SueRae1's Journey:

Survivor: Kidney Cancer > Renal Cell Carcinoma > Clear Cell

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 8 years ago, Female, Age: 65, Stage IV

  1. 1
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Surgery

    Procedure or Surgery

    I had a nephrectopmy in November of 1995. It took me 6 months to full recover. I was told at the time that they found a complely encapsulated cancer tumor, and that the surgery had "cured me"

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  2. 2
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Start taking Afinitor April 2010

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    In July 2009 several lesions were discovered on my liver. The biopsy match the kidney cancer slides from Nov 1995. I was put on Sutent, which didn't work and then on Afintor. Both these drugs are oral medications, so they were easy to use. The side effects were - sever mouth ulcers, fungal infections, increased BP, increased Cholesterol and Triglycerides. It also effected my day to day energy levels. I was on Afintor from April 2110-April 2012. I was taken off it because my scans indicated new lesions on my liver, which where diagnosed as metastasized triple negative breast cancer. My kidney cancer is not being treat with Avastin, one of the drugs in my breast cancer infusion cocktail.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    CAM (Complementary and Alternative Medicine)

    Other Care

    I am a big support of CAM. I get regular massages and energy work. I go to a chiropractor. I use holistic treatments that are approved my my oncologists., such as Ginseng tea and nutritional supplements

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  5. 5
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Other

    Celebration

    Renal cell cell cancer is still stable, my markers have gone down, nodes in lung are gone.

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  6. 6
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Cancer is back/Recurred

    Oh No

    After being cancer free for 14 years kidney cancer lesions were found on my liver. No where else only on my liver.

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  7. 7
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Breast cancer diagnosed in Sept 2010

    Oh No

    a small (less then 1 cementer) triple negative lump was found on my left breast in September 2010

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  8. 8
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I just wish my doctor would have been more forth coming about what infusion therapy does to your veins. His comment on it in early May was "you may want to get a port, you may not. Many people need to get them eventually". i opt not to. After living with black and blue arms for over two months, and realizing that the insertion of the pick line was getting harder and harder, and more painful, due to lack of good veins, I had a port inserted in early August. I now tell everyone - get a port! don't be like me and wait until it's almost to late.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  9. 9
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Lumpectomy

    Procedure or Surgery

    Lumpectomy went off with out a hitch. I was able to resume treatment for Kidney cancer with in a week.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  10. 10
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    External radiation

    Radiation

    I received radiation for my my breast cancer while on Afintor to treat my kidney cancer. I was barely functioning by the end of my course of treatment, and it took about a month to get back to my pre-radation self.

    Painless Experience: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  11. 11
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Psycolgical

    Clinical Trial

    I was part of a study done at Columbia Presbyterian to see what type of short term psychological treatment would be the best for Breast Cancer patients. They were looking to expand the study to include other cancer patients, and I was a good fit, since I was dealing with two active cancers at the same time. I found it to be very helpful in setting my priorities, applying for disability , etc. I basically was deluding myself on the impact my treatments were having on my life. It took me 3 months to realize I needed to apply for disability, another 3 to finally apply.

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  12. 12
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Psychosocial

    Other Care

    Seeing a therapist and marriage counselor to help me and DH deal with the stress of my cancers and treatments.

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  13. 13
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
    SueRae1's Avatar

    Other Care

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

    0 Comments
  14. 14
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
    SueRae1's Avatar

    Cancer is shrinking

    Celebration

    Jan 2010 scan indicates that Sutent is shrinking the lesions on my liver

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  15. 15
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Sutent stopped working

    Oh No

    April 2010 scan indicates that lesions are growing again.

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  16. 16
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Cancer stable

    Celebration

    Afintor keeps my Renal cell lesions stable.

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  17. 17
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Massive Fungel infection

    Oh No

    While sitting shiva for my father in May 2010 - my body is covered head to toe by a fungal rash. Takes a month to clear up using nystatin.

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  18. 18
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Mouth sores

    Side Effects

    Magic Mouthwash rules.

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  19. 19
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    High blood pressure (hypertension)

    Side Effects

    Sutent and Afrintor raise my pressure and make it hard to manage.

    0 Comments
  20. 20
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Other

    Side Effects

    Low pulse rate - both Sutent and Afintor in enhance the effect of Atenool, which lowers BP by lowering pulse rate - I dipped as low as 22 BPM.

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  21. 21
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
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    Colestrol and triglisrides very high

    Side Effects

    Sutent and Afintor cause by counts to sky rocket.

    0 Comments
  22. 22
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
    SueRae1's Avatar

    infected tooth cause 10 hospilzation

    Oh No

    Shortly after starting Sutent, a tooth started bothering me. The dentist decided it should come out, but we could wait till my off week. Two days later I am rushed to the hospital spiking 103.

    0 Comments
  23. 23
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
    SueRae1's Avatar

    Lost loved one

    Loss

    My father passes away in May 2011

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  24. 24
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
    SueRae1's Avatar

    Oncolgist leaving hospital - follow him or see replacemnt?

    Decision Point

    My oncologist has left the hospital where I am being treated. I have been seeing him since my Aug 2009. At this point I see the Breast Oncologist who consults with him about my treatments. I am trying to to decide if I should see the Oncologist (the head of the department) taking over the renal cell patients, or continue seeing DR P, who will be seeing current patients in an office about an hour from where I live.

    0 Comments
  25. 25
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    over 3 years ago
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    Still on cehmo break

    Celebration

    The two lesions on my liver are still stable. Still on Chemo Break (since May 2013) next set of scans in Late may/Early June

    0 Comments
  26. 26
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    over 3 years ago
    SueRae1's Avatar

    Remission

    Celebration

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

    0 Comments
  27. 27
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    almost 3 years ago
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    Meeting with Oncologist to disccus removal of quisecent/Dead lesion on liver

    Other Care

    I still have 3 very small lesions on my liver, which have been stable for almost 3 years. My Breast oncologist thinks they may be able to be removed via laser or surgery - meeting with my Kidney Oncologist to discuss this, and if he agrees I will meet with a liver surgeon.

    0 Comments
  28. 28
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 2 years ago
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    Revived conformation of my 9-11 claim from the Government.

    Milestones

    I've been working with my attorney for over year on this.

    0 Comments
  29. 29
    • SueRae1
    • Experience with Clear Cell, Kidney Cancer
    about 5 years ago
    SueRae1's Avatar

    Decision Point

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

    0 Comments