August 8, 2013 at 12:06 am #73441clawlerParticipant
There’s talk of getting a small support group together to meet at a restaurant in New Hope, Pa. Let me know if you might be interested in joining us.
ChrisJuly 17, 2013 at 4:34 pm #73440jeeyoungMember
I think you will be glad that you have found this group of wonderful people who are supportive, knowledgable and also going through the same thing. I’m sorry that you had a reason to seek a group like this.. and you are so very young. But I think you have the right attitude. You already have gone through a lot and seems that you are responding well with your treatments as well. I was told that Cancer is a family disease.. it affects everyone arounds you.. it is great that you have co-patient team. What I’ve learned from this group is the importance of second, third and even fourth opinions! Have you seek another opinion?
Wishing you great sucess with all your treatments and keep us posted on your progress.
JeeyoungJuly 17, 2013 at 1:06 pm #73439fearywingsMember
Thank you all for your warm welcome and great advice. I love that this is the club no-one wants to belong to! I’ll be looking forward to speaking with you guys as I progress through my treatment.
Thanks again!July 9, 2013 at 6:02 pm #73438mparsonsParticipant
Hi Erica and welcome. I truly appreciate your attitude, and think it is inspirational. You are realistic, which does not mean you have given up on your life! Realism is not the same as pessimism and I think most people on this site understand that. I say go work on that doctorate! The very week I was named dean, I was diagnosed, and knew I would not be able to fully realize my dream. All too quickly I am having to transition out of that role, but I will stay involved in the academy as much as I can because it is part of who I am. Keep working on those dreams.
I’m glad that you seem to be responding to treatment. I wish you the very best.
MarkJuly 9, 2013 at 5:42 pm #73437thebompie4Member
I’m with you on being a realist…that’s for sure!
My husband has Stage 4 as well (he’s 44 and i thought THAT was young!)
He was healthy as a horse with hardly even a cold in his entire life.
Best wishes with everything…I have no advice–seems each person
has their very own journey.
I suspect yours will not go down without a HUGE fight!
and that’s GREAT!
(and right? who knew?? Bile Duct Cancer?? seriously!)
That’s what we said too.July 9, 2013 at 5:03 pm #73436marionsModerator
fearywings…..love your signature name. Welcome to the club no one wants to belong to, but is glad to have found. You have come to the right place. Count on our members to support you, help educate you, and share thoughts with you. Know that we are here for you, always.
The significant drop in tumor markers is indicative of the great response to the treatments you are receiving. Given that you have only had four sessions, I would expect a continuous decline of this marker, and that is “great” news. I assume that the radiation eased your bone pain significantly and that the pain is brought under control. Fearywings, I like to compare Cholangiocarcinoma to that of a chronic disease rather than that of a cancer carrying an expiration date. Not that I am not realistic about the severity of this illness rather, I believe we are here to live each and every day. Hence there is no reason not to carry on with your dreams of fulfilling your desires of achievements. Yes, there are obstacles and “fires” need to be extinguished, but you are young, resilient and a “go getter.”
Support groups focused on this cancer are difficult to find however; your husband may find a group focused on colon cancer or liver cancer which may help him interact with others. Have you thought of involving a counselor? Much of course depends on the insurance coverage available to you however; emotional support is very important not only for the patient but for the loved ones alike.
It always is a good idea to retain copies of your diagnoses and all treatments including, physician’s notes. At one point, you may want to obtain a second or third opinion from a center or physician “very’ familiar with this disease. I work with specialists and have learned that many differ with their approaches. Basically though, you would want as many specialists as possible involved in your care.
I am sure that others will be around real soon and welcome you too. Please continue to share with us, let is all hang out (so to say) and know that we care for you and everyone touched by this cancer.
Hugs to you,
MarionJuly 9, 2013 at 4:46 pm #73435RandiParticipant
I love your attitude and I would also consider myself a realist. I am a 3.5 year survivor of stage IIb extrahepatic CC. Had surgery and adjuvant chemo. I was 55 years old when I was diagnosed and was in the process of a career change going back to get my masters degree in mental health counseling after a 25 year career as a software engineer. After my treatment I went back to school and will graduate the end of this year. I can relate to your life attitude for sure!
I am so sorry this has happened to you at such a young age (or any age for that matter) and I wish you the best with treatment. I do not know of a support group in your area. That is one of the reasons for this discussion board, so that people can identify with other people in some what the same predicament.
If you don’t mind my asking, where are you being treated and by whom? Have you gotten a second (or third) opinion as to treatment options and pain management?
I am sure others will come along to talk about experiences that may more closer resemble yours soon.
Take care and please come back and update us on your progress. We really do care.
-Randi-July 9, 2013 at 4:35 pm #73434heatherMember
Oh girl! You sound like a go getter for sure!! I like your attitude. My husband was diagnosed at 44 and it was that a huge shock!!! You will be in my thoughts and prayers. The Livestrong program is a great one that can help you find the support you need. They have been amazing for us with our 6 year old. It is so hard to explain unknown but we have a strong faith in God that gets us through. We also ended up going to MD Anderson to seek their opinion and they opened doors for us that we previously didn’t think could open.
Hang in there!!
we are new to the sight as well!July 9, 2013 at 4:33 pm #73433lainyParticipant
Dear Erica, in a most respectful way…I am in love with you and your attitude!….Welcome to our remarkable family but sorry you had to find us! May I ask where you are being treated? Please keep in mind that we are strong believers in 2nd and 3rd opinions. And, knowledge is the best tool we have for the big fight. As for support groups I would just Google your area OR ask at the hospital where you are being treated. We don’t believe in time limits as we were not born with expiration dates stamped on our feet. I say, put on your pink boxing gloves (trimmed in diamonds) and knock the heck out of it! You have come to the best place to be and please keep us updated as we truly care.July 9, 2013 at 4:29 pm #73432claremParticipant
I am bowled over by your post and blown away with your amazing attitide Your personality runs through every word. I am truly sorry that you have had to find this forum but now that you have you will get reality, support and answers in abundance.July 9, 2013 at 3:36 pm #8586fearywingsMember
My name is Erica and I was diagnosed with Stage IV Bile Duct Cancer on May 10th of this year. I am 27. Would have never known if it hadn’t metastasized to my hip and caused me great hip pain, that the doctor’s couldn’t figure out what was wrong with me. Why would they ever suspect a young healthy woman of having Stage IV cancer. I have tumors on my left hip, sternum, lung, 5-6 vertebrae, liver, bile duct (duh), and lymph nodes. I expect my PET scan looked like a Christmas Tree.
I’ve been through 10 rounds of radiation to my hip and sternum, targeting tumors that were causing me immediate pain. My skin has been burned but it seems to finally be healing like a sunburn.
I’ve also been through 4 rounds of Chemo so far. Seems I’m on what everyone else is on, Cisplat and Gemzar. My doctor is great and I am responding well to the therapy. Haven’t lost my hair. Megestron helps me keep my appetite going strong. The steroids make me a pacing anxious let’s-get-this-over-with wreck during all 6 hrs of chemo. My weeks off from chemo are great but because I had to quit my job, I’m stuck at home, bored, being watched by my super helpful husband and dropped-everything-ran-to-her-daughter mother (handlers).
Found this site reluctantly, searching for more information on just what the heck Bile Duct Cancer is. So far it seems just like me: Rare (I’m a special one-of-a-kind kinda person; Invasive; Complicated.
As far as my mortality is concerned, my doctor can’t give me a definitive expiration date because I’m so young. My CA 19.9 started at 51,000 and after 3 treatments was down to 4,000. He seemed very happy about it and said it was great news. If anyone can really explain why this is great news to me, I would be grateful. Seems like a bunch of numbers to me. My tumors are still there. All over my body. I’m more like, “Let me know when my tumors have disappeared and then I’ll celebrate.” Call me pessimistic. I feel more realistic.
My life had just begun. I’m a teacher and professor and I love what I do. Had a relatively late in life career change and just finished getting my Bachelor’s and Master’s in 4 years while working. I’m a go-getter. I want my Ph.D. This is ruining all of my plans and I hate it. I need plans. I can’t just say, well I’ll keep working because I’ve accomplished most of what I wanted in my life and everything will be great until I die. I’m more the kind of person that would say, “Oh, I have 6 years to live? I can get my Ph.D. in 5, 4 if I kill myself, so yes, let’s go for it.”
Alright. That’s all I’ve got.
I wish the best for everyone out there. If anyone knows of any support groups in South Jersey/Philadelphia for Stage IV people, let me know please. Or a Spousal Support Group for my husband at least. He needs it more than I do.
Have a great week!
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