My Year+ Story, so far
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Hi Adopst and welcome. Your illness seems to mirror what I went through, and I will tell you that you are in the best possible place right now for support and education.
I haven’t been on this site too long, but was diagnosed in March 2009. I didn’t know ANYTHING about CC then, and only decided to become educated when a second round of CT scans in January also showed returning tumors in the right lobe and possible mets to the lungs (too tiny to biopsy, and too tiny to show up on PET scan).
I had very little symptoms when diagnosed….I thought I had an ulcer and/or gallbladder problem that were very minor, and no jaundice. My liver function tests didn’t show anything unusual either when blood tests were done for use of cholesterol meds.
I had 8-10 tumor “deposits” in the bile duct with the largest being 16 x 7 x 7.5 cm. My surgery was on April 1, 2009 with 40 % of the left lobe and partial right lobe being removed. Another tumor in the right lobe was “burned”. Cancer was detected in 1 lymph node out of 25 that were removed and tested.
I had treatments of Gemzar and Cisplatin then CT scans showed no signs of cancer. January 2010, a second round of CT scans shows possible mets to my lungs and the burned tumor returned (2 x 2.5 cm) with another one (1.5 x 1.5). I just finished treatments of Xeloda with Oxalyplatin and know the pain you mention with the hands and feet. I haven’t had a hand/foot symdrome from the Xeloda, just Neuropathy in my feet and hands. I sleep with a pillow under my knees propping up my heals and one under the sheet so my heels and toes don’t touch the bed or a blanket that would cause more pain. I haven’t found anything else that helps the daily pain from this.
Now I’m waiting for my referral to go through my insurance, so I can again get the next CT scans to see if the chemo worked with anything. My surgeon and oncologist are out of the University of Chicago Medical Center.
I haven’t heard of Zadaxin, but will be doing research on it shortly since you mentioned it. I wish you continued success in your treatments, and will also look into the other med. that you are taking, Avastin, and the SIRspheres. I did not have radiation after surgery because my chemo. oncologist “didn’t think it was necessary”. This is the reason I’m on this site now and very glad I found it. The radiology oncologist however, asked ME why they didn’t do radiation therapy right after surgery. It was brought up at a follow-up visit before the cancer returned, and I was told it would do too much harm to other organs to do it then. They may take a different approach now.
Glad to have you on this site, and welcome hearing about your treatments and successes. This is a tremendously helpful website with absolutely wonderful, caring people involved, of which you are now one of.
Linda Z.
Welcome Adopst to the most wonderful group of people (if I do say so myself). As a group, we are a great resource for emotion and mental strength as well as a deep well of information on this cancer. Education and information along with a fighting spirit are the weapons needed for this particular battle.
I am also looking into SIR spheres if my external beam radiation doesnt work. I am happy this treatment seems to have done you some good.
I know that sometime soon, something is going to come around. Things are in the pipeline so they say. I think like you, I am not too concerned with living with the cancer now. We can try to co exist with it until the pipeline finally spits out “the” treatment we are waiting for. We all just need to hold on until then. I like to tell people that yes, I know I am terminal NOW but that doesnt mean I will be in 3 years. Who knows whats around the corner, but I am going to do my best to be there when it does.
Anyway, let us know how things go.
Kris
Hi, adopst and a big Welcome to our Family. It sounds like you are already doing superb and we certainly want to see that continue. I think Doctors all have different stances on trying new things. When we first met Teddy’s ONC he was sure to tell us that he had no problem with Trials or etc. and that while he does not do that personally he knows ONC’s that do and it would not be a problem.
SFO is our favorite city to visit. Favorite restaurant Alioto’s on the Wharf.
Keep up your good work and your attitude is excellent which helps a lot. Please keep us posted and no letter is too long!Hello adopst….I would like to follow Gavin in welcoming you the site no one wants to belong to, but everyone is happy to have found. (I am also from the San Francisco area.) We like long stories so please, write to your hearts content. Many of our members encountered the side effects you are describing as they are fairly common with the type of chemotherapy you are mentioning.
Kris once pointed out to stay realistic and optimistic and I believe this to be a great statement. Although, the likelihood of continuous therapy is high there is however, always something we are hoping for to be discovered and in many instances it is right around the corner. And, for some unexplained reasons, at times, as it happened with several of our members the tumors have become inactive. You may find much information posted by using the search function on the top of the page simply, by entering a key word. And, as Gavin has mentioned you will find tons of support and information sharing by our great members.
I am glad that you have found us and I am looking for much interaction coming our way.
Best wishes,
MarionHi adopsf,
Welcome to the site although, I am sorry that you had to find us all. And thank you very much for sharing your story with us all and I know that it will help someone. We are all a very friendly bunch here and I know that you will get a ton of support and help from us all. Please feel free to ask a load of questions and I know that you will get answers from those that can help. We also have a great search forum function here that may be of use to you with the specific questions that you have. I can’t help you with these questions as my dad never had that type of treatment, but I am sure that others will be along soon that can help.
My best wishes to you,
Gavin
I was diagnosed with CC in April, 2009 at age 50, when a nine-centimeter tumor was removed from my liver’s right lobe. Odd thing is that I was feeling completely fine when blood work showed my liver functions to be a mess. I followed the surgery with four months of chem using Gemcitobine and Cisplatin. While a scan half-way through it showed no recurrence, one in Dec. 2009 showed several more tumors in my liver and a few nodules on my lungs. I had SIRspheres at Univ. of Calif. San Francisco (where I am being treated) which was highly effective in killing the tumors it reached. Unfortunately, the intervention radiologist felt some of the tumors weren’t treatable in this manner and they remain. I am know five-cycles into chemo using Xeloda and Avastin. Two recent scans show that things in my liver and abdomen are stable and that there are a few more nodules on my lungs. We suspect the nodules are cancerous, but my doctors are unconcerned about them because they are so small and can exist peacefully in my lungs. So, good news on these two new drugs’ efficacy.
It looks like this drug combo will be a lifetime thing for me, maybe with some alteration if I can go for awhile having good scans. I am encouraged but remain nervous. The side effects are manageable but I’d love them to go – soreness in my palms and the bottoms of my feet and fatigue. I get acupuncture weekly, soak in a Chinese herb brew and take some herbs orally, which I think does help. I’m also managing the hand/foot problem with highly padded shoes worn with padded gym socks, definitely a step way down in fashion for me but it enables me to walk and be fully functional in my life, and lost of creams and ointments. Anyone have any other ideas?
Has anyone heard of or tried Zadaxin? I’ve read about it as a drug that boost the T-cell count to enable our bodies to better fight off tumors. My doctor says its untested and not available, but others tell me there are doctors who will prescribe it.
Best of luck (and it takes a lot of that) to all reading this.
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