mbachini
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Dear Hopeful,
I too, am so very sorry to hear of this news. I love that you are living each day to the fullest and like it is a vacation……..a lesson for all, that time is so precious. I am happy he is enjoying eating again. Thank you for sharing with us and know that you both will be in my thoughts and prayers.
All my best,
MelindaBrigitte,
Hoping and praying the TACE brings great results! Glad your home and hope the pain goes away soon.
All my best to you,
MelindaDear Taylor,
I also had normal blood work, my liver enzymes were always normal despite having a 13cm tumor in my liver. I also didn’t look sick. I really didn’t look or start to feel really sick until the toxicity of chemo set in……It is a crazy thing to find out you have cancer with so few red flags. Looking back, I can see more signs…at the time I could account for them due to my job. All my best to you and your MIL. Keep us posted on progress.
MelindaBilly,
Wow, what an ordeal Kathy has been through! I am so glad she is improving and out of the hospital. I can’t recall hearing of anyone having meningitis during treatment, but understandable it could happen with a weakened immune system. Sending all my best for continued healing. Thanks for posting the information so others can be aware.
Melinda
Dear Jonathon,
I am so very sorry for the loss of you wife. Sending love, prayers and hugs to you and your family. May you find the strength, peace and comfort you need to get through this difficult time.
Melinda
Thanks Gavin,
I am always shouting from the roof top that funding for research is sooooooo very important!!
Melinda
Dear Rod,
First and foremost, I am so deeply sorry for the loss of your wife. My heart hurts for all those who are left behind by this dreadful disease.
Secondly, welcome to the discussion board. We are so happy to have you and grateful for your willingness to participate and help others. It is people like you that make a huge difference for others going through these hard times.
All my best,
MelindaDear all,
I wanted to do a recap of the past year at NIH….I continued with Pembrolizumab for 8 treatments, the last one was in March 2017. It worked to open the window for my mutation reactive t-cells to see the cancer and shrink it again. I still have some spots left in my lungs….which have remained unchanged since March. I have had no other treatments since Pembrolizumab. The plan for now is to just watch. As long as they are not growing there is nothing to worry about. My last check up was last week and all is still good! My quality of life is great.Melinda
Dear ChezWright,
I am so sorry to hear of your recurrence. Happy that you will be connecting with Dr. Javle. Did you have a biopsy done with molecular testing? Please keep us posted as to what Dr. Javle says. Sending you all my best.
Melinda
Kathy,
Wow, that is a lot to handle…….your positive attitude shines through your story. Regarding the brain mets……sometimes I wonder if it is more common than thought to be. I have known quite a few cc patients who were discovered to have brain mets. Their brains were scanned for clinical trial enrollment and follow up……patients not enrolled in trials rarely have their brains scanned routinely but only when symptoms arise. Just some food for thought, and my observation only.
I am so impressed that you continue to work, that is amazing. Just out of curiosity have you checked into social security disability? Cholangio patients are approved immediately. I had no idea when I was first diagnosed, and just wanted to pass that info on to you.
All my best,
Melinda
