Denisepdx's Journey with Liver Cancer

Family/Friend: Liver Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 5 years ago, Female, Age: 23

  1. 1
    almost 5 years ago
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    Diagnosed

    Oh No

    Our daughter, an otherwise healthy, beautiful and vibrant young woman was diagnosed with primary liver cancer the week she turned 18. Background: She had been experiencing pain, on and off, for almost two years. She described it as pain on her right side that radiated to her back and up to her shoulder. She went to her pediatrician many times, but she couldn't find anything and referred her to an orthopedist, who in turn referred her to a physical therapist - thinking that it may have been an injury from playing tennis. She also went to see a doctor of osteopathy a few times. Unfortunately, during this time, no one did a scan or an ultrasound, only an x-ray, which didn't reveal anything. It wasn't until last June when she could actually feel a bump below her sternum that she was taken seriously. A CT scan followed by a liver biopsy revealed she had Hepatocellular Carcinoma (HCC).

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  2. 2
    almost 5 years ago
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    Internal radiation

    Radiation

    August 2011 - Following the work-up appointment, with only 4% shunting (leakage), our daughter had her first Yttrium-90 (Therasphere) radioembolization treatment at OHSU

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    almost 5 years ago
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    Internal radiation

    Radiation

    September 14 - Second targeted radiation treatment of Y-90 (Thersphere) radioembolization.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    almost 5 years ago
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    Internal radiation

    Radiation

    9/28/11 - Third Yttrium-90 (Therasphere) treatment to the Right lobe. Each treatment to the right lobe has been through a different artery (she has three going to her right lobe). Billirubin (indicates how well the liver processes bile) which was at .5 prior to treatment, was at .9 following her first treatment, and down to .7 before this third treatment. She has tolerated these treatments well.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    almost 5 years ago
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    Internal radiation

    Radiation

    10/27/11 - Fourth Y-90 treatment, only this time to the left lobe (this is the lobe that is providing good liver function.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    almost 5 years ago
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    Cancer is shrinking

    Celebration

    10/27/11 - Full CT scan of chest and abdomen. The chest looks fine (no spread) and the tumors they've treated are shrinking! Also UCLA Medical Center is reviewing her records and would like her to come down for an appointment. In November we went to UCLA and met with Dr. Bussutil and he wanted her biopsy looked again (each doctor suspects the liver cancer to be the fibrolamellar variant , which is very hard to diagnose). Four different pathologists have now reviewed the the slides from the biopsy and all have concluded it is primary liver cancer HCC. We left with the understanding that if the tumors continue to shrink and die from targeted treatments, Dr. Bussutil could at a later date perform liver resection to the right lobe, but he was also very complimentary of Dr Orloff at OHSU, near to our home. Plan is to continue to treat the left lobe and go back and treat the right lobe at least one more time. In the meantime our daughter recovers after each treatment and if you were to meet her you'd never guess she has advanced liver cancer.

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  7. 7
    almost 5 years ago
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    Targeted therapy

    Drug or Chemo Therapy

    12/5/11 - Fifth treatment, this one is chemoembolization or Trans Arterial Chemo Embolization (TACE) . They’ve soaked microscopic glass beads in chemo for a couple of hours. They are, as we write this, “depositing” them through a catheter into the right lobe of her liver. The worst part is the six hours after treatment that she can't move her leg or raise her head more than 30 degrees (which goes to show that the treatment itself isn't all that bad, sometimes she says she feels fine as if they hadn't done anything!) With her doctore we looked at the images taken today. He showed us the difference between the CT scan done in August and today. The right lobe, the one they’ve been treating has shrunk by approximately 50% (to put this in perspective the right lobe mass of tumors were over 17 cm in width and now they are less than 11cm, which is an imperfect measurement, but gives you a sense of what she's battling). We can actually see part of the right lobe now. The tumor in the middle, the one between the right and left lobe has also shrunk. The liver has moved over to the right side, almost back to where it is supposed to be. The tumors on the left have not changed much. The biggest one, on the left, used to be 2.3 centimeters, it is now 2.4 cm. This is a sign that the treatments are working. We discussed the use of Sorafenib (Nexavar), a drug that was discussed with the oncologist at UCLA. Our doctor indicated that it has been discussed in the tumor board meetings and that he’ll bring it up again.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  8. 8
    almost 5 years ago
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    Targeted therapy

    Drug or Chemo Therapy

    12/30/11 - Our daughter's doctor cut his vacation short so that he could perform the TACE (Transcatheter Arterial Chemoembolization ) procedure on the upper part of the left lobe of her liver. This date was decided on so that she could enjoy some warmth and relaxation next week in Maui with me. After her typical overnight stay at the hospital she was home for New Year's Eve and had friends over, with the drugs she was on she didn't remember much of the evening afterwards, but we did enjoy 10 lovely days on Maui!

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  9. 9
    almost 5 years ago
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    Allergic reaction

    Side Effects

    1/19/12 - She started taking Sorafenib (Nexavar) when she returned from Maui and within four days of taking it she began to experience periods of chills alternating with fevers. Her lips were purplish blue and her feet and hands were cold to the bone (even while wearing Uggs slippers!). The next morning we had a scare when her fever registered 102.8 degrees. As a precaution her doctor wanted her to come into the hospital. They ran many tests and did find that her white blood cell count was elevated, as was her bilirubin to 1.0 (from .5 a week earlier), but didn’t find an infection so sent her home. It was decided to postpone her 7th treatment. The next day her tongue became very sore and painful, making it hard for her to eat or drink and then on Saturday she developed an all over rash on her face extending to her ears and back. She discontinued taking Sorafenib, was given a topical steriod for her rash and gradually (just like we were told) the side effects went away. At a later date she may try sorafenib at a half dose, but for now her doctors will continue with the targeted therapy (TACE and Y-90 radiation).

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  10. 10
    almost 5 years ago
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    Targeted therapy

    Drug or Chemo Therapy

    February 2012- Two more TACE treatments were done in this month (7th and 8th treatment). They partly done so close together as our family has a trip to France planned for March.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  11. 11
    almost 5 years ago
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    Cancer is shrinking

    Celebration

    3/6/12 - Two days before our trip our daughter had another CT scan. Her doctor called delivering positive news that’s always nice to share, her CT scan showed no spread outside the liver and all treated tumors have responded well to the treatments. He indicated that the CT scan looked even better than the images they see during treatment. The mass of tumors taking up the right lobe are less than 30% their original size, all tumors treated within the left lobe are dead, and there is just one more tumor to treat that is located between the right and left lobe. It has not materially grown (or shrunk). They will treat this tumor when she gets back from France and Spain. They are currently planning the liver resection of the right lobe in early May, unless another treatment is deemed necessary.

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  12. 12
    almost 5 years ago
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    Internal radiation

    Radiation

    4/6/12 - 9th targeted treatment. This was the 5th Y-90 (Therasphere) radioembolization.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  13. 13
    almost 5 years ago
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    Decision Point

    Not really our decision, because we were waiting on the decision of her surgeon and the liver tumor board at OHSU. Following another CT scan on 4/30/12, the multidiscplinary liver tumor board met on 5/1/12 to discuss our daughter's case and reached consensus to go forward with liver resection surgery of the right lobe and one segment on the left (in total segments 4, 5, 6, 7, an 8 will be removed). Surgery is scheduled for Monday, May 7th. Last summer this was not an option as the tumors were too numerous and too large. After surgery segments 1, 2 and 3 of her left lobe will remain or about 35% of her liver. Her liver will then regenerate after the sugery. We are excited and anxious.

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  14. 14
    almost 5 years ago
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    Partial liver removal

    Procedure or Surgery

    Our daughter had 70% of her liver removed and the doctors are optimistic. A week after the surgery she had a CT scan that revealed they were able to remove all of the tumors and one that was treated with RF ablation during surgery is completely zapped. There were two drains (chest and incision cite) placed post surgery and after these drains were removed another drain had to be placed into the abdominal cavity to remove fluid (doctors have told us, 'this is not uncommon'). All in all her doctors indicated that the surgery went better than they had expected. After 11 days in the hospital she should be coming home today!

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  15. 15
    over 4 years ago
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    Finished treatment

    Celebration

    Surgery was a success! They were able to remove all of the cancer. It is likely to come back, but doctors have also told us they can treat or perform another surgery.

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  16. 16
    over 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    While it isn't 100% confirmed that the cancer has spread. Doctors have indicated it's a 9 in 10 chance that HCC has metastacized to the lungs. A follow up CT scan revealed one 5mm nodule in the lungs and about two to three 1mm nodules. She will have surgery to remove the 5mm nodule and they will biopsy it to determine if it is indeed hepatoma. Her doctors have also initially indicated that if it is hepatoma they may want her to try Nexavar (sorafenib) again at a lower dosage. The good news is that her liver looks fantastic, even though 70% was removed her liver has regenerated; the liver resection surgery effectively "reset" the liver. And further she's had a wonderful summer with more plans ahead, one being to go on a cancer survivor camp on Maui for surfing and standup paddle boarding with other survivors. All around being able to live the life of a teenager.

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