To be continued... the clinical trial drug!

Liz and I went to UCLA today and spoke with Dr. Ribas. He looked at her CT scans (I brought them on disk) and said they don't look good. Liz told him how much better she has been feeling. We pointed out that the first scan he saw was from 1/27, three weeks before she started on the study drug, and that during those three weeks she went downhill very fast in pain and mobility. It is possible that most of the growth shown occurred during that time. He felt we ought to have seen more improvement across the board, or in all areas of her body, so maybe the drug is only working for some areas; perhaps some are due to a different mutation. There is another medicine which fights at another point in the mutation cycle, MEK. This would be a plan B option. The fact that she feels so much better now is a good arguing point if Roche decides she ought to be removed from the clinical trial for her cancer progressing too much.

Dr. Ribas said Liz can pursue radiation for the cancer in her spine. She should stop taking her study drug when radiation starts and then start it again when it ends. The half life of the drug will not interfere with the beginning of the radiation cycle. He also said kyphoplasty is fine to do on the drug. These options are both on the table for dealing with the cancer in her spine and deterioration of a few discs.

We are relieved to hear she can continue on this medicine. I do feel strongly that Liz made great progress while on it. I have prayed that her doctors would be inspired in their treatments and recommendations for Liz. We know God watches over us and trust in His plan for her future.

One other small concern was a bump along Liz's jaw which showed up in the last few days. Dr Ribas said it looks like squamous cell carcinoma, a side effect for some patients. We tried to arrange to see Dr. Lo but he was unavailable today, and we leave tomorrow. We will try to arrange a dermatology consult and excision in SLC.
(The study "requires" the sample for testing and covers costs only if done here.)

We stopped at Diddy Riese for ice cream sandwiches made from cookies -- YUM! Liz can use the 500 calories; I don't need them but I enjoyed them too. We head back tomorrow midday, after we turn in our laughable rental car. I saved some money but Liz wishes I hadn't... the Suzuki firenza is a gutless econobox. Whatever. We are just spoiled with using Val and Brent's much nicer car the rest of the time. :)

Happy Birthday Liz - in the hospital for MRI

3-27-2010

When we got to the hospital yesterday we heard we had to admit Liz in order to get her into the schedule for the MRI. So we sat around while paperwork was done. The Air Med team came and got her IV line in quickly and gave her a hat for a birthday present. Then we waited for her MRI, which happened at 2:45pm and takes 90 minutes. Dr Donegan came and said he had seen it even before she returned to her room. He said there are compression fractures in discs T3, T6, and T11. There is tumor mass in the spinal column as well. Since she doesn’t show any signs of immediate danger to her spinal cord with symptoms like headaches, numbness or tingling in extremities, difficulty walking, loss of bladder or bowel control, he feels she can leave safely. He said only moderate activity and no heavy lifting. (That is what we have been doing.) We hope to have other doctors see her scans and add their expertise.

Dr Donegan said one possibility is injecting a substance between discs to keep them from compressing more – called kyphoplasty. I looked it up. [Pronunciation: \ˈkī-fō-ˌplas-tē\ Function: noun : a medical procedure that is similar to vertebroplasty in the use of acrylic cement to stabilize and reduce pain associated with a vertebral compression fracture but that additionally restores vertebral height and lessens spinal deformity by injecting the cement into a cavity created in the fractured bone by the insertion and inflation of a special balloon] – from Merriam-Webster online medical dictionary.

We don’t know whether to stop the study drugs, which seem to be helping, in order to start radiation, or try to continue. The decision may be up to Dr Ribas in LA. We go Tuesday for a Wed. appointment.

We got to Provo late for our dinner with family but enjoyed good food at Brick Oven. Then we had talking and game time at the Cedar Circle house with a few visitors. Afton and Madison did a great job with decorating and making delicious cupcakes! It was nice to have Liz feel a bit more normal. We got home late – about 11:30pm – and she opened a package from Jimenezes and a card. I think she felt loved. :)

Saturday I made cupcakes and ran around cleaning up for an open house. Liz was happily surprised to see so many neighbors and ward members. I told her “They love you!” We so appreciate your continued prayers on her behalf. Liz went shopping and out to dinner with JD’s parents Saturday too.

I hope to get copies of some pictures from family who had cameras.

CT scan on 3/25

3-25-2010

Dr Grossmann called about her CT scan today. It shows significant growth (double or more) in liver and bones of back and pelvis. Other areas are lessened. Maybe she can’t be called “stable” and enable her to continue with the study. He did ask radiologist to amend report to indicate bleeding as possible in liver. “I wish she could stay on the drug. She seems to be benefitting from it… I thought before it was worth it to wait on bones and continue study; now I don’t feel that way.” Two discs are compromised and there’s a compression fracture. We need to see with MRI if spinal column has soft tissue damage. He wants her admitted to hospital to get MRI of spine. I asked him to call Brad to tell him too.

[One concern I have is that her last CT scan was 1/27. She didn’t start the study drug until 3 weeks after that on 2/17, so tumors had time to grow quite a bit. That period was when she had big changes in how she felt. Even though this scan shows some tumors growing a lot, it could have been happening that long ago and now be slowing or stopping. We can’t know for sure.]

Liz should decide about the hospital. I asked if we could bring her in Saturday so she could have a normal birthday tomorrow – she had plans for dinner and visiting – he thinks that is too long to wait to get started. He said getting an MRI would be easier with medication to help with discomfort or maybe apprehension; MRI takes longer than a CT scan. It will be easier to have a radiation oncologist, surgeon, and osteo specialist involved if she is admitted.

She is likely to need surgery or radiation of bones asap. Surgery would mean 7-10 days in hospital. Radiation was not supposed to happen while on study drugs; it multiplies effects, at least on the skin.

Dr Grossmann called Dr Ribas for input – he still wants to see Liz next week (wed appt). IF B-raf study isn’t allowed due to cancer progressing, she may be able to get into another one: MEK (?) – similar mutation blocker. Dr G will email some still shots from scan. I will take disc of CT scan with me.

Liz wants another opinion. --We will get doctors from U of U hospital and perhaps from an IHC hospital too, to see scans and offer opinions.

Questions: Can we still do TIL cell treatment? Can tumor be harvested here instead? Start growing cells if possible. Can they freeze it or ship it fast enough?
Brad’s wish: stay on meds another cycle, still do TIL harvest and grow cells, THEN chemo & reinject.
Will do: Go in Friday morning for Air Med team to do IV, then MRI. Still go to Provo for bday stuff. See or hear results and go in Sat. afternoon if need to be admitted.

Lines down and out! It's a good thing.

Liz went yesterday to the Huntsman center and got her Hickman line out. It was convenient when she needed IVs or blood drawn, but she will be glad not to need the lines flushed every night with saline and heparin. So will I, as I did that part.

Liz was a little apprehensive at first, since the last "simple procedure" involved cauterizing with shocks. After a minute or two she was calmer and did great. Breathing calmly helps. After numbing the area - prick and stinging - all Dr. Scaife did was put in some scissors next to the tube, then open them slightly to enlarge the opening enough to get the cuff of fabric out. (There is a cuff on it so the body has something to hold onto and keep the line in place.) Then she just pulled the inner 8 inches of tubing out while keeping pressure on the vein up by Liz's neck, until it clotted enough to close. She just has a steri-strip over the small hole and it will seal up fine.

Liz is happy to think of showering without having to tape on plastic over her line, and to be able to raise her arms above her head more easily without it pulling. She has been feeling much better lately, and went out to dinner last night with JD for a burger and fries. Life is good!

She has had some swelling in joints - from knuckles to wrist, shoulder, hip, ankles - which occasionally makes it harder to move. She feels better, even if she is under 98 pounds. We try to fatten her up and she eats as much as she feels she can.

"Feelin' Stronger Every day..." and a crash.

We returned from another trip to UCLA on Tuesday. Liz had two appointments on the 4th and 8th. She is feeling better and stronger. She has more energy and can eat more, and moves about more easily on her own. She has been on the study drugs for three weeks, and started the second cycle. She still takes morphine twice a day and oxycodone a few other times and in the night. Her body has been doing better at processing food, although she still is not eating as much as normal. She weighs 98.8 pounds now, and we think there may still be some waste to get rid of, as her stomach still feels hard sometimes. She gets cold often, as you can see from the picture on the plane.

Side effects - skin rash is present over nearly all her body. She has a red patch on her wrist that has now become thickened and rougher (since Monday when we saw a dermatologist). We have prescription creams and hope they will help ease discomfort and lessen the rash. The rash typically goes away after another 3 weeks from now, we hear. Liz also has joint pain, currently in her right wrist and index finger.

Her back pain is still there. We also mentioned that her vertebrae look different and had two doctors look at them. There may be some breakage from metastasis, making them stick out further. Because she is feeling better right now we won't worry enough to involve an osteo specialist; likely that would mean getting a brace, according to Dr Grossmann. We have a CT scan coming up in about 12 days, before the next visit to UCLA on 3/31.

Today we noticed new freckles on Liz's face - tiny ones, they just weren't there before. We may start taking weekly pictures. We are also trying to note location of pain daily.

CRASH - On another note, Rachel and Jill had way too much excitement when they tried to drive home last Friday 3/5. Jill was driving and the car hit some ice or slush in the HOV lane in Salt Lake. The car spun around and was hit in the driver door by a truck pulling a horse trailer. Jill had a 3 inch gash on the back of her head and was unconscious for a few minutes. Rachel had back and pelvis trauma and pain. Both kids were uninjured. Jill and Rachel both went to the U of U hospital to be checked over. Jill was released with stitches and/or staples, and she and her kids went home Sat or Sun with her sister driving halfway. Ben drove down Friday and Rachel was released from the hospital Saturday afternoon after her contractions lessened. They drove home Tuesday to Washington after Rachel was feeling more mobile. Their car (Ben's first) was totaled, and will need to be replaced.

We are just very grateful that it wasn't much worse, with two pregnant women and two children. Brad was there for Rachel when I could not be. The most frustrating part was that Rachel was strapped on a board and in a neck brace by the ambulance crew, then not allowed to move for 5 hours, causing her pain. This was due to lack of communication between the OB and Trauma departments. When they finally let her move, much of her discomfort left too. She is still very sore and will move slowly and carefully for a while, and is on Lortab.

We are grateful for blessings! We know the accident could have been much worse. We are glad to have family around to help and to visit and uplift us. God gives us what we can handle... sometimes we wish He didn't think so highly of us. :) We are so fortunate to have Val and Brent welcome us to their home in North Hollywood and loan a car for our use. We enjoyed watching the Oscars with someone who knows the business and voted. I loved getting to hang out with Val, buying fabric, going to church, pulling weeds, playing games, whatever. It's all fun and we love getting together.

Free at Last!!!

In spite of Senna-S twice a day and a second shot of Methylnaltrexate, Liz had not pooped for 12 days when we took her to a digestive health center in Ogden. Fortunately Brad managed to get her a same day appointment on Tues 3/2 before we would leave Wed. The doctor said there were good sounds in her bowels, and the X-ray showed her colon was full but her small intestines were good.

He said use double the normal dose of Miralax (over the counter med) powder dissolved in liquids both morning and night (so four times normal each day), which can help put liquid back into stools to make them easier to pass. Liz has been using less of her narcotics for pain too - she takes the morphine for long term release and much less oxycodone - since they remove moisture from stools. After taking some miralax that night, she did get fleet results. She eventually got to the diarrhea stage on Thursday, so we are backing off on miralax, and continuing with Senna-S. You don't know how much we take the body for granted until it doesn't function as we expect.

Liz has been eating much better too, now that she feels like food has room to move. She has eaten more fruits and vegetables to help add fiber, and Thursday night ate a small piece of cheese pizza. Today (Friday) for lunch she had clam chowder and some fruit. Life is good. She gets around much more easily by herself as well due to lessening pain in her spine, and she is feeling stronger and more energetic due to eating more food.

A few side effects of the study drugs are the rash as previously mentioned, and also joint pain that seems random. Today her right shoulder, wrist, and hip hurt a bit. She has had knuckles swell and turn a bit red too, and her ankles got sore. In general she feels much better since taking the study drugs beginning Feb. 17th. It is amazing how much of a difference there has been the last two weeks.

We enjoy staying with Val, Brent, and Stillman here in North Hollywood. There home is beautiful and their hospitality so gracious. We eat well and drive their cars. (That has gone better this time too. We left at 6:50 Thursday and voila' - real freeway speeds on part of the journey! ) Thursday night we played 5 crowns, a card game, and then Missionary Impossible, which finally ended. I liked how players can lay down trial cards for each other, and the only way you can get rid of them and be able to continue playing is to add the blessing card on top. When we count the blessings the trials shrink before our eyes.