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 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

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. :)

MRI - good news!

Dr Grossmann just called and said the MRI shows the brain is still clear of cancer right now. The skull area is larger than before, so radiation to only the part we knew of would not have gotten all the cancer. I asked if more radiation would be done to get the edges and he said probably not, as it can damage the center area if it is done twice. The epidura between the skull and the brain has shown changes too. He hopes that this will still mean Liz can enter a trial in which the clear brain scan matters.

Brad has done constant research and emails with melanoma experts around the country, including Dr. Wolfram Samlowski, who used to work at Huntsman and is now in Las Vegas. (He met Liz three years ago.) Dr. S has asked his colleagues about getting Liz into various clinical trials. I am so grateful for Brad's persistent research and for people like Dr. S who care about getting her the best chances.

Her radiation is scheduled to start on Monday 2/1 at Huntsman. It may be delayed a week if needed.

There is a clinical trial in Los Angeles which closes Feb 6th, using a drug called CTLA4. It has shown remarkable success in treating melanoma. (I think it was 70% successful...? I will check.) We are likely to drive or fly her there either Wed. or Thurs. to get her entered in the study. One detail is that good tissue samples are needed for study. The doctor there, Dr. Ribas, is also a surgeon and might be able to excise the lump at her back easily for more tissue to study if needed.

I feel at this moment that we have a good outlook with a chance at good medicine, and that radiation soon can help alleviate her discomfort from bone pain in her spine. She is taking ibuprofen to keep pain manageable now.

The NIH study with TIL cell harvest and reinjection may still follow. I don't know how all these studies affect what else can be done or when yet.

We are so blessed to have support and love from so many! I am so grateful for calls, emails, meals, visits, and especially faith and prayers on Liz's behalf. Thanks so much for lifting us with your love and service and faith. God is mindful of each of us.

1-29-10 Cancer has spread

Liz had a chest, abdomen, and pelvis CT scan Wed the 27th, difficult in part because she couldn't keep the barium whatever contrast down. She drank the clear kind and did fine.

Today the 29th we met with Dr Grossmann to hear results. He said and showed us that cancer has increased, in many areas. The interleukin-2 did not work for her. No more treatments will be done - that is the good news.

The existing lung tumors have grown, the second from 9mm to 25 mm.

New tumors are evident in many areas:

She has a tumor in her spine in vertebra T11, 12.4 mm, about 10 mm from the spinal cord. She had noticed back pain the last 3-4 days. She also has two smaller tumors in the right femoral neck, the part that goes in her hip socket area. These bones can become weakened and can cause a pathologic fracture - if she stepped off a curb wrong they could collapse suddenly. Radiation to these bones will start on Monday Feb 1st. There is also a small tumor in disc L4 in the lumbar region, smaller at this point.

She also has a 25 mm (1 inch) tumor in her spleen and a 16 mm tumor in her liver, and several smaller ones both places. Thus far no problems and she mentioned only sporadic pain on the spleen side, "like a stitch in the side from running" but when she is sitting still. He did not indicate treatment for these multiple tumors in soft tissues.

She has an MRI for her brain Sat the 30th at 9:45am. We hope skull cancer is at least limited to the area it was before. [side note: this week she has lost nearly all the hair in that spot on her right side of the skull, about a 2 1/2 inch circle) and her upper hair covers it from view. It is sensitive skin there.]

Liz also noticed a bump on her back, near the spine, that can be felt through the skin.

Dr Grossmann has called the National Institute of Health (NIH) in Maryland to see how quickly they can get her in to their study with harvesting TIL cells from tumors, then growing them to reinject to fight cancer. He predicts she can get in within about 14 days. Harvesting from either of the two lung tumors or the bump near the surface on her back should not be too difficult. It may take a few days to recover from lung surgery. Then Liz would come home. They try to grow the TIL cells (to billions) and it takes about 3 weeks. They would call to tell us if it worked (50% success rate), then she would return for a strong dose of chemo (the kind that makes you lose your hair) and the injection of TIL cells. She'd be in the hospital for about a week in intensive care. TIL cell treatment is 50% effective, so overall that has a 25% chance of helping her. Brad tells me that if her MRI shows cancer in the brain it would exclude her from this TIL cell treatment study.

Other radiation to deal with tumors in soft tissues would follow. Brad feels strongly this could be done sooner to halt growth and we are considering working with different doctors who would treat more aggressively. We also hope to get antibodies treatment.

Meanwhile, we worry about Liz's drop in weight and appetite, and will try some medications to help that.

None of this was expected, and it is hard to hear and to understand. We want so much for our lovely Liz to have opportunities to grow and enjoy her life. We so appreciate the prayers and support we receive from friends and family and total strangers, near and far. We don't know God's plan for us. We trust Him to lead us along. We hope we learn what we need to learn quickly. We want to do the important things. Thanks for your help, everybody.

Tracy/Mom