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.
Sunday, January 31, 2010
Friday, January 29, 2010
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
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
Sunday, January 17, 2010
Purpose
This blog is about Liz, my beautiful daughter. She is battling melanoma, stage IV, which means it has metastasized into distant tissues. I know that having the support of many who care about her gives strength to deal with the hard times.
Liz originally had a mole removed from her back, near her right underarm, in Sept. 2006. A month later she had surgery to remove surrounding tissues and lymph nodes there and in her neck. She had a month of interferon treatments to boost her immune system to fight the cancer. We chose not to do the follow up shots (weekly for a year) so she could get back to life as a high school sophomore.
Then we had CT scans every 6 months, then 12 months, to see if any abnormal growths would show up. In October 2009 we learned she had a nodule in her right lung. She was referred to Dr. Kenneth Grossmann at the Huntsman Cancer Institute in Salt Lake City. He asked about getting her a brain MRI as well and it showed a patch of cancer cells growing in her skull just above her right ear.
Liz finished her first semester as a BYU student a week early. She is deferring her scholarships until her treatments are done, since taking interleukin-2 (IL2) makes the brain not function at full capacity. Liz wants to go into genetics and biotechnology, to kill cancer. She could do wonders, I have no doubt. She is a National Merit Scholar and very bright. (No, I am not just saying that because I am her mom.)
Her first IL2 treatment began December 7th and went well. She received 9 doses of the IL2, the usual amount, over four days. They test her daily for neurotoxicity by asking her questions and having her do dot-to-dot pages. She got more sick and less interested in food, and slept much more. That's when they stop treatments. She went home 12/18 and enjoyed seeing family and celebrating Christmas. She developed a blood clot from her PICC line that first time. We gave her blood thinner shots for a month (through last Friday, 1/15).
The second treatment began Jan. 4th, after she had a Hickman line put in. It makes it easy to administer IV drugs and fluids and to draw blood - an important bonus since she has no needle access on her right arm due to no lymph nodes there. This time her fluids were managed better and she gained less water weight. (During IL2 the body's capillaries leak fluids, then when treatment stops, the kidneys and liver try to catch up.) She had 8 doses this time, and went home Friday Jan. 15th. Her weight came right off, and she seems normal. Her skin is dry and peeling.
This past week she had radiation treatments Monday through Friday, outpatient. They are now over. She may have some hair loss at the spot where her radiation targeted the cancer. She now has two weeks to recover and hopefully gain more weight before the next round of IL2. She should be going in the hospital Jan. 31st and starting treatment the next day. We have a scan on the 27th and an appointment with the doctor on the 29th.
We have been blessed with love, prayers, and help in many forms. Thanks for your concern for our beautiful Liz.
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