SueRae1's Journey:
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 4 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 5 Other Care Icon Other Care
- 6 Celebration Icon Celebration
- 7 Oh No Icon Oh No
- 8 Oh No Icon Oh No
- 9 Procedure or Surgery Icon Procedure or Surgery
- 10 Procedure or Surgery Icon Procedure or Surgery
- 11 Radiation Icon Radiation
- 12 Clinical Trial Icon Clinical Trial
- 13 Other Care Icon Other Care
- 14 Other Care Icon Other Care
- 15 Celebration Icon Celebration
- 16 Oh No Icon Oh No
- 17 Celebration Icon Celebration
- 18 Oh No Icon Oh No
- 19 Side Effects Icon Side Effects
- 20 Side Effects Icon Side Effects
- 21 Side Effects Icon Side Effects
- 22 Side Effects Icon Side Effects
- 23 Oh No Icon Oh No
- 24 Loss Icon Loss
- 25 Decision Point Icon Decision Point
- 26 Celebration Icon Celebration
- 27 Celebration Icon Celebration
- 28 Other Care Icon Other Care
- 29 Milestones Icon Milestones
- 30 Oh No Icon Oh No
- 31 Decision Point Icon Decision Point
Survivor: Kidney Cancer > Renal Cell Carcinoma > Clear Cell
Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 11 years ago, Female, Age: 69
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Cancer is back/Recurred
Oh No
After being in remission since Oct 2012, Renal cell cancer stage IV diagnosed again in May 2018
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"
Chemotherapy
Drug or Chemo Therapy
Start taking Afinitor April 2010
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.
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
Other
Celebration
Renal cell cell cancer is still stable, my markers have gone down, nodes in lung are gone.
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.
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
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.
Lumpectomy
Procedure or Surgery
Lumpectomy went off with out a hitch. I was able to resume treatment for Kidney cancer with in a week.
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.
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.
Psychosocial
Other Care
Seeing a therapist and marriage counselor to help me and DH deal with the stress of my cancers and treatments.
Other Care
This person has yet to add any details about this experience.
Cancer is shrinking
Celebration
Jan 2010 scan indicates that Sutent is shrinking the lesions on my liver
Sutent stopped working
Oh No
April 2010 scan indicates that lesions are growing again.
Cancer stable
Celebration
Afintor keeps my Renal cell lesions stable.
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.
Mouth sores
Side Effects
Magic Mouthwash rules.
High blood pressure (hypertension)
Side Effects
Sutent and Afrintor raise my pressure and make it hard to manage.
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.
Colestrol and triglisrides very high
Side Effects
Sutent and Afintor cause by counts to sky rocket.
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.
Lost loved one
Loss
My father passes away in May 2011
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.
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
Remission
Celebration
This person has yet to add any details about this experience.
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.
Revived conformation of my 9-11 claim from the Government.
Milestones
I've been working with my attorney for over year on this.
Suspiscious lesion found on lobe 2 of liver
Oh No
Cried and cried. I opted to have it biopsied (this is 3rd scan in a row something suspicious has been found, the other two turned out to be nothing) - the Intervention Radiation team said that the lesion was to hard to get too, and the lesion wasn't serious enough to be worth the risk to getting to. Another 12 weeks of wondering
Decision Point
This person has yet to add any details about this experience.