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