I just returned from Texas Thursday evening and I am pretty "o.k." with the dr visit. My bloodwork was better and Creatinine was 1.00. Phosphate Serum was 3.5...so back on the trial I am. I am on the 75 mg dose of the BGJ 398 drug. I will go to RMH (local hospital) and have my creatinine checked to make sure it hasn't raised. I do not need to be dealing with cancer and failing kidneys!! Dr. Javle didn't say that he wanted me to do the extra labwork but I want to stay aware of where things stand. I will go off the drug if needed...if my levels are good, I will stay on the drug and march on. He is not too worried about my creatinine level...and says it is just borderline high for the trial. Novartis wouldn't want a patient on the trial to have kidneys that failed...now would they!
It was a good visit at MDA....the new haircut was a hit although my nurse (a man) came out twice to get me and I had my back to him and he finally called my name. The clinical trial nurse Ashley, who we all love is leaving MDA for a job elsewhere. It was a good visit.....good labs, good EKG, Eye visit, I lost 4 pounds...somewhere-still looking for where it went!! ;-) and a good visit with the good doctor J. I asked him about Keytruda...a drug used for melanoma but has proven to work for other cancers. You have to have a certain PD-1 type of cell for this drug to work well on your tumor....but he is willing to call the drug company and maybe see about starting a trial for CC patients with this type of cell.
As a new family travels to find hope at MD Anderson, there are others who end their battle of treatments at MD Anderson. I am not sure when my day will come and I am confident we will ALL be faced with death at some point in time. I am not ready to throw in the towel and I believe I have not finished Gods work here on earth. But when I feel he is knocking on my door, I will be there~~
I got a new bracelet today and I will leave you with what it says.
TRUST IS LOT EASIER WHEN YOU QUIT WORRYING ABOUT WHAT COULD GO WRONG AND REMEMBER HOW MUCH LIFE YOU'RE GOING TO LIVE NO MATTER WHAT HAPPENS~~
NO MATTER WHAT HAPPENS!!
I will end tonight's blog post with a tribute to my mother-in-law. JoAnn Corcoran was truly a happy person who rarely saw a stranger. She was so very proud of her son, Pat and daughter, Lisa. Tom and Kate (Pat's children) were the love of her life in years later....and she retired from being in the White county school district for many years. JoAnn...better know to her grandchildren and 5 great grandchildren as Mema was always there with a smile on her face. She loved the pictures Lisa would print off and were pasted all over the front of her refrigerator. As we pay tribute to her tomorrow, I can only hope people remember me as fondly as they will her. She will be missed~~
Hugs,
Patty
Dear Patty,
ReplyDeleteI found your blog yesterday and read your entire post from beginning to end. Hanging on every word to find encouragement and hope for my twin sister who was diagnosed with CC one week after our 69th birthday this past March. We are a young and active 69er's and always planned on being together way into our 90's. No matter what would happen in life we always had each other. As fate would have it, I had published a little, gift book the previous June called: Nine Friends - In Time of Loss..(about how the body was created to heal our grief) it was prophetic and God apparently was preparing ME with resources to handle what was coming. Patty, our journey now only 4 months old began like yours. U of Minnesota..." palliative care" - Mayo - "pallative care." My twin, Kathy, and her devoted husband returned from our home in Minneapolis to their beautiful haven on Lake Michigan in Holland, Michigan to begin 4 treatments (6 weeks) of FULFOX with really no other option in sight. Then I made contact with Dr. Javle who told me to bring Kathy to him as soon as her last treatment was completed...he wanted to do her scan. He reassured me that "yes, there is always hope." Like you wrote, Patty, it was as if he opened a window and the sun came in. We just returned from MDA this past Saturday... and our meeting with Dr. Herlong (arranged by Dr. Javle) and with Dr Javle was filled with hope. Kathy's tumor has not grown...perhaps shrunk a bit. All her scans were good and the liver enzymes were good - Bilrubin even normal so this "man of hope and of God" said, "Go home. Stop your chemo - get strong come back in two weeks for 5 weeks of proton radiation." We were over the moon with relief and excitement - as I know YOU know what those feelings are like when we hear good news. Dr. Javle has since emailed me that it will be IMRT as proton therapy is not as safe with Kathy ascites (which they drained while we were there). He also said then after your scan we will see you in 2 to 3 years! He also said that the IMRT had little side effects. He is so blessed with optimism that I fear we might be a bit mislead as you certainly had some very harsh side effects from what I read. I am sure you are beseeched with questions. But I so would love to correspond with you if you are able to determine the discrepancies. It does sound as if IMRT have many more side effects besides fatigue...he also said he would have Kathy meet with a physical therapist and nutritionist while there. They are planning on staying at the Rotary House but not sure after reading your blog how great of an idea that is as the kitchenette is still only one room - and you wrote about the need of more than one room - which made sense. Oh... Patty, what a journey. I told Kathy last night that God came to you right after Mayo and said "Have no fear. I am with you." And, the gift that that has been for you. Even though I know the struggle is no fearless. Whatever my twin feels I feel and the terror of losing her has been at times paralyzing - but I attack it with study after study... which my brothers also do. We are so blessed as you with wonderful husbands, children and friends - but I live in Minneapolis, which makes this so much harder as I been directing her health care. We are the yen and the yang.... I am proactive and she is put head in the sand. :-) I wish I had some of that. My email is: jss@perspectives-family.org if you are led to write me. You can put my name in google to find out a bit about me also. I would be honored if I could correspond with you personally but either way I eagerly will follow your blog - and praying with all my heart that the clinical trial you are in will help. AND, that we will all be here for the immunotherapy coming down the road.
Blessings to you, dear one, you are on my mind, heart and in my prayers. Jeannie