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THANK YOU so much for sharing what you are trying, and how it is working. I am on this site because my mother battled GCS for 6.5 years, and I am trying to help when I can, and in whatever way I can, as far as support, and what she went through. I hope that the chemo continues to not give you side effects. I just added the video you shared to my “watchlist” and am looking forward to watching it. It is so important that women share their stories here; share what helps. My mother never had nausea (she thought it had to do with the fact that she also never had morning sickness during her pregnancies – maybe there is science behind that?!). I had started trying to piece together some of my mother’s notes and treatments, but I haven’t gone too far through; it’s still painful each time. I hope to get there someday soon.
I wish you the best of luck with your treatments and battle. I 100% believe that my mother was able to go 6.5 years because of her attitude. She was always smiling. Always had hope. Even when hit with nasty side effects, she thanked her God for the health she DID still have, and for the love of her family that surrounded her. Attitude and HOPE are incredibly important!!
Hugs from Northern NY.
I am so sorry for your loss. Your wife sounds like an amazing woman and it is unfortunate that until recently, there was very little research on GCS. I lost my mother on March 12, 2018 to GCS, after a 6.5 year battle. Much like Lizzie, often you wouldn’t have been able to tell that my mother was fighting GCS (except for the hair loss of course). And again, like Lizzie, the end came fast and strong. We were blindsided, as was she. We thought everything was stable. Then…prognosis from doctors suddenly said “a few weeks, if that”. Every moment with your loved ones is a blessing, and must be treated as so.
I, too, am incredibly thankful for Diane Redington and her friends and family who have helped her to get GCS up and running, and for the doctors and researchers vigorously working. My mother was fortunate enough to meet Diane Redington in the last couple of years, and she and my family truly believed she was an angel. I am also deeply thankful for the project continuing, and for all of the love, support, and information/anecdotes that can be found here on this site. If I could reach out and hug every woman and family member that has to go through this, I would. Thank you for your story, and my deepest condolences for your loss. I hope there is one day an end to GCS, and all Cancer. The most important thing is HOPE.
My mother had neuropathy with some of her treatments (I’d have to look at her records to see if she kept track of which ones). Some treatments side effects were more severe than others. There was a time when she couldn’t use her hands because they were incredibly sensitive. Other times, just numbness in her legs. I’m not sure how often it was, as she was always so positive and rarely complained.
However, based only on what I saw my mother go through, and the reality of the disease, I would agree with Kathy that holistic measures should be a compliment to chemo treatment, not a treatment by itself. Like most cancers, but even more so with GCS, it is incredibly important to be diagnosed early, and to treat aggressively as soon as possible. Realistically, there will be changes in your life because of this diagnosis, physically, and to your daily routine (such as work), but hopefully it will be a while before that happens. In my opinion, your odds will be better the sooner you receive medical (chemo) treatment.
Best of luck to you. I’m glad you are doing research and reaching out on this forum. It is a small community, but we are all here to help and support. Stay connected and stay positive! Hugs from NY. 🙂
Have you had a second opinion on radiation? I would recommend doing so, especially from a doctor who specializes in GCS. My mother had radiation right after her hysterectomy, and about 4-5 years later, one of her ureters had become constricted, causing bleeding while urinating. She had to have a stent put in place (and changed every 3 months), and the doctors at Yale believe that the constriction was due to the radiation (yes, even years later). In January this year, she was hospitalized for what doctors believed was related to the radiation as well – she had developed a fistula in her bladder and her recturm, causing bleeding and blood clots in her urine again. When she was diagnosed in 2011, there were even fewer doctors specializing in GCS as there are now. Maybe radiation is the best option; though I would definitely recommend a second opinion from a specialist. We worked with Dr. Santin at Yale, and my mother thought very highly of him. Best of luck to you. Stay positive, and never lose hope. Ever. Sending love and prayers your way.
Alicia S. Buckingham