Susan_Steel's Journey with Skin Cancer - Melanoma

Survivor: Skin Cancer - Melanoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 12 years ago, Female, Age: 59, Stage IV, BRAF mutation positive: Yes, c-kit positive: No

  1. 1
    over 4 years ago
    Susan_Steel's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    No big deal. Have had it in for two years. Should have had it done sooner and would have saved my veins!

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    over 4 years ago
    Susan_Steel's Avatar

    Laser surgery

    Procedure or Surgery

    7 Stereotactic Radio Treatments (Laser Brain Surgery) on Brain Mets between Dec 2009 and Oct 2012 at Rush Medical Ctr in Chicago under Drs. Howard Kaufman and then with Dr. Burton, Engh and Kirkwood at Univ of Pittsburgh Medical Ctr. The former used a head halo the latter used Cyberknife. UPMC is at the forefront of Cyberknife research and can handle a lot more mets than other institutions. I have had over 20 asymptomatic mets removed. Very unusual and lucky for a melanoma patient given that once brain mets appear the patient often has less than 3 months.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    over 4 years ago
    Susan_Steel's Avatar

    Internal radiation

    Radiation

    7 Stereotactic Radio Treatments (Laser Brain Surgery) on Brain Mets between Dec 2009 and Oct 2012 at Rush Medical Ctr in Chicago and then with Dr. Burton, Engh and Kirkwood at Univ of Pittsburgh Medical Ctr. The former used a head halo the latter used Cyberknife. UPMC is at the forefront of Cyberknife research and can handle a lot more mets than other institutions. I have had over 20 asymptomatic mets removed. Very unusual and lucky for a melanoma patient given that once brain mets appear the patient often has less than 3 months.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    over 4 years ago
    Susan_Steel's Avatar

    Chemotherapy and immunotherapy combined (biochemotherapy)

    Drug or Chemo Therapy

    Treated at National Cancer Institute under Drs. Hughes & Rosenberg. Cytoxin used to shut down my immune system for TIL in 2007. Did the job. Under Dr. Susan Brown at Illinois Cancer Specialists in Niles, IL, Temodar used (as advised by Dr. Rosenberg at NCI after being released) in 2008 after only got 25% response in regression from TIL and 30% needed to continue on NCI trial. Told I had 3 months to live and to wrap it up. Went 23 months with continued decrease in tumor size. We did not know then that immunotherapies can take time to kick in and I was probably riding on the TIL therapy. Cysplatin used with Sorafinib in 2010 under Dr. Howard Kaufman at Rush Medical Center's Melanoma Clinic bkz Ipi and Braf trials were not open. Short term- pause in cancer growth then brain mets within 5 months.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  5. 5
    over 4 years ago
    Susan_Steel's Avatar

    Peptide Vaccines at National Cancer Institutes 2005-2006

    Clinical Trial

    Ineffective but used as Adjuvant therapy. Treated by Dr. Rosenberg.

    0 Comments
  6. 6
    over 4 years ago
    Susan_Steel's Avatar

    Antigene Therapy at National Cancer Institute 2007

    Clinical Trial

    NCI tried to grow antigene from excision in illiac node but could not get over 50% growth. Treated by Dr. Marybeth Hughes under Dr. Rosenberg.

    0 Comments
  7. 7
    over 4 years ago
    Susan_Steel's Avatar

    Adoptive T-cell Therapy or TIL at National Cancer Institute 2007

    Clinical Trial

    Treated by Dr. Marybeth Hughes under Dr. Rosenburg. Must shut down immune system with Cytoxine (extremely high dose of chemo) then flood with Adoptive T-cells grown at NCI lab. Use IL-2 as means of putting flashlight on melanoma for TIL to find. Got 25% regression in tumors but needed 30% regression to repeat trial. Thrown off trial and told 3 months to live. Took temodar and lived 23 more months before reoccurance that moved to brain for first time in 2009-Dec. Now we know that immunotherapies like TIL, Ipi (Yervoy) can take time to kick in and should probably be used before targeted therapy if patient is well enough and disease in not at full throttle.

    0 Comments
  8. 8
    over 4 years ago
    Susan_Steel's Avatar

    Yervoy - Ipilimumab

    Clinical Trial

    Received as Phase III/ Compassionate Care under Drs. Hallmeyer and Richards at Oncology Specialists/Advocate Lutheran General in Park Ridge, IL. Made it through all four doses. (Extremely expensive - $125k so get insurance coverage cleared first). Did not have rash response. Did wind up in ER due to colitis but handled within 24 hours. Then got first brain met so thrown off trial. Followed with braf/Zelboraf after Brain Surgery. Had 10 month ride (mean durability is only 5.6 months) before next brain met. Was able to cycle on and off drug for 8 more months with longer and longer periods off drug without getting mets below blood brain...did have three more occurances of brain mets. Combined with SRS brain surgery until I got clean brain scan and then finally qualified for PD1 trial. Now we know that immunotherapies like Yervoy, TIL and PD1, PDL1, PDL2 can have delayed but sometimes longer response. Braf/Mek and PD1 showing some anecdotal evidence of efficacy on brain mets.

    0 Comments
  9. 9
    over 4 years ago
    Susan_Steel's Avatar

    PD1 with 4 Peptide Vaccines

    Clinical Trial

    BMS trial run at Moffitt Cancer Center in Tampa with Dr. Jeff Weber. Took 8 months to qualify bkz kept getting brain mets. Had to cycle off Zelboraf for longer and longer periods bkz trial required no mets in brain and progression in body. Kept getting opposite, brain mets that took series of 3 SRS brain surgeries, and no progression below blood brain barrier after Zelboraf halted for 8 weeks then 10 weeks then 13 weeks. Vaccines are being used to guage if PD1 can cause reaction. Within 8th week of 12 week cycle, hives appeared. Also blew out thyroid and now take synthroid (gained 25lbs!). After first cycle, CT showed regression of remaining 10% of tumors below blood brain by 26%. MRI of brain however showed 1 reoccuring brain met and 2 new brain mets. Had SRS via Cyberknife at University of Pittsburgh Medical Ctr with Drs. Burton, Engh, Kirkwood. Resumed 2nd cycle of PD1 at Moffitt (go every other week). Hives increasing considerably. Must use Benadryl prophetically. Hoping PD1 can pass blood brain in 2nd cycle.

    0 Comments
  10. 10
    over 4 years ago
    Susan_Steel's Avatar

    Sentinel lymph node biopsy

    Procedure or Surgery

    Done at Evanston Hospital now North Shore Medical Ctr in Evanston, IL.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  11. 11
    over 4 years ago
    Susan_Steel's Avatar

    Full lymph node dissection

    Procedure or Surgery

    Full groin dissection done at National Cancer Institute in 2007 by Dr. Marybeth Hughs. Was able to do minimally invasive and preserved a lot of mobility so I could continue to hike and exercise.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  12. 12
    over 4 years ago
    Susan_Steel's Avatar

    Wide excision surgery

    Procedure or Surgery

    Done at Evanston Hospital now Northshore Medical Ctr in Evanston, IL.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  13. 13
    over 4 years ago
    Susan_Steel's Avatar

    Surgery to remove cancer that has spread

    Procedure or Surgery

    Left Iliac node dissection due to melanoma done at National Cancer Institute by Dr. Marybeth Hughes in 2007.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  14. 14
    over 4 years ago
  15. 15
    over 4 years ago
    Susan_Steel's Avatar

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  16. 16
    over 4 years ago
    Susan_Steel's Avatar

    Zelboraf

    Clinical Trial

    Got first brain met so thrown off Yervoy Immunotherapy trial. Followed with braf/Zelboraf as first patient in nation for compassionate care Phase 3 trial after Brain Surgery under Dr. Omid Hamid at The Angeles Clinic in LA. Had 10 month ride (mean durability is only 5.6 months) before next brain met. Was able to cycle on and off drug for 8 more months with longer and longer periods off drug without getting mets below blood brain...did have three more occurrences of brain mets. Ultimately went over 80 days without Zelboraf without getting more mets below blood brain. Did have to combine with SRS brain surgery until I got clean brain scan and then finally qualified for PD1 trial. Now we know that immunotherapies like Yervoy, TIL and PD1, PDL1, PDL2 can have delayed but sometimes longer response. Braf/Mek and PD1 showing some anecdotal evidence of efficacy on brain mets.

    0 Comments