Nov 29, 2018 11:47AM Kattysmith wrote:

Thank you, GG27! My initial meetings with the team have been positive, but it's all a new thing with new people in a new place to me, so I'm getting more antsy. I was supposed to complete the screening tests tomorrow, but just got word that they have all been pushed up a week due to an issue with the sponsor, so more toe-tapping and waiting. I was dreading starting it, but now I'm pissed that it's been postponed!

I'm glad to hear that you have a good relationship with your nurse, especially when you were having serious problems. I love your phrase, making the trial work for you rather than you working for the trial; I may be using that in the future!

Have a good week and happy holidays!

Nov 30, 2018 03:40AM Kattysmith wrote:

Thank you, Sierra, I really appreciate your input. I have been off treatment now since the end of September, which with aggressive liver mets is no bueno. Luckily, I have no pain, no swelling and my liver is chugging along, but I'm not happy with these delays in treatment. I won't know until 12/10 if I will be part of this immunotherapy trial. There is another trial that I might get into, but who knows how long that will take or if I would have to repeat all of the screening tests I will have had by then.

I have a TN friend who also got a horrendous rash all over her body from a clinical trial. They couldn't control it well and told her that she would have lasting scars and maybe blotches?

I hope that the coming months are filled with more plusses than minuses for you!

Jan 4, 2019 04:25AM Kattysmith wrote:

I've now been in this immunotherapy trial at for three weeks and will start my second cycle of treatment on 1/8. I get one infusion of Opdivo/Nivolumab on the first day of each cycle (only once per month) followed by 8 hours of hourly blood work and EKGs. That is one L-O-N-G day; the first day of the initial cycle I was at MDA from 8am until 12:30am the next day, due to some delays. I take two oral doses of the test drug daily with a 6 hour fast before the dose and two hour dose afterwards. So far, no SEs (a few minor patches of rash) and my blood work has been good. I am feeling great. Both immunotherapy drugs are hard on the kidneys, so I have to keep pushing myself to drink enough water to stay hydrated and flush my kidneys.

The rigorous schedule of visits and fasting regime around each day's oral meds has taken some adjusting to, but after the first week, I figured out what worked best for me and accepted the rest. Everyone I've come into contact with so far has been wonderful, and I am addicted to being covered with heated blankets on demand. Living the life! Assuming that all continues to go well this month, my next *pass or fail* scan will be in early February.

Jan 5, 2019 01:34PM Daniel86 wrote:

Bumped into this link. It's about new trials added to Metastatic Trial Search in January 2019

https://metastatictrialtalk.org/2019/01/02/new-trials-7/?fbclid=IwAR2ZRTIMmcycFF7L2pttI_vfBb3XTXa3dG5HXNrlgM6QnGTFLUjmIRvYtcw

Jan 10, 2019 09:24AM Kattysmith wrote:

I had a subcutaneous tumor on my lower left back that had been increasing in size per every scan since this summer. It was very easy to palpate. This is the tumor that was biopsied right before the start of the trial, and I am scheduled for a comparison biopsy on the same area next week. After one month on my clinical trial, it can no longer be felt! It's funny, I noticed the night before my appointment that I couldn't feel anything there, but didn't trust my own fingers or my husband's. I was SO happy that the doc couldn't feel anything, either!

I don't allow myself to get wildly optimistic about anything - I know better - but DAMN!!!

My doc says that's an indication that the immunotherapy treatment should be working to a degree in all other cancerous areas as well (C'MON LIVER!!!), but I won't know to what extent until my scan in February. He was practically dancing a jig!

Sign me,

Cautiously Optimistic Katty