problem. The nausea, though, was pretty bad. We spent Wednesday morning back in the treatment room getting IV anti-nausea meds. This morning things seem to be under control, so we are hoping we can proceed now on what is now our usual routine. We’ll now be waiting as hopefully as we can for the next check of the tumor blood counts.

Houston: We have a problem

We sent films and data off to MD Anderson Cancer Center (in Houston) for a second opinion about the possibility of doing surgery or other procedures that might make surgery an option. The answer was a bit disheartening: there is too much tumor in the liver to contemplate surgery anytime soon. In order to get to that point, the chemo will have to do a much better job of shrinking the tumors. It is reassuring, though, to hear that our doctors at Duke are doing exactly what the experts elsewhere would suggest. We do appreciate the care and attention we’ve been getting from them.

We went for the tenth round of chemo on Tuesday. It seems like we have the right drugs to deal with the side effects for now, but we’re always on the edge for the first few days. The tumor markers are up slightly — not ballooning out of control, but the trend is clear enough that we have to try new drugs, which will bring new side effects. The next move is to add oxaliplatin, which means we are expecting neuropathies that make it painful to touch or eat cold things. The nausea may also be worse, so we are bracing ourselves for more struggles to find the right mix of anti-nausea drugs.

Tomorrow we’ll go for an endoscopy to try to identify the source of Rebecca’s occasional gastric pain and cramping.

Some better news: Jacob had his wisdom teeth extracted on Monday and is doing well. He has his plane tickets for Peru, leaving on June 28 and returning on August 26. Yvonne finishes her school year this week and has done great work. We are heading to a rental house in the Blueridge area in Virginia for five days of family vacation next week. It is near Fairystone State Park, our usual destination, but will be more comfortable than the cabins there. We are looking forward to some canoeing on Fairystone Lake, and some uninterrupted family time.

More news

The CT scan showed that the tumors haven’t grown or shrunk since the scan  6 weeks previously–  before that there was quite a bit a shrinkage.   So we will be adding Oxaliplatin to my chemo regimen and hoping that the expected neuropathy and possibly worse nausea will not be too bad and that there will be additional substantial tumor shrinkage.  I’ve still got a lot of tumor in my liver…..Hopefully, we can get the tumors to shrink enough that other modalities will be more effective when  we get to them.

All your thoughts and support are so appreciated.

Good news, bad news

All of my blood chemistries and cell counts are great–red cells, white cells, platelets.

Jacob is home from college and it is so great to have his wonderful energy in the house–and just the in and out activity.

Carol Ford hosted a lovely tea party in honor of my part-time tenure and also she sleuthed out that I am the first ever woman to be a full professor in our general pediatrics division–that one kind of surprised me…..The table linens came from her great-grandmother and the whole occasion was one I am sure she would have been proud of.

Nausea is pretty well contolled and I didn’t have a full blown migraine this last cycle…I think from rearranging meds a bit.   Round 9 of chemo is going fine so far.

I so appreciate all the emails, blog entries, letters/cards, visits, and meals.  You all are wonderful….

So the bad news,  my tumor markers are both up each of the last 2 times they were checked.  So we will be having another CT scan tomorrow to see what is happening with the tumors rather than just the numbers….It is likely that we will be switching some of my chemo therapy and will learn more about that next week.

 

Love to you.

 

Marching on

Another eventful fortnight for the Socolar girls: Yvonne went to the prom looking lovely and happy to have a break from studying. (See picture below.) She is taking her Spanish AP exam right now, with math and physics to follow in the next few days. Rebecca had a few days of headaches last week, but the nausea was under control. Our next move will be to consult with a neurologist who can help us figure out how all her drugs are interacting with her migraine condition. Round 8 is in process as we write — Leucovorin and Irinotecan are dripping in. We’ll try a slightly different way of tapering the Decadron this time and hope for a good weekend.

On a more positive note, Rebecca was granted tenure last week! We think she may be the first person at UNC to get tenure without ever having worked there full-time, so we feel like she has established an important precedent. When her grandmother Ruth left Congo, she was given a wooden elephant because, like the elephant, she had trampled a path for others to follow. We now have that elephant and Rebecca Ruth hopes she has cleared the way for others as well.

Things are better

Since things felt dire last week I just wanted to let you know that things are substantially better. Josh’s back is on the mend. He has been able to be at work most of the day each day this week–I think he is being reasonably careful…..
Jacob is out of the hospital…No definitive diagnosis. The necrosis settled at about 2×2 cm. After he was afebrile for a day he was sent home on Bactrim and Augmentin because they never got a bug, though almost certainly it was a bacterial infection. It started draining on Monday—so they incised it to allow further drainage, of which there was none….He spent 3 nights in the hospital and they were quite gruelling, but he has maintained the most amazing attitude….He is a trooper and an inspiration–just hope there are no setbacks now.
I am status quo….No more severe stomach cramps and no ER visits–am rejoining the world after my hospital chemo yesterday–I will get off the home infusion as usual tomorrow–after 48 hours. My blood counts were all good this time next time we’ll get tumor markers again.

Love to all.