8 turned to 12 spots in brain

Today we heard Liz will wait until tomorrow to begin the SRS treatment, partly because Friday's MRI showed 12 brain lesions where before (5/5) there were 8. It makes the planning more complicated. She will begin Tuesday at 11:45 and go again on Wed at noon. Both times they hope to treat 6 spots, taking about 90-120 minutes each day. Dr. Tward and the nurses want to be sure she can lie on her back for that long comfortably. She took 90 mg of morphine sulfate on Saturday (instead of 60) morning and night, but went back to normal on Sunday. She also took some oxy to keep it manageable. Today at 3 she hadn't taken any oxy yet. She did say the numbness had spread around her calf a little more today (not what we hoped).

We focus on what we can do. We can get treatment for 12 spots instead of only 8 we knew about before. We can get radiation done and then begin BRAF drug again after some time off.

We also got a reminder call about an appointment she had for tomorrow to get the rest of her squamous cell carcinoma removed from her jawline. It turns out they need her for 2-6 hours, so we said not tomorrow. We need to do the SRS and will get this in two weeks on June 8th. It may take that long because they remove only thin slices of skin at a time, check for the cancer, then go back for more if they see it still there. I had thought it was a one time deep spot removal. I suppose I should have asked questions long ago when we set up the appointment.

Today Nell helped Liz clean much of her room. It looks amazing! Liz said she mostly supervised and made decisions. :) I was gone for a while to remove my personal things from school, and tell them I don't know when/if I will be back. It is more important for me to be available for Liz, and the ladies I worked with all understand that. I appreciated their hugs and concern.

Lumbar tumor, treated with Radiation

From the MRI yesterday, we learned Liz had a tumor growing in her lumbar 3 disc, which is putting pressure on nerves to her leg. (Other discs also had growths. We also know the wedge of T11 is still there.) We went to Huntsman for planning and immediate radiation treatment, a one-time dose that should kill the tumor. Hopefully it will shrink quickly as it grew, and relieve the pressure and pain. (Dr Tward said 50% shrink and 80% have less pain.) Liz has had a lot more pain just today than before and took oxy (2 or 3). She has been nauseous as well. Dr. Tward said if he had done a five day dosing it would have a 10% chance of returning but with the single dose it has a 17% chance. It can be treated again later. This area was NOT treated in April's radiation (even though small tumors were present), because they don't want to irradiate too much of the bone marrow at a time.

Liz stopped BRAF drug (last dose Th night) and we feel fine about its interaction with the radiation today. Any skin burn/rash won't show nearly as much on her low back and belly. By Monday's SRS on her head, she will have been off for 3 full days, almost 4. It also seems to matter more how much she has right after radiation, when its effects are highest.

I told Liz I think her leg pain/numbness has been a tender mercy, even if it doesn't feel like it. By learning of this pain Th night, we added the MRI of her lumbar the next day, and got it treated the second day. Perfect timing. It is hard to think of it being good when she is feeling so sick and in pain. Her shoulder pain was probably due to the Zometa and is waning.

We had an extra adventure on the way to the hospital today. We decided to take the suburban so Liz could stretch out better (sitting hurts more than lying down or standing). As we stopped in SLC the car died. No power at all. We pushed it around a corner, and Brad fiddled with scissors and got the battery connected again. A few blocks later it did it again. We got it going, and duct taped the scissors in place to get the rest of the way. Brad dropped us off and went to fix the problem. He got back soon enough to get a tour of the various X-ray machines in the radiation oncology department - fun for a guy who works in that field. :) We were very pleased with the care Liz got and especially that she got in so quickly, on a Saturday.

SRS machine is fixed, and numbness in her leg

Dr Chris Anker has called us daily with updates on the SRS X-ray machine, and we heard this morning it is fixed. Yay!!! We have an appointment today for MRIs: to map her brain for SRS treatment on Monday and Tuesday, and also her lumbar spine area.

This week Liz has had pain in her left hip, thigh, and knee, getting lower and somewhat stronger daily. She has stayed horizontal on the couch with her leg elevated to ease the pain, and she takes her morphine and ibuprofen for it too. We figured it was from her Zometa infusion Monday.

Then last night (Thurs) Liz noticed she couldn't feel the heating pad on a portion of her lower leg, just below the knee on the outer front. She said it feels like pins and needles around the numb area. We know numbness and tingling are signs of possible pressure on her spinal cord, so there was a flurry of emails and calls this morning. So today she will get an MRI of her lumbar spine area too, to see if there is something new there. Liz also said she felt a bit less pain over the last few days in her lower back. She thought maybe the wedge that was left of T11 disc finally collapsed and thus hurts less (and it could have moved toward the spinal cord too).

Liz slept in her back brace to help keep things straight. She will wear it more often now, I think. She has started the steroid again for swelling, and is off her BRAF drug today so she can do SRS treatments.

We feel so glad to hear her SRS treatment will happen soon, despite Dr Shrieve and Dr Anker being out of town next week. We are grateful for the support of so many!

SRS delayed - machine is broken

As I think I wrote before, the X-ray machine used for SRS treatments has been broken at Huntsman for over a week. They got a part from Germany on Friday and hoped it would be fixed by Monday. No such luck.

Liz went yesterday to do the SRS planning MRI at 2pm. Because Liz had no success Friday with the IV, we were asked to get the IV line in at Infusion, who sent us to the blood lab nurses, who asked for the doctor who ordered the line, and we waited a while. Then Dr Anker called and said not to do the MRI because the SRS machine is still down. He was apologetic. He suggested Liz gets back on the B-Raf drug and then we can do the SRS when the machine is back up.

I don't like having her go back on the study drug if they might get it working in a day or two, as she already was off it for 5 days. (Dr Ribas said 4-7 days off, before and after radiation.) I asked if she might get treated elsewhere sooner. He said she could go to IHC / IMC for treatment. That would start with a consult appointment, then their MRI, then they use the "halo" to hold you still. (My word; he said pins, which are screws that go into your head. I saw the metal halo frame on TV long ago.) When Liz heard this she said she wanted to wait for the Huntsman machine, so she can do it with the mask instead.

Liz's veins looked good because she drank a lot all day Sunday, and a nurse there said she could do her infusion of Zometa now instead of on Wed, saving her a trip later. We got the infusion and Liz was glad to be done with that. Now we just hope the machine will be up and running shortly because the longer we wait to get the brain tumors the more radiation it will take. They are very small now - the biggest was about 1/2cm x 1 cm on 5/5 - and we'd like them treated asap before they grow much.

So she took a half dose of her study drugs last night. We hope the machine will be fixed and she can quickly get treated with less time off drug again. It is a guessing game we don't like to play. We want her to benefit from study drugs and not miss taking them for long; we also want to minimize effects of radiation on her skin/scalp when she is treated. Please join us in praying for those who can fix the machine to do so promptly. Thanks.

Tracy

SRS approved and a wedding date

Hurray! We got approval from the insurance company for SRS treatment, Tuesday morning. We opted to go on our scheduled trip anyway, as we were about to walk out the door.

We asked Dr Ribas at UCLA how long to be off of the study drugs before radiation this time. He said on Tuesday 4 days, then Wednesday he said Roche (drug company) says 7 days. (Grr.) The half life of the drug is two days but it takes longer to clear it from the body if you have taken it longer. They also say 7 days after radiation is when to restart the study drugs.

We drove back from CA with my sister, Val. (We hope to hear Val and Brent's daughter, Cambric, will have her baby any day now.) Liz slept some and read some. Val did most of the driving. We got lots of time to talk. :) We like how smooth and quiet her car is, and its great gas mileage. It was fun to see Afton, Stillman, and Brent there too. Matt drove us home from Provo Th. night. We were amazed at our very clean house - those angels dropped by again. :)

Friday we went to Huntsman early to meet with Dr. Anker, a young man (looks like Matt) who works with Dr. Shrieve, regarding SRS treatment. He took more pictures of Liz's skin since some were out of focus last time. We also found out the big X-ray machine there hasn't been working; a part was flown in from Germany and they hoped it would be running by Monday. We still have priority but it may not happen until Tues 5/18 or later, due to backlog. Then we went upstairs for an MRI - to plan the SRS procedure. Liz came back in tears; they couldn't get an IV in, so no MRI was done. She was likely dehydrated. (The same fellow who got her IV in one try last time did three tries without success.) We go back Monday (today) for another try. Liz has been drinking a lot of liquids.

On a positive note, we have a date for Liz and JD's wedding: Saturday, July 10th. We'll try for a reception the night before, so she won't be worn out with too much happening on one day. We look forward to a very busy 8 weeks of anticipating, planning and arranging. Liz and JD have worked on getting ready for the temple endowment before the wedding. We don't have a date for that yet. We bought a beautiful dress the previous Saturday, May 8th, in Provo. So many of you have already offered your help, and we promise when we get a minute to breathe we will figure out how to let you. :)

We saw Iron Man 2 on Saturday, and enjoyed it. (I had my earplugs in.) Liz spent a little time out and about and got sunburned lips and nose while trying to stay out of the sun. Little adjustments are necessary. We planted a few vegetables and flowers. Life goes on, and we make the best of it. Thanks for all of your support!

Mother's Day week - SRS?

Dear family and friends, (newer below)

Wednesday 5/5

Today Liz had a brain MRI and CT scans of her torso. We saw Dr. Grossmann in the afternoon. Here is the good news: According to the CT scans, many of her tumors in her liver, spleen, and lungs shrank over the past 6 weeks. There were a few that stayed the same size, in her lung and bones.

Bad news: there is a new one (small) near her right kidney, next to the muscle wall by the hip flexor.

All this would indicate that the B-RAF study drug is still working on her soft tissues, and that the Zometa infusion may be helping to stop cancer from destroying bone any further in her spine.

Dr Grossmann said he felt good about the results from B-RAF based on this much information. He hoped the study would allow her to continue. Then he went to get MRI results.

Worse news: When we finally did get results from the Brain MRI, it was not good. There are 8 small tumors in her brain, in various different places, above her nose. Any brain cancer removes her from study medications because it isn't allowed in the study to have cancer in the brain, and because treating the brain becomes top priority. Usual treatment is radiation. The B-RAF makes her extra sensitive to radiation too, so that's another reason she can't do both at once.

Normal treatment of small brain tumors is either whole brain radiation (avoiding the eye area) OR stereotactic radiation surgery, or SRS, where tumors are targeted from all possible angles very specifically. At Huntsman they are very aggressive at this, but the upper limit of number of tumors in the brain is 7, one less than what Liz has. SRS would involve one treatment of the many tumors on one day. Hair loss would be minimal. It also may well leave behind smaller invisible tumors. Whole brain radiation would involve treatments over 15 days (3 weeks of 5 days) and she would lose all her hair. It would blanket the entire area and presumably kill tiny tumors too. She would feel much more fatigue and need more time to recover from that much more radiation.

It is possible that after radiation Liz's brain might become "stable" - no new tumors growing, and get rid of existing ones - and after a period of time, perhaps be allowed back on the B-RAF drug.

We are, as always, looking into other treatments:

-MEK (another mutation blocker, like the B-RAF but farther down the line of cell development),

-Young TIL cell harvest/transplant (multiplying of own targeted white blood cells and then give massive dose of chemo (hair loss), then reinject those cells to fight cancer)

-CTLA-4 (vaccine I think; I can't recall its specifics)

-any palliative treatment, to improve quality of life.

Brad has worked tirelessly to research these areas and knows more than I do.

This was hard news today. We all cried a bit. Liz then turned to comforting JD and us. She asked the doctor if she should not plan on going back to school in the fall, and he paused then said "Yes." He added that if school is a goal she wants to work toward, and friendships there are important to her, and if going would be uplifting for her spirits, go ahead. He also said that when he first spoke with us, her life expectancy was probably a year or less. (She had not heard this before; we never asked.) He said now he might expect "months" left. I know hearing this was shocking for her and is hard to accept. We don't have to see it as fact. We aren't giving up. We can keep working toward treatments and even a cure. We may get to enjoy Liz for many years. We love her and hope and pray for her comfort and healing.

We ask for your continued prayers and faith on her behalf. Our ward had stake conference last week with 60 stakes in Davis and Morgan counties, so we have fast Sunday this week. I have asked that our ward fast for Liz. JD is also asking his ward to do so again. If any of you would like to join us we will appreciate it.

Val, I don't yet know if we will still come on Tuesday. It may be that we need to go before "exiting" the study, and if we do so, we may be a little more likely to be allowed back into it later. I will let you know when we do. Right now Dr Grossmann was planning to contact Dr Ribas to confer about Liz.

Thanks to all of you for your support.

This is Liz's neck and upper chest, with the shadow from her chin. The black spot in the center is a marker for aligning radiation treatments.

5/8/2010 Saturday

On Friday we went to see Dr Shrieve (radiation oncologist) and Dr Jensen (neurosurgeon). They originally said we would do a brain MRI to map where stereotactic radiation would be done. Then they said we won't do that until it gets approved by our insurance. We discussed the difference between the SRS and whole brain radiation. WBR kills whatever is there at the time, but if the cancer is moving there from elsewhere in the body, then it won't keep that from happening.

SRS would only get rid of the lesions we can see right now. It won't kill tiny tumor cells we can't see yet. It can be done again. These doctors asked about Dr Grossmann's recommendation to do SRS because of skin reactions to radiation. After discussing it, Liz showed them the patches on her back and chest, red and brown and peeling with some rash bumps. Those look rather unusual for radiation treatment. Then we also said it is worse on her hips, where it is purple skin and was extremely rashed and irritated. Seeing those areas, they were so surprised they asked to get pictures. They also felt these pictures would help insurance people see what kind of reaction she has that they deem SRS to be better that whole brain for her situation. We are hopeful that we will hear from insurance that the SRS will be approved soon. If we hear by Monday we may get treatment done midweek, then head to UCLA either the following week or three weeks later.

Liz feels fairly good. Her pain has been manageable. She and JD want to get married as soon as possible. We are working toward that goal, probably between mid-June and mid-July. We have hope that with these 8 brain lesions treated, and B-RAF continuing to help her others, she will still feel good. She may continue with school in the fall at BYU.

Thanks for all your love and prayers and support. We feel it. :) --Tracy, Brad, and Liz