mbachini
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Dear Hopeseeker,
I am hoping her platelets will rebound with the lapse in chemo. I am more concerned that she is experiencing pain and having a hard time controlling it with meds. If there is a palliative care team available at her clinic, I would suggest they be consulted to help with this issue. If pain continues to get worse, I would also push for an earlier scan to find out exactly why the pain is worsening. Hoping for improvement.
Melinda
Dear Hopeful,
I have asked Karen our moderator to respond on this subject, as I know she has some good resources related to cachexia, nutrition and palliative care. I am sorry this is such a hard time for both of you. Sending all good thoughts your way……Melinda
That’s my doctor! I adore this man……”patients deserve an optimistic doctor” and he is that. I can tell you that after my first initial treatment……they had discovered that one of my t-cells was mutation reactive to my ERBB2IP mutation…..he came to my bedside, and his excitement was so contagious that I couldn’t wait to get started on another treatment, and trust me the treatment isn’t easy, but was so worth it!!!
This picture was taken in June, when we told my story to nine senators at NIH to show the importance of research funding. Melinda
I am excited to watch this, I have been hearing about it all year. I look forward to seeing Dr. Rosenberg, Dr. Goff and some of the awesome staff that cared for me the past five years I have been a patient at NIH. It truly is an amazing place! I remember an amazing research scientist told me one day with tears in his eyes that they learn from all the patients, not just the success stories. He was grateful for the patients who chose to participate in clinical trials and advance research.
Melinda
Julie,
I just want you to know you are in my thoughts and prayers. Going to hold on to the good news of No Evidence of CC……all my best.
Melinda
You are my mentor and everything that everyone said above I couldn’t agree more. Thank you for inspiring me to be an advocate, for answering my questions, for believing that I could serve as a patient advocate at NCI, for teaching me daily, for being an outstanding, brilliant, giving human being!! If I can be half the advocate you are, I will be pleased!! Please know I am here for you just as you were for me…….hugs and love!
MelindaKris,
Mary made great points. My CA19-9 has never been a good indicator throughout my diagnosis. In fact, the only time mine was elevated was during treatment, when there was shrinkage occurring from the immunotherapy treatment. I have talked with several patients who follow their CA19-9 closely and have a handle on changes and swear by the rise and fall of these numbers. I think it is another tool in the tool box, but we have to put the whole picture together with scans, bloodwork and symptoms.
Melinda
Hi Wim
Welcome to this discussion board. I am sorry to hear of your mother’s diagnosis, but know you have come to the right place to find information from patients and caregivers all over the world.Please don’t give the statistics too much thought as Mary pointed out many reasons for possible inaccuracy. We are all individual and respond differently to treatments. I am happy to hear her stents have been placed and that this will relieve some discomfort for her.
Please keep us posted on her progress and let us know if we can help with any questions.
All my best,
MelindaHere are a few links of articles discussing liquid biopsies. It is nice to have this option when acquiring tissue samples can sometimes be difficult and hard to get with cc patients.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4356857/
https://www.cancer.gov/news-events/cancer-currents-blog/2016/asco-liquid-biopsyThanks for the insight Beatriz, and hoping you can check into this option for your mother Positivity.
Melinda
Dear Jonas,
I am so very sorry for the loss of your sister. Praying for peace, strength and comfort for you and your family.
Melinda
Vedic,
I absolutely love to hear this good news!! Thanks for sharing and giving hope to others!
Melinda
So did Rose Wong, I have not had total benefit, but 5 years of Immunotherapy and still going strong.
MelindaThis is so cool, I am so happy for Celine. I have met another patient who has had great results 2 follow ups in a row now, my fingers are crossed for her! Watch for Dr. Eric Tran’s presentation from the conference when presentations are posted, as he talked about Celine’s case as well.
Melinda
