cillie
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I havent checked in to these forums in a while. I really try to limit my exposure to the depressing nature of this disease as much as possible (a little selfish, I know). I specifically decided to log in to see how Duke was doing actually. Something just told me it was time. When I was diagnosed 1 year ago Duke was one of the first to reply to me and he is someone in a similar situation to mine (non operable, etc) he let me know that there is no “expiration date” stamped on my foot. He even contacted me by e-mail recently just to check in. Duke, if you read this I hope you are at peace with your decisions and I hope you make it through this to fight another day (if that is your wish) Cillie
MD Anderson hasn’t told me to start trials yet. They just got the Foundation testing done so that I had options when it might be time for that. I just got the results yesterday by email and wont go over them with my onc until April. You were diagnosed almost exactly a year before me. You have similar metastasis to me. It is my understanding that you are still not eligible for surgery. Would you not consider a trial at this point? What are your next steps?
Sooooo…….that was a bad day. I am simultaneously embarrased and protective of my post here
. While raw displays of emotion are usually reserved for my cat, I couldnt help but feel like you guys are the only ones who can come close to understanding my feelings here. So thank you for your replies.I got the chemo worked out and I am happy about that. I also will be seeing my Birmingham Dr this Friday. I plan to get some real answers from him about his plan of care for me. I think he needs to be thinking more long term and i dont think he is doing that right now.
I generally settle somewhere between acceptance and dark humor where this disease is concerned and I find that place to be comfortable. I sometimes venture into bitterness or anger and I allow myself a brief few moments to wallow in self pity before I snatch myself back up and move on.
I also disagree about the port, however, it has been a blessing from the start and I appreciate the foresight of my Birm Onc for getting that done early on.
This may be completely different than what he is experiencing, but I have had some really strange back pain that we think is due to an electrolyte imbalance. The Cisplatin caused my Magnesium level to drop. The pain usually starts in my lower back and radiates up to my shoulders. It’s pretty intense at times. The two times it has been the worst is right when I start my infusion. Magnesium supplements seem to have eliminated the issue though. Hope his problem is resolved soon
Oh yeah, me and my dad go to chemo together and we have fun
I absolutely love the infusion center in Birmingham too. Also, I’ve become friends with the chaplain that comes around and talks to people there and she has been integral in my ability to deal with all of this. So I want to stay in Birmingham. MD Anderson is a 10 hour drive though. So it’s not feasible to have infusion there regularly anyway. I just want my Dr here to consult with them on my treatment plan and I don’t think that’s what is happening here. Maybe I just need to find another Dr in Birmingham.I was daignosed about 2 months after graduating from Nursing school.
I had hip pain for about 8 months before I finally went to the doctor so I know I had it then.
Before that I had fatigue but I always assumed it was due to stress from school.
I was also diagnosed with high blood pressure while in school and my medicine was making my heart race.
I did have some weight loss towards the end of school about 6 months before my diagnosis. But I attributed that to 12 hour shifts during my preceptorship. Plus, I could afford to lose the weight so I was happy about it.Laura,
Congratulations on qualifying and having surgery!! It really is something we all dream of. I can only imagine the recovery, however, and I’m so happy to hear that you are keeping such a great attitude through all of this. I, too, have good days and bad days. I’m only 3 months into my diagnosis and the fear of the “unknown” really gets to me at times. But I’ve learned to focus on what I DO know and just take it the old “day at a time”. I have found this site to be my best resource for information, guidance, and support. I haven’t posted much myself but the advice I’ve read has been invaluable! I wish you a speedy and easy recovery from your surgery
Tabytha
Sam,
I, too, was told the same thing this year! It is a scary scary thing to hear. That was only 3 months ago on July 24th. I feel that my doctor was a little hasty in his prognosis. I am currently on the same chemo that your dad is. I have read the study that my onc got his information from. I was so scared at first. This site has really helped me understand more about my situation and where I really stand. I got a second opinion very quickly and, while there is still no cure for me, I know that I’m going to be here longer than a year. There aren’t many options out there RIGHT NOW to treat this canccer. BUT there are things in the works. You will find trials here that have helped some people, some have also responded very well to the Gem/Cis protocol. No two people are alike. You guys just can’t let the doctors get you down. Yes this is a rare cancer, yes it is SO scary, and yes you are both going to have good and bad days trying to handle this. Stay informed, don’t be afraid to research and ask questions and make sure your dad is in charge of his treatment. Don’t let doctors brush off your concerns. I wish you all the luck and I will be praying for your family as well!!
Cillie/Tabytha
Thanks so much for the responses!!! I feel like I need to print these and take them with me lol
Sorting through the various treatment options myself is a journey I’ve really just started. There just seems to be so much out there and, at the same time, so very little!
After the experience with my current Onc, I am definitely looking to take a more active approach to what is done to me and what I have to say about it. (he’s not horrible by any means, just not what I need right now I think)
Duke I feel like your advice was exactly what I needed to hear right now. I’ve been so afraid to really research anything in depth these last couple of months because I was afraid of what I would find (or not find). Joining this site was my first step to facing that fear. I absolutely LOVE the “imaginative Care” stamp idea and when you make that one can you please mail me one?? hahahaha I’m gonna stamp that thing on everything! So how did you know about my WoW character?? Was it from the forum post or the article online??? Me and my husband just totally got a kick out of you recognizing the name.
Lainy I just love to hear that chemo has cleared out mets in some patients! I’m happy to know that your last experience with a Tabytha was a good one!
Okansas- everyone keeps telling me how big MD Anderson is! I’m pretty excited to see it, although it sounds a little intimidating. I’m going to work on making sure my voice is heard in that big place
I have to say that I already feel like I’ve come to the right place!! I’m so glad I finally took this step. We are all in this together in a way I suppose
It’s nice to talk to others personally affected by this.
