New around these parts
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Thank you everyone. I’m glad to meet current patients and survivors. You inspire me to press on and keep blogging too. It’s comforting to be among friends
Janine-Welcome and sorry you had to find us. I read your blog and want you to meet your first CC survivor!! I have been cancer free for 2 years. My miracle happenned at Barnes-Jewish Hospital in St. Louis MO. ( we are #9 in the nation for hospitals and listed as a CC center ) and my miracle worker was Dr. William Chapman.
My battle with CC started out like most with a big”WHAT??”. I wasn’t sick just itchy, how could I possibly have 6-8 months to live. I am alive because I was able to have a transplant, but my story doesn’t end there I ended up having 2!! I am God’s miracle.
I am alive because of God, 2 strangers and Dr. Chapman. Please read my story at thetelegraph.com under christmas miracle. (My FB page Catherine Sims Dunnagan has my story and another Dr. Chapman success story on it).
Cancer has taught me so many things and the main one is “until you walk a mile in there shoes”. I try not to offer anymore, instead like you said” just do it”, just go over and vaccum, who is ever really going to say please vaccum my house!! While I was doing chemo and radiation, I wasn’t “lifetime movie” dsiabled so when people would offer, there was guilt for accepting, but always appreciated when people just did it.
There is HOPE I am proof
Lots of prayers-CathyI just started receiving Irinotecan & Xeloda 2 weeks ago. My oncologist told me up front that my insurance company would not approve this. So, he wrote them a letter and included supporting documentation. They approved it in less then 2 weeks. Needless to say, my oncologist was shocked that they approved it so quickly. Hang in there Janine and I believe your insurance company will approve it, eventually!
Cindy
Dear Janine,
Sorry to hear about your illness, my lovely mother also recently diagnosed as unresectable metastatic cholangiocarcinoma (her complain was typical sciatica!!!), i couldn’t describe how i felt to you?? i have been shocked!!! but i’ll give you an advice STOP reading about survival it is really destructive, simply no body knows when his life come to an end whether he is healthy or not. Trust GOD and be sure that he will cure you as i’m totally convinced that he will cure mom. Keep searching the internet for the last updates and never loose hope and i prefer that any body performs that task on behalf of you to avoid reading the “Painful” words of scientific papers, it is really hard on health care providers to accept that disease, i’m a cardiologist and once the doctor placed the ultrasound probe on my mom’s abdomen i have been collapsed so i really know how do you feel, wish you and my lovely mother very speed recovery.Janine,
I loved reading your blog about what not to say. You so articulately expressed my exact feelings. I really hate the “you are so positive” thing…puts a lot of pressure on me to be positive all the time. Only those that have been through a cancer diagnosis understand how exhausting it can be to always be positive. I actually don’t like the word positive as in “your biopsy was positive”.
When I first started looking at this site, I would look at the faces of cc and then look the ones that were posted by the person (and not by family members) on facebook to see if they were still with us. But I am betting I am not the only one who has done that.
One other thing that has helped me is contacting some of the people on the site via email, connecting with them in other ways out side of this site, and forming some small ‘partners in crime’ networks. We’ve compared CT and chemo notes commiserated with each, gotten advise, and celebrated successes, and hopefully I’ve been able to help them as much as they’ve helped me.
So, I guess I just wanted to say hello, hang in there, and to let you know that the the people on this site are some of the most caring wonderful I know.
Take care-
-Randi-Thank you, everyone.
Pam: Thank you so much! Writing that blog has been soul-saving at times. It’s definitely kept me sane.
I totally understand what Lauren is going through with the weight issue. When I started losing, other than being concerned I was really excited. I had been trying to lose weight for a while and though I didn’t want to lose it the way I was, it just felt nice to get into smaller clothing. I was really disappointed that it came back on so fast. As for the biopsy, I was adamant when they wanted more tissue that we were using my port. I wasn’t going through that a second time. It was terrible.
Lainey: I will definitely take you up on that some time. My husband’s parents live in Apache Junction, so we head up that way periodically. The trial I was recommended for was in Scottsdale at TGen and my oncologist said if this current plan fails he will write me a referral for MD Anderson, Mayo or even Sloan Kettering in Texas if I want.
Thanks everyone for being so awesome. I keep telling my family how excited I am to have found this board.
Janine, I just wanted to remind you I am in Chandler, AZ should you feel the need to meet up and that we have some wonderful Doctors and Hospitals here (Mayo/MD Anderson) should you ever want another opinion. Stay strong.
Dear Janine,
I just finished reading your entire blog. It is amazing. You are a very gifted writer. It is so crazy, the many similarities you have with Lauren. Two that I can think of right off the bat are:
1. We didn’t think Lauren’s IV was working properly before she had her biopsy. It seemed to drip for a while and then no drip. They took her back to do the biopsy and gave her drugs that were supposed to relax her and make her not feel the procedure. She felt them pressing really hard when they were doing the ultrasound and it really hurt. When they did the actual biopsy, she said it felt like they were ripping a big chunk out of her liver with no anesthesia. She was in tears when she got back to recovery and said she will NEVER go through that pain again.
2. Lauren had lost around 40 lbs. before she was diagnosed. Since she started chemo, she has gained back approximately 20 lbs. She has been blessed in that she doesn’t have much nausea. Just a little from time to time. She is quite upset that she is gaining weight though. She is eating normally. We have been visiting Panera quite frequently and we thought it might be the broccoli cheese soup that is packing on the pounds. Maybe it is not being as active. She had a factory job before CC where she was running up and down stairs and lugging a lot of clothes around. For people that this offends, I am sorry. If you have been overweight your whole life, you would understand how exciting it is to lose weight. She would have much rather found an easier way to do it though.
Just wanted to let you know that you are not alone and there are others out there dealing with cancer that are similar to you. God bless you, Janine. I hope you find a treatment plan that will shrink all of your cancer. Take care.
Love, -Pam
Thank you all for the warm welcome! I hate that we had to meet under these circumstances, but I am very thankful to have the added support.
Janine
http://thisthinginsideme.wordpress.comI’ve been reading select pages at random on your blog. Now that’s a blog. Well done. I too have this cancer, at this point all things are looking good, or as good as can be expected while fighting this disease.
And I can say “I know how you feel” I can be up one hour and crying the next one. I try to stay strong for the rest of the family, but something sets the tears in motion.
At first my Onc. mentioned resection, even met with the surgeon and he set a date, but a last minute PET scan put the kabosh on the surgery. No liver infusion pump because my liver was not functioning right per the blood tests. I asked the Onc. if this was the ” worst TV reality show ever? ” ” For 1 million dollars………..how much crap can we dump on this man and his family”
I’ve told the Dr. after asking ???? I just want some hope.
I’ve been on chemo since July 22nd, and the CT scans are showing headway. Thanks to God, family, etc. my tumors are shrinking. Still can’t have the Liver pump as my insides are not plumbed exactly right to allow surgery. Waiting on the next option now.
But I’m living every day, to see me I don’t feel or look like I have this disease. I’m planning on Operation Fish Attack to Key West, Fl in mid Feb. in between chemo and dr’s visits.
You are in my prayers and thoughts, please keep us up to date.
Grover
Dear Janine, Welcome to our wonderful family where you can find the most courageous and caring people from all over the world. WOW! I see everyone was up late last night! We are almost neighbors as I live in Sun Lakes AZ which is 1/2 hour North of Casa Grande. First let me say that I would be glad to meet with you in betweeen if you like and we could do lunch. Please don’t listen to stastistics, we never do. Each of us is so very different and CC hits everyone so differently. I remember when my husband, Teddy had his first PET and the insurance company turned it down, the Doctor called them and after that we had no problems. One more thing I would like to interject here, In Phoenix, we now have MD Anderson at Banner Baywood and we have a Mayo Clinic in Scottsdale which has been gaining at the forefront now in treating CC. You might want to give a thought to a 2nd opinion, we really believe in 2nd and 3rd opinions. I agree with you that writing on a Blog or on this Board is VERY cathartic but I wawrn you we are also overy addicting! In a good way. Please keep us posted as we truly care and again I would love to meet you.
Hi Janine,
Welcome to the site. So sorry that you had to find us all and I am sorry also to hear about your diagnosis. But I am glad that you have joined us all as you will get a ton of support and help from all of us here. When my dad was diagnosed with his CC it was also found too late for him to have surgery and he had PDT done and also had a metal stent inserted to help with his jaundice.
I will have a look at your blog as well, and as Marion says we do have a blog section to the website here as well. I know you said that having your blog was a good place for you to vent, but please know that you can come here and vent also. Shout, scream and vent away if need be and the members here will totally understand. And also, please feel free to ask any questions and everyone will help if they can.
I will keep my fingers crossed for your doctor dealing with tghe insurance company and please let us know how this goes. I look forward to hearing from you more and please know that we are all here for you.
Best wishes,
Gavin
Janine…hello and a warm welcome to you. I am in doubt about the current statistics. The amount of young people visiting our site more then exceeds 30 % of our members. As you may know it takes several years to conduct these studies and evaluate the results, but it won’t surprise me to a different set of numbers within the next few years.
I also am surprised by the denial of irinotecan by the insurance company. On the other hand though, it should not surprise me. Seems that they set they rules of care in this country. (I know that I am exaggerating a bit.) Although, not used nearly as frequently as Gemzar or any of the platins, irinotecan has been used for CC patients for quite some time now. I know for a fact that others have been approved for it. Most likely you are aware of the compassionate use program offered. As far as I know income limit was set at 75 thousand per year.
I love your blog. If ever you care to do so please, post it again in the Blog section of our site. Threads easily become lost in the volume of postings and it would be a shame for others not to be able to read up on your great writing.
In the meantime fingers are crossed for a quick approval and for your age, health, and spunky attitude to be your best friend in the fight against this cancer.
A tidal wave of good wishes is heading your way.
Marion
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