April radiation to come

Liz and I went to see Dr. Bauman, a back surgeon, at the IHC clinic in Salt Lake on Monday. He looked at an MRI of her spine and said that if she were a little old lady with osteoporosis, he could help her with kyphoplasty. We could see the discs T3 and T6 were gone. T11 was only a small wedge shape left, tipping a bit toward the spinal column. He explained that putting the acrylic cement in only works when there is enough bone structure for it to adhere to. She has more curvature of the spine at the area between her shoulder blades and just below. IF she experiences any more extreme pain like she had between January 30th and February 20th, she should come right in and stop further breakage. We were disappointed but better educated. He also said if she falls or picks up something heavy she will break her back.

Later we asked him about getting her a back brace to help stabilize her spine. Dr Bauman prescribed one for her so we may get that. I think as she travels in a car or airplane especially she may be glad for the extra support. She feels every twist and turn, deceleration, and bump. The pain is much better than in February.

We also met with Dr Ying Hitchcock, a Chinese lady who prefers talking to listening when it comes to dealing with patients. She agreed to do radiation on Liz's spine and both hips over the week of April 12-16th, rather than the standard two weeks, because we have planned for Liz to go to UCLA for a clinic visit then go to WA to see her sister Rachel's new baby boy. It also will mean she is only off the clinical trial drugs for 5 days instead of 12. (We were so glad she can just take a break and get right back on them. If we had known this in Feb. we would have done things differently too... 20/20 hindsight.) Liz has a few more black tattoo dots to mark her body for those treatments.

Liz has begun to drive a little, using the Suburban or my car as they are easier to drive than her car with no power steering. She likes feeling a little more normal and free to go as she pleases.

We loved having a quick visit from my sister Karyn, Andre' and their kids over Easter weekend. We enjoyed hearing messages of hope and faith in Christ as we celebrated his Atonement. We rejoice in His love and trust in His power and goodness.

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.