Dancnbear Update

It has been a long time since I last posted but that doesn’t mean I haven’t been visiting the site and reading up on how everyone is doing. Reading how brave each of you has been and how hard you are fighting helps me to get through the day and so I must say thank you to all.

With regards to me here is a quick update in bullet form (hope it makes it easier to read)

• Fall 2004 Diagnosed with Melanoma. Cancer surgically removed

• Fall 2008 Right Kidney and Adrenal Gland Removed (not related to Skin or Prostate Cancer)

• Winter 2008 Prostate Removed (Stage 1 Cancer but not related to Kidney or Skin Cancers)

• Summer 2013 diagnosed stage 4 RCC with mets to lung, chest, thyroid, and bone in right arm

• Winter 2014 entered clinical trial with Nivolumab and Ipilimumab. After one year was out of program due to severe side effects. Was hospitalized 7 times with an average of 4 days each stay. High fevers, low blood pressure, fatigue, blurred vision, and severe joint pain (this joint pain has now stayed with me and requires pain meds to get through the day)

• Spring 2014 went to ER with pain in right arm turns out to be RCC in arm which required two procedures and an eventual rod being placed in arm. Did 10 days of radiation to kill cancer in arm

• Long term side effects of trial was the total shut down of thyroid (now have hypothyroidism) and the shutdown of my one remaining adrenal gland (now have Addison’s Disease/Adrenally insufficient). I have been hospitalized several times since while in something called severe Adrenal Crisis. Each time this happens I am not really sure where I am at. The hospital needs to shoot me up with Hydrocortisone to get me back on track but that takes a while. I now take that drug plus numerous other drugs on a daily basis to fight the cancer but also to compensate for the other issues referenced above.

• End of 2014 went to Sutent but was too harsh on system. Had a few more visits to the hospital. We have now determined that because of the Addison’s disease and the clinical trial my immune system is totally compromised so I can get sick very easy and get VERY sick very fast. If I don’t catch it fast enough and double up on certain meds I ALWAYS wind up in the ER. Now carry Solu-Cortef and a syringe with me to shoot myself up if I start to go into crisis mode. Even if I am able to shoot myself up it still doesn’t prevent me from rushing to ER where I now know many of the doctors and nurses on a first name basis. Two of the nurses even played with my kids when they were younger.

• 2015 went over to Votrient (600mg). Side effects are much better but still have issues with severe joint pain, fatigue, hair has turned white, chills, sweats, sometimes issues with breathing (feels like someone is sitting on my chest) and random bowel movements. Hospital stays still occur due to getting very sick very fast. Just had 2 visits to ER (one was only a few hours the other was 3 days) between Thanksgiving and Christmas due to a severe stomach virus that went into Adrenal Crisis Mode. Wife got the stomach virus and was out of work for a week. Boy that was a fun wek between the two of us. Fighting over the bathroom, garbage cans, and garbage bags......lol

• Original mets that were diagnosed in 2013 are all gone but have been replaced by new sites. Mostly confined to lung and abdomen. Have a new one growing in my neck which causes neck spasms, headaches, and general stiffness. They did a biopsy but the sample was inconclusive. Why, because the growth was too deep to get a good sample. They want me to go into the hospital as an outpatient to they can go deeper.

• Have been working full time throughout and not sure how I am doing it but earned number 1 sales rep on east coast for company and top 5 nationally. I guess I should get sick more often.

• Have been laughing my way through the issues and just trying to enjoy life. This site helps that

• Have realized that what has occurred over the last two years has bought me more time even though the quality of life at times isn’t that great. My oldest is getting married at the end of 2016, daughter graduates nursing school in 2016, and middle son is on his way to a career of College Coaching (Swimming)

• Reading other’s posts helps me to get through the day knowing that what I have in some cases is just not that bad and if others can get through the day then so can I!

So that is my update and I just can’t thank each of you enough for all that you do to help me get through this disease. I wish you all lots of luck in your fights and a Happy New Year