Hi! New member here -Tabytha
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Cillie –
You are a tailor and an herbalist. Good choice on the second. Nice threads on the first, but can’t say I love the hat. (And a recent BSN graduate in real life.)
Can’t wait for an update.
Duke
Dear Cillie, just want to say you are a fast learner and this last post is just what we wanted to hear. YOU GO, GIRL! MDA is very user friendly and you are not going to have a problem there. Unless you feel better taking a Megaphone! I can’t wait for your visit either!!! BTW when one feels that their ONC does not make them 100% secure in their feelings it is def time for another opinion!
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.Dear, Dear Margaret, so good to see your smiling face. Hope you are doing well in your “New Normal” as I call it. So good to see you here and thanks for dropping in.
Duke. aggressive is excellent!
OK – how about aggressive?
Tabytha – you’ve got to fight this. Reading your post tells me you are a fighter. That multiplies the effectiveness of any treatment. I don’t know anything about your WoW character Cillie but I’m sure she fights with every talent, spell, and weapon at her disposal. Follow her lead.
Duke
Big hug to all three of you.
Tabytha — all the best to you on your second opinion at MD Anderson. It’s a big place, with lots of very busy people. Follow Duke’s advice and ask questions, questions, questions. You are getting great advice here. Keep up your great, strong spirit. Don’t give up!
Duke and Lainy, I thank the Lord for both of you, for all the spirit and wisdom and strength you bring to each and every one on this board.
Margaret
Duke, Militant is not a great word to use lately! To me you are a Hero and a warrior and tell your wife to forgive me but I just love you!!!!!!
First thing: Check the heel of your right foot. Is there an expiration date stamped there? If not, wrap that “12 month” stuff in a pretty box and return to sender.
I was diagnosed about a year before you. My onc told me if I didn’t have chemo I had six months. I’ve been on chemo since and my main tumor in the liver dropped from 19 cm to 10 cm. Mets to lungs and lymph nodes are pretty much unchanged. I feel it’s time to go on the offensive and am getting a second opinion on treatments from Dr. Steven Alberts at the Mayo Clinic. Cis/carbo seems to be a first choice for initial treatment for 8-12 rounds. Ask what your onc thinks about getting genome testing from someplace like FoundationOne (not an advertisement or endorsement – sample has not yet been sent). My onc brought that up last week, after 14 months of treatment. Push your onc on how many CCA patients they are treating and who they are using for peer reviewers. It is your right to get the best treatment you can.
Everybody IS different. But, as Lainy said, Attitude is everything. That will get you through the fears in the middle of the night. Get yourself a strong support group. Surround yourself with positive people. (You can’t go wrong starting with this site.) Realize that there will be clueless people who don’t know what to say, and will generally say the wrong thing. Forgive them and forget them. Avoid them if possible.
When talking with your doctors, make sure you fully understand what they are saying. It’s your life. You can’t drive the train but you sure as hell can ring the bell. Be a participant, not a passenger.
I’m outspoken and a bit of a militant, so take what I say with a grain of salt. I’ve got “Palliative Care stamped on my folder, too. I feel like going there one day with a magic marker, crossing that out and writing “Imaginative Care”.
Wishing we share many future July anniversaries,
DukeDear Tabytha, welcome to the best place to be for CC support. Yes, you are one of our youngsters and I just have never understood how this could be. You are doing the best thing by getting an opinion from MDA. And don’t shy away from a 3rd or 4th opinion either. Go until you are completely satisfied. I LOVE your attitude and wish you could bottle and sell it or give it away. Attitude is everything! Please let us know how your visit to MDA goes and keep us updated on your progress as we truly care. BTW I knew one other Tabitha (how she spelled it) in my long life who worked for my EX many years ago, many years! But I totally just loved that woman so it sounds like you Tabytha’s are pretty much alike.
P.S. We have had other members who had mets like you do and the Chemo cleared those out.Well, I want to say it’s nice to meet you all, but I certainly hate the circumstances of our meeting
I was diagnosed on 7/24/14 with mets to my lung, abdominal lymph nodes, and a 12 cm tumor in my hip and a 12 cm tumor in my liver.
I was told I have 12 months!! DUN DUN DUNNNNNNNNN!!!!! I’m 33 years old and I don’t accept this!! (not that anyone at any age should!!)
So they put me on Gem/Cis. It’s considered “palliative” as the dr doesn’t expect it to do anything spectacular. I have had 2 cycles so far (6 weeks total, 2 weeks on 1 week off) . I have had almost no symptoms from the chemo so I feel very lucky. Bloodwork has been great. No pain (except the pain in my hip that initially took me to the Dr. which made us all aware of this mess going on), no nausea or vomiting. Just some fatigue on a day or two. So I feel pretty lucky there.
I’m going to MD Anderson on the 29th of this month to get a second opinion and to get CT’s to see how the tumors have reacted to the chemo I’ve had so far. I’m hopeful that they shrunk. I’m scared that MD Anderson is going to say that this is all that can be done because of the metastasis. But I remain hopeful and optimistic!!!! I’ve absolutely loved reading the success stories you have all shared on this site so far and I certainly hope to share my own milestones along the way!
Tabytha
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