SueRae1's Journey:

  1. 1 Procedure or Surgery Icon Procedure or Surgery
  2. 2 Procedure or Surgery Icon Procedure or Surgery
  3. 3 Radiation Icon Radiation
  4. 4 Other Care Icon Other Care
  5. 5 Other Care Icon Other Care
  6. 6 Oh No Icon Oh No
  7. 7 Oh No Icon Oh No
  8. 8 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  9. 9 Oh No Icon Oh No
  10. 10 Side Effects Icon Side Effects
  11. 11 Side Effects Icon Side Effects
  12. 12 Side Effects Icon Side Effects
  13. 13 Side Effects Icon Side Effects
  14. 14 Side Effects Icon Side Effects
  15. 15 Side Effects Icon Side Effects
  16. 16 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  17. 17 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  18. 18 Celebration Icon Celebration
  19. 19 Decision Point Icon Decision Point
  20. 20 Decision Point Icon Decision Point
  21. 21 Decision Point Icon Decision Point
  22. 22 Loss Icon Loss
  23. 23 Side Effects Icon Side Effects
  24. 24 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  25. 25 Oh No Icon Oh No
  26. 26 Celebration Icon Celebration
  27. 27 Side Effects Icon Side Effects
  28. 28 Celebration Icon Celebration
  29. 29 Oh No Icon Oh No
  30. 30 Clinical Trial Icon Clinical Trial
    ???
  31. 31 Procedure or Surgery Icon Procedure or Surgery
  32. 32 Clinical Trial Icon Clinical Trial
  33. 33 Celebration Icon Celebration
  34. 34 Side Effects Icon Side Effects
  35. 35 Oh No Icon Oh No
  36. 36 Oh No Icon Oh No
  37. 37 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  38. 38 Celebration Icon Celebration
  39. 39 Celebration Icon Celebration
  40. 40 Oh No Icon Oh No
  41. 41 Oh No Icon Oh No
  42. 42 Procedure or Surgery Icon Procedure or Surgery
  43. 43 Oh No Icon Oh No
  44. 44 Oh No Icon Oh No
  45. 45 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  46. 46 Oh No Icon Oh No
  47. 47 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  48. 48 Side Effects Icon Side Effects
  49. 49 Side Effects Icon Side Effects
  50. 50 Side Effects Icon Side Effects
  51. 51 Oh No Icon Oh No
  52. 52 Celebration Icon Celebration
  53. 53 Celebration Icon Celebration
  54. 54 Decision Point Icon Decision Point
  55. 55 Celebration Icon Celebration

Survivor: Breast Cancer > Invasive (Infiltrating) Ductal Carcinoma > Triple-Negative Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Female, Age: 67, Stage IV, HER2 Positive: No, ER Positive: No, PR Positive: No

  1. 1
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Lumpectomy

    Procedure or Surgery

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

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  2. 2
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Implant chemotherapy port

    Procedure or Surgery

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

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  3. 3
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    External radiation

    Radiation

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

    Painless Experience: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

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

    0 Comments
  5. 5
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Psychosocial

    Other Care

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

    0 Comments
  6. 6
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Relationship issues

    Oh No

    DH and I are beyond stressed out.

    0 Comments
  7. 7
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Cancer has spread/Metastasized

    Oh No

    a .9 cm rim cell lesion found on my liver.

    0 Comments
  8. 8
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Started infusion therapy in May 2012. Energy difficult to manage. Basically inactive for 3 days after treatment.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  9. 9
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Other

    Oh No

    Treatment not working - need to switch to carboplaitin

    0 Comments
  10. 10
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Fatigue (tiredness)

    Side Effects

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

    0 Comments
  11. 11
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Depression/Anxiety

    Side Effects

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

    0 Comments
  12. 12
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Hair loss (alopecia)

    Side Effects

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

    0 Comments
  13. 13
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Low platelet counts (thrombocytopenia)

    Side Effects

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

    0 Comments
  14. 14
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Mouth dryness

    Side Effects

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

    0 Comments
  15. 15
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

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

    0 Comments
  16. 16
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Depression medicine

    Drug or Chemo Therapy

    self injecting neupogen on 9/21/2012

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  17. 17
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Depression medicine

    Drug or Chemo Therapy

    Xanax is a life saver.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  18. 18
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Cancer is shrinking

    Celebration

    Found out on 9/20 that my new treatment is working.

    0 Comments
  19. 19
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Decided to have my cancers sequanced for mutations.

    Decision Point

    My oncologist sent my pathology slides for both my cancers to Foundation Medicine, where they will be sequenced for mutations. The hope is to develop a more targeted treatment plan for treating both my cancers, especially if cross over mutations are found.

    0 Comments
  20. 20
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Partcipating in Gentic study of ashkenazi women who are BRACA Negative and have a family history of Breast/Ovarian cancer

    Decision Point

    This was a no brainier - two vials of blood so they can study my genes. I believe in paying it forward.

    0 Comments
  21. 21
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    2nd opinions

    Decision Point

    i have been getting 2nd opinions since my original diagnoses in Sept 2010. They have been very helpful. Linda Vadat who saw me in July to review my infusion treatments has been invaluable. She confirmed that I was getting the right treatment which is always good to hear. She suggested that i have my cancers looked at by Foundation Medicine to see what mutations they had. She also gave me the name of Dr Lipkin - a Geneticists to test for Codwens syndrome - a mutation of the Pten gene . Based on my personal and family history I am having a BreastNext Panel to see what mutations I may have that can trigger cancers.

    0 Comments
  22. 22
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Lost loved one

    Loss

    Father in law died the day after my initial breast cancer diagnose in Sept 2010. My mother in-law passed away Oct 31 2011.

    0 Comments
  23. 23
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Other

    Side Effects

    sever gas in all of my digestive track. This is relatively new. Started at the end of my last cycle and again last night after my infusion.

    0 Comments
  24. 24
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Neuporgen shots - self inject for three days 24 hours after my infusion

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  25. 25
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Money

    Oh No

    Neupogen co-pay is $100 a shot ($300 every 3 weeks) - Amgam does not offer patient assistance, because they claim it is to be inject at hospital/infusion center. Research and Oncologist Nurse Practitioner indicate that over 80% of people on drug self inject at home. DH said the company info insert, stated that the first shot or round might be given at the treatment center, but otherwise can and should be done at home.

    0 Comments
  26. 26
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    Cancer is shrinking

    Celebration

    Latest MRI shows that the lesion on my liver is continuing to shrink.

    1 Comment
  27. 27
    • SueRae1
    • Experience with Triple-Negative Breast...
    about 6 years ago
    SueRae1's Avatar

    Anemia (low red blood cell counts)

    Side Effects

    Fond out my Hemoglobin was 9 when I went for my infusion on 11/21 - got a transfusion and injection instead. My doctor to call to see how I was doing yesterday (Friday 11/23) and informed me I need another transfusion on Tuesday *sigh* - well at least my swelling, exhaustion, and shortness of breath have been explained.

    0 Comments
  28. 28
    • SueRae1
    • Experience with Triple-Negative Breast...
    about 6 years ago
    SueRae1's Avatar

    Recived Grant from the HealthWell Foundation

    Celebration

    Received grants for this year and next to help cover co-pay of Nupergen shots.

    0 Comments
  29. 29
    • SueRae1
    • Experience with Triple-Negative Breast...
    about 6 years ago
    SueRae1's Avatar

    Issues with Platelet counts

    Oh No

    Platelets are still to low to be infused. Oncologist tells me that the Carboplatin has compromised my bone marrow to much. This is an expected side effect, but I am feeling sad and frustrated.

    2 Comments
  30. 30
    • SueRae1
    • Experience with Triple-Negative Breast...
    about 6 years ago
    SueRae1's Avatar

    Clinical Trial

    My oncologist would like me to participate in a clinical trial using Erlotinib and Metformin to treat TNBC. This common works for for Lung cancer, and has shown promising results in the lab. The study would last 4 months. This is not a double blind trial, I will be receiving the drugs under study

    0 Comments
  31. 31
    • SueRae1
    • Experience with Triple-Negative Breast...
    almost 6 years ago
    SueRae1's Avatar

    bone marrow biopsy

    Procedure or Surgery

    Biopsy is performed in the bone area just above the tush. I felt mostly pressure, but there was pain in in the area below the site - around where my thigh and burdock's meet, especially when standing and walking. Took two Tylenol while still in the doctor's office. 4 hours later it's just a dull ache.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  32. 32
    • SueRae1
    • Experience with Triple-Negative Breast...
    almost 6 years ago
    SueRae1's Avatar

    Started Oral chemo Clinical on 3/21/2013

    Clinical Trial

    Celebrated my birthday this morning by taking my new chemo pills. My first treatment since 1/11/13

    0 Comments
  33. 33
    • SueRae1
    • Experience with Triple-Negative Breast...
    almost 6 years ago
    SueRae1's Avatar

    Platelet count finally above 75 for the first time since 1/10/13

    Celebration

    I can now start treatment/clinical trial. I am so relieved. Spent all day at the hospital 3/20 finishing up lab work, paper work, skin biopsy and getting my meds and prescriptions for potential side effects.

    1 Comment
  34. 34
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 5 years ago
    SueRae1's Avatar

    Allergic reaction

    Side Effects

    Developed skin rash from clinical trial drugs.

    0 Comments
  35. 35
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 5 years ago
    SueRae1's Avatar

    Pulled from Clinical Trail due to allergic reaction.

    Oh No

    The dermatologist and oncologist felt that it was too dangerous to stay on the trial due to the my allergic reaction. We still don't know which of the two drugs caused it. Too bad, my last scan showed that my lesion may have shrunk

    3 Comments
  36. 36
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 5 years ago
    SueRae1's Avatar

    Issues with Platelet counts - they are still bellow 100

    Oh No

    Beginning to feel like my bone marrow is shot.

    0 Comments
  37. 37
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 5 years ago
    SueRae1's Avatar

    The Prednisone pills to help jump start low Platelet count

    Drug or Chemo Therapy

    The Prednisone pills are making me, tired, cranky (to be polite), and ravenous

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  38. 38
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 4 years ago
    SueRae1's Avatar

    Remission

    Celebration

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

    4 Comments
  39. 39
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 3 years ago
    SueRae1's Avatar

    Revived conformation of my 9-11 claim from the Government.

    Celebration

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

    0 Comments
  40. 40
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 2 years ago
    SueRae1's Avatar

    New Node Found on my Lungs

    Oh No

    My April scan showed that a new node of 7mm was found on the lymph node of my lung. I need to see a Pulmnologist.

    0 Comments
  41. 41
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 2 years ago
    SueRae1's Avatar

    Pulmnologist can't see me for 6 weeks

    Oh No

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

    0 Comments
  42. 42
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 2 years ago
    SueRae1's Avatar

    PET scan

    Procedure or Surgery

    I was surprised at how pleasant and calming the experience was. I was also very easy to set up. I called on Thur and got an appointment on Tues.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  43. 43
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 2 years ago
    SueRae1's Avatar

    New Node on lung needs to be biospied

    Oh No

    On the plus side the other lung nodes on my lungs, the quiescent lesions on my liver and the rest of my body (except my brain) did not lite up.

    0 Comments
  44. 44
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 2 years ago
    SueRae1's Avatar

    Cancer is back/Recurred

    Oh No

    The pathologyreport on the new node in my lung confirmed it was TNBC. I am having a port put in 7/14 and my first ttreatmenton on 7/15. 2 pluses the nodewas the only thingthat lit up on tthePET' Scan and all my markers are nnormal

    10 Comments
  45. 45
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Targeted therapy

    Drug or Chemo Therapy

    I was on Irubulion from July 2016-Oct 2016. It was a 5 min injection via my port. I still spent the whole morning at the infusion center - because the wait times for blood draws, results, chemo set up and delivery were same as when I was on Carbo/Genzar/Avason in 2012. I was usually out by 11:30 as oppose to 2:30. The impact was less debilitation as lasted longer but the steroids were the steroids. No impact to blood counts and nausea was mild - ginger tea and candies were all I needed. Lost my hair, though I was told I wouldn't - a Buzz cut took care of that.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  46. 46
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Hospilized for Food Posioning

    Oh No

    In Aug I was hospitalized for 3 days due to food posioning - a mild variation of of eColi - My team said if I wasn't on chemo I wouldn't have even known about it. Just gotta love a suppressed immune system

    0 Comments
  47. 47
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I was put on Xeloda in Oct 2016 - because the Iribulin didn't work.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Agree
    0 Comments
  48. 48
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Diarrhea

    Side Effects

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

    0 Comments
  49. 49
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Constipation

    Side Effects

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

    0 Comments
  50. 50
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Hand foot syndrome

    Side Effects

    Xeloda made my hands so red and painful that I had a 3 week break in May 2016 my dose was reduced to 5 pills a day

    0 Comments
  51. 51
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Hospitlized for sever dehydration, diarrhea, and hand/food syndrome Nov/Dec 2016

    Oh No

    Full blown Xeloda trifecta - sever dehydration, diarrhea, and hand/food syndrome, my hands and feet were peeling. I was in the hospital for 7 days and 6 nights, and the symptoms continued for a week after I got home. I had a 5 week break and my dosing and scheduling of Xeloda was changed from 7 pills a day two weeks on, one week off - to 6 pills a day one week on one week off.

    0 Comments
  52. 52
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Cancer is shrinking

    Celebration

    Jan 2017 scans shows that node in lung has shrunk by 85%

    3 Comments
  53. 53
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 1 year ago
    SueRae1's Avatar

    Remission

    Celebration

    April 2017 scans shows I'm in remission. I am still on my 6 pills one week on, one week off schedule. This may change after my July scans -but I will be on a some sort of chemo maintenance for the rest of my life. Two stage IV instances of TNBC make me very high risk for a 3rd.

    0 Comments
  54. 54
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    BreastNext panal

    Decision Point

    Ambry utilizes next generation sequencing to offer a comprehensive testing panel for hereditary breast and/or ovarian cancer, excluding BRCA1 and BRCA2. Genes on this panel include ATM, BARD1, BRIP1, CDH1, CHEK2, MRE11A, MUTYH, NBN, PALB2, PTEN, RAD50, RAD51C, STK11 and TP53. Gross deletion/duplications are analyzed for 10 of 14 genes. Site-specific analysis is available for individual gene mutations known to be in the family.

    0 Comments
  55. 55
    • SueRae1
    • Experience with Triple-Negative Breast...
    over 6 years ago
    SueRae1's Avatar

    BRCA1 and BRCA2 negative

    Celebration

    I am of Ashkenazi decent and breast cancer runs in my mother's family (2 aunts & 2 cousins). I was relieved to find out that I tested negative BRACA1/BRACA2 and all know subtypes.

    0 Comments