End of February

Rachel has come to visit us for a week or so - which was a lovely gift. She drove down here Thursday the 25th from Washington with her cousin, Jill (Harris) Springer and her two children. Jill's mom, Cindy, just had back surgery so she is happy to have visitors too. Rachel looks like she really is pregnant now. Liz has been sleeping with Rachel, which means I get to sleep with Brad again for now. :)

Friday we went to the doctor, because Liz had some persistent hardness in her abdomen which sometimes was painful. Dr Grossmann feels it is due to trouble with her bowels. She hasn't eaten enough hard foods to really need to poop. Also, morphine and oxycodone, both narcotics, tend to make the intestines stop doing their job of moving food through. We used a shot of methylnaltrexate which helped move gas and relieve pressure. (We will probably do that again.) We also added Senna-S to her list of pills to take, which stimulates the bowels.

As a result, Liz has been trying more foods, with mixed results. Friday night she had peanuts, popcorn, and some muffin! She has more of an appetite but some foods still don't stay down. Today she had some mini wheats cereal and milk, very slowly, a few strawberries, some smoothie that she said was too sweet - then the liquid came back very fast when she moved to try to get ready for church. We stayed home.

Liz also now has more redness and visible rash, especially on her face and neck, and forearms. She puts lotion or cream on it often. Her joints in various places hurt more, currently both shoulders, left wrist, fingers on right hand, and ankles. Both rash and joint pain are side effects of the study drugs.

We return to Los Angeles this week on Wednesday the 3rd and come back the ninth. Liz has appointments on the 4th and 8th. After that, she won't need big blood draws. We have an appointment to get her Hickman line taken out on March 19th.

We thank you all for your support and prayers and faith on behalf of Liz. She has been looking at dresses and hair ideas in a bridal magazine - Brad bought it for her. You gotta love a man who thinks like that.

98 pound weakling

When we were in L.A. we got Liz some morphine which helped a great deal with her pain. Liz has been sleeping fairly well, either sitting up against pillows or even lying down again, although her back usually hurts more afterward. She feels pain in her right shoulder, and her left wrist is getting sore from doing more of the weight shifting work. She has some pain in her abdomen where her liver and spleen are, and also lower below her navel.

Since last weekend, Liz has been drinking juices and some milk. She has eaten some soft fruit like mandarin oranges from a can or strawberries or bananas. When she has tried a few bites of cereal in milk, chewing very carefully, it has come back up. She had the second liter of saline on Monday morning after she vomited from too much water at once (about 3 oz.)

It has been frustrating to see her begin to get more food down then not keep it down. She has had mixed results with milk products too. She gets tired of applesauce and strawberries after a few days. We tried chicken broth and then chicken noodle soup and again have mixed results. Some tastes just get old quickly. We do smoothies twice a day or so, changing the flavors, and Brad has bought lots of various drinks - gatorade, SoBe, Fuze and other juices - to tempt her.

Yesterday we did another shower and Liz weighed 100 pounds, back up from about 97 or 98 I think. (She kept very little down on Tues-Fri last week.) Her appetite is slowly returning but her stomach is still so touchy. She can't overdo it with cold or heat, or volume. Liz felt hungry enough to try apple cinnamon oatmeal, then a couple hours later we tried egg/bacon/cheese omelet. That was a bad idea and it all came back. She gets so discouraged when she gets sick. It hurts her back and abdomen every time too, causing more pain.

This morning (Thursday 25th) Liz had a tiny portion of Rice Krispies and milk, some apple juice (too strong) and then some smoothie about 1:30. We take it a little at a time. She has had some low fever (about 99 or 100 degrees) and some rash, an expected side effect from the study drugs.

Thanks for recent notes and short visits. Just remember she is now sensitive to light and sound as well. :) We appreciate your support through all this!

IV Saline is in

Saturday, Feb 20, 2010

Liz had pain meds at 215 and 730, then drank too much water at once and vomited it. That hurts so much. We took her downstairs and started a liter of saline. Being novices and because the nurse said she didn't know how fast it would go, she had 3/4 of it in her within about 20 minutes. Then we slowed it down. :) Brad watched her while I went back to bed. Liz even sounded better when I returned - her voice has been so frail and soft. She has still tried to sip fruity juices and water. Her temp is about 99.4 degrees.

She has tried a little smoothie and a tiny bit of milk to neutralize the acidic stuff. So far so good. She kept study drugs down this morning as well.

She has more localized pain on her right side, where her liver is. We hope it will dissipate soon. Heat has helped.

2-18-10 9:40pm

Today we flew home from L.A. via Phoenix. Liz took her clinical trial meds at 8am then vomited 40 min later when I helped her get dressed. I estimate about half or a bit more of the meds stayed down. Other than that she didn't vomit, but only tried sips of clear liquids, including sprite, some snapple juices and water. She just started taking the study drugs for this evening. Her morphine has helped with pain but makes her very sleepy and causes difficulty focusing eyes or thoughts at times. She also noticed sensitivity to light and sounds. Today she also had 5mg oxycodone a few times for pain with traveling on roads and in planes. She seems very glad to be home.

I am very encouraged that she could keep liquids down today, even a minimal amount. We are hoping the study drugs will stay down more easily tonight and from now on. I sleep with her in my bed so I can respond quickly if she needs meds or liquids or just comforting.

Brad, et al: As I understood Dr Ribas' info about PTN (IV nutrition): Liz is unable to eat food right now because of the cancer metastasis. Her liver and spleen are under attack and stressed by the cancer in them, so they are less able to help break down food. Forcing IV nutrients into her will just overload them more and cause more stress on digestive process organs. He said we need to treat the cause of the inability to eat, which is the cancer, using the study drugs, rather than trying to get food down that will just overwork those organs. As long as she keeps hydrated and can keep most of the drugs down she will improve and become able to eat. (There was more to it than that, but that was the gist of it.) We will keep a very close eye on her, as Brad said to Dr Grossmann.

2-19-10, 10am

She kept all the meds down last night. I got her in bed by 1030 and settled by 11. She stayed propped up on pillows as that has helped her sleep better these past several days. She woke at 2 am and we adjusted heat and support. Woke again about 6 to tell me I was talking in my sleep. :) Up to bathroom at 8:30 and did swish and spit med for thrush. Then started taking study drugs (slowly, a few minutes apart) at 9. No problems yet with nausea as she has kept still too.

11:30 am

Her pills have stayed down, and Liz has started to drink juice. She revels in sweet flavors after only water for so long. There is joy in the simple pleasures. :)

Tracy

ECGs and bumps along the way...

2-15-10

This morning Liz tried an Ensure on the way, and vomited as we arrived at the airport at 6:20 am. Luckily we brought extra pants, and a jacket. She changed in the car and we washed them later. Liz and I made it to Los Angeles after a delay of an hour in Oakland. It was harder this time than last with two flights to get to Burbank. We go back by way of Phoenix on Thursday.

Liz has had much more pain lately, and needs help moving most everywhere. She has trouble eating, feeling nauseous and reacting to heavier foods, then even to milk products. She tries to keep liquids down and eats like a mouse – applesauce, dry cereal, fruit (especially strawberries), a bit of chicken. Meat sounds too hard to eat. Since Friday Liz has had a swollen tongue on one side. We thought she reacted to a very acidic kiwi (like I now do eating fresh pineapple), but it hasn’t gone away. It makes it hard to swallow at all.

Val brought us home from the airport and we ate a bit then napped. I also showered. J Today Liz has eaten a bit of pop tart, a bite of graham cracker, a little serving of applesauce, a couple of blueberries, a little orange juice (6oz) and some ginger ale, soy milk chocolate 4 oz, and even a few small bites of chicken enchilada, mostly after we got here at 3pm.

2-16-10

Liz slept sitting up against some pillows and seemed to do better than lying down. We still used the heating pad too. We set alarms to get her medicines in less than 4 hours and it helps too.

Driving to UCLA was very slow as freeways are more like parking lots here. J We took over an hour to go 23 miles, but we did find it just fine. The office was packed with people, due to the Presidents’ Day holiday. Liz started her ECG (they still call it EKG) at 10:14am so we will end up doing the last one early before the last nurse leaves at 6pm.

We also told them about her tongue/throat situation and Dr Ribas came out to look at her and talk to her. He said maybe some lymph nodes are swollen and putting pressure on her nerves; then he borrowed a flashlight and said she has thrush. (She had it in the hospital before.) He prescribed a swish and spit med called Nystatin. He also heard about her pain getting much worse and called Smiths’ Pharmacy to talk to them about what the insurance will cover (instead of/before oxycontin). He has been on a trip but was concerned they didn’t just give her a different medication than was prescribed. “She shouldn’t be in so much pain.” She has taken one morphine pill which has made her sleepy. They told us it would take several hours to take effect for pain. We are grateful to Jackie for asking him to see her today (unscheduled) and that he got us meds to try right away. We also know Jackie has ordered pills to be ready tomorrow morning so Liz can start on them asap.

Liz has eaten some applesauce and some chocolate soy milk. Dry stuff hurts too much right now. We thought about stopping at Diddy Riese – they sell cookies/ice cream sandwiches there. We opted to head home more quickly. J

She is really tired, probably because of the morphine. Her back did hurt quite a bit after lying down on the bed at the clinic for 90 minutes. She feels every bump, every bit of braking or acceleration. I try to make it as smooth as possible in stop and go traffic. She ate some cereal and might be good for more.

Back to L.A. after Valentines Day

L.A. here we come again!

We got the word Thursday night the 11th that the Lab in CA had confirmed that Liz has the B-raf mutation from her tissue samples. The slides sent over the weekend were stained and others were immediately sent to replace them, and the test only took two days. We had already scheduled Liz for the testing needed.

Liz and I will head to Los Angeles on Monday for two days of ECG testing on Tues and Wed. We will spend the days there because she needs to have leads on and readings taken every two hours for eight hours. Blood will be drawn at those intervals too. I think we will bring some movies or books for passing the time.

Liz has been feeling more pain lately. Her left hip has hurt since Sat or Sun and gotten worse. She uses her heating pad and pillows and wears her pajamas rather than pants. She moves pretty slowly when getting up or sitting down. She also has had trouble (still) with nausea and vomiting. She stopped taking her marinol (for appetite) because she thinks it was making her sick when she took it before eating. That seemed to help for a few days. We got more antinausea medication too. Most of the time she seems to be in fine spirits, but pain takes its toll. She sleeps in bed with me so I can help her if needed. She takes a higher dose of oxycodone as needed.

We have high hopes for this clinical trial drug, shown to be 80% effective at reducing melanoma tumors and the pain they cause. Liz will start medication on Wed. Feb 17th. We are hoping pills are not a problem - at least they are not injections. :)

This past week we were blessed to have Saralyn Campbell and her two children, Emma and Thane. We loved seeing them and playing with them. Sara made us some fantastic dinners and goodies, and helped with cleaning and dishes, organizing, and massaging. She went home just in time for her own birthday!

Phil arrived from Arlington VA/Washington DC on Tuesday. His was one of three flights out of Reagan airport that day, then it closed down due to more snow. Phil came to meet and interview with some local law firms, contacts of our good neighbor, Jon H. We are hopeful that he will find a summer internship (even better if it pays) so they can come live near family for a few months. We would love to have time to play with Amy and Liberty and Phil.

We are grateful for faith and prayers offered on behalf of Liz and all of us. We trust God to do what is best.

B-raf Positive!

Good News!
Dr Grossmann said the test done at Huntsman indicates Liz is B-Raf positive! Now we just need to get the tissue samples sent so the lab there can do the same test, then she will be officially in the study. I would love to book plane tickets but I will wait a bit longer.

Dr G will also check why tissue sent "overnight" with dry ice arrived three days later in poor shape.

To answer a question: Medicine will be 4 pills taken in the morning and 4 at night, at home. :) We like that part. No IVs.

Quick trip to L.A.

2-4-10 Los Angeles, CA Airport LAX

We met with Dr Antoni Ribas (originally from Spain) today at 100 Medical Plaza at the UCLA hospital area. He explained the need for a good tissue sample to confirm Liz has the Braf indicator on the genes. Tissue sent from Huntsman was not frozen so it wasn't useable when it arrived. Grr. They will need to send more from the same biopsy if they have enough and it isn't stained, OR we will need another sample. Hopefully there is enough tissue at Huntsman to send immediately to begin testing, which takes 3-5 business days. Once she is proven to have the Braf indicator she is officially in the study.

The next step is to have 5 ECGs done in an 8 hour period, every 2 hours. Then they can begin treatment. She can do ECG then day 1 of the first cycle the next day, so it will be a 2 day trip next time. After that it will be every 22 days she will return for blood samples, ECGs and there will be other tests/scans as needed. We need to get her started within a 28 day window from her last scan on 1/27 or else she will need a new scan.

The treatment works like this: Genes in the cells tell cells to grow and reproduce, then normally they also tell them when to stop. Braf is one of the mutations in cells which turns on growth of cells but doesn't turn it off when finished as normal. (Others are Ckit and Nras) IN young melanoma patients, 80-90% have the Braf indicator. This drug targets or blocks the Braf mutation. It is 80% effective. Eventually the cancer finds another way around the blocker. While it works it reduces pain and the size of the tumors. She can keep taking the medication as long as she wants or as long as it is working. There is a person who has taken it for 14 months now.

We are very encouraged that she will be able to do this study. We feel very blessed for Brad's work at researching alternatives, and for Dr Samlowski helping to get Liz considered quickly as well.

Another good note: JD was hired by Varian as a glass assembler, making them for X-ray tubes. This will mean a raise in pay, and hopefully good insurance fairly quickly as well. We are excited that Brad could find him a new job.

We are also so grateful to Val, Brent and Stillman for welcoming us into their home and beds for the time we were here. It looks like we'll be returning regularly. It has been lovely to get a little warm weather break, even if just for a day. (60 degrees is warmer than Feb in Utah!) Brad did the driving and his iphone helped very much with maps and directions. J

Love, Tracy

PS – we came home to a different house! Some loving angels came and cleaned our messy kitchen and dining room. THANKS!!!