SueRae1's Journey:

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"

Start taking Afinitor April 2010

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.

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

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

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

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

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

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.

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.

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

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

April 2010 scan indicates that lesions are growing again.

Afintor keeps my Renal cell lesions stable.

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.

Magic Mouthwash rules.

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

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.

Sutent and Afintor cause by counts to sky rocket.

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.

My father passes away in May 2011

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.

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

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.

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