the parallell is unreal
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Hi Betty, just emailed you your request. I see you are in Chicago, where is your Nephew located and do you know where he is being treated. His team may be a good team but they have so much to contend with, a very difficult case, indeed. You never know how strong you are until “strong” is the only choice you have! Please keep us posted we deeply care.
Thank you both Lainy and Gavin for your kind words. I will definitely be back here and probably will be posting in another area of this discussion board soon. As today was not a good day for my nephew. This all started the week of Thanksgiving, 2014. His PCP thought it was kidney stones which is why they did a ct. Saw a mass on the spine instead. It’s bad enough that this ridiculous cancer is so rare, but he also gets an even rarer met location. The whole 9 month story is just not worth going into right now, but he’s been told that the trial he’s on and the other one that was under consideration are no longer options. Along with multiple other issues. The speed at which this cancer can do it’s damage is unbelievable. The ability of this cancer to not respond to chemo, is devastating. It is so vitally imperative that anyone with a cc diagnosis be treated by the right team of doctors. Those who have experience with this monster. I know you say that time and time again on this site. And it’s not just about treating the disease, you really need to have a care team that treats the whole person and the family and friends as this is not for the faint of heart. Or for the unprepared.
Hi Betty,
Welcome to the site. So sorry that you had to find us all here and I am sorry also to hear about your nephew. You are right in that 42 is far too young to have to deal with this and everything else that he has to deal with as well. Thank you so much for sharing with us and please know that we are here for you and also that you will get so much support from all of us.
Yes I can so imagine how many times you have had to bite your lip in your meetings. You can come here as often as you want to and vent, let off steam and say what is on your mind as we so know what you are going through with everything. Thank you so much for what you say about the work that everyone here does and my thanks go back to you as well for the work that you do.
Please keep coming back here and I look forward to hearing from you more.
My best wishes to you and your nephew,
Gavin
Hello, Betty, so good to meet you and I do believe you are right up there on a pedestal in our little club. I only look at being a Moderator as very selfish because I truly get more from being on this site than I give, I call it an addiction. I have met the most amazing, caring, loving, smart people here from all over the World. I remember about a year ago I just needed some time to myself and told everyone I was taking 2 weeks off and guess what? I was back on in 2 days! The best addiction ever. I often say that if all these wonderful people ran the world what a glorious place it would be. Thank you for your message and keep up your wonderful and valuable goal!
Hello all, I’ve been reading this discussion board on and off for the last 9 months. As you can suspect, there was a Stage IV CC diagnosis in my family in December of 2014. Unfortunately unresectable. Was discovered by a backache thought to be kidney stones. Turned out to be met tumor on the spine needing immediate surgery to prevent spinal collapse and paralyses. At that time, origin of the cancer was unknown. It was figured out in the follow few weeks. This happens to be my nephew who is only 42 years old. His subsequent progression and treatment, hospitalized right now dealing with another spinal flare up, is too long for me to write at the moment as I am behind in my work. That work being the project coordinator for a Supportive Oncology Initiative where a team of professionals are trying our best to get supportive care, palliative and hospice in the hands of those who need it. You can imagine how many times I’ve had to bite my lip in meetings to hold back the tears. Just know that what you all do for each other is amazing. I’m a karma believer and I have to think that his illness and my work are meant to do good some how some way. For anyone affected by this ridiculous form of cancer, (how’s that for a professional term???), I’m sending positive airwaves your way!
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