Viewing 15 posts - 1 through 15 (of 29 total)
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  • #14450
    stacie
    Member

    Lisa,

    Your latest post was shocking. A couple of things. On the general information page of the website, you will find the information for T-Gen, you may want to have both of your brothers have biopsies sent and tested there to see what they can tell you. Mark’s insurance covered this procedure.

    The interesting thing which may be helpful to your family is that most of the chemo and procedures you will be looking at will be the same because cholangio borrows a lot of information from pancreatic cancer because they are both in the hepatobiliary area. This will make your research a bit easier as it will serve both of your brothers.

    There is quite a bit of information on whipple procedures on the website, just use the search.

    Lisa, so sorry about the latest news. Please keep us updated. You and your family are certainly in our prayers.

    Stacie

    #14449
    ukmember
    Member

    What a terrible shock for all your family. My thoughts and my prayers are with you all.
    Patricia

    #14448
    mybrossis
    Participant

    I there so we have been busy with life this summer and I have not been on here as of late, My Brother has started chemo and is on his 4th week so far. He feels good other than some back pain but no real sickness to speak of. He had done so well that the doctor added an extra pill. (Xeloda)
    So here is the twist to my story…David is 36 he was told about this now 4 months ago, in the last few months my other Brother whom is 34 as been having the same symptoms….and on Thurs. we found out that he also has Pancratic Cancer that has gone to the liver. What a shock…I am not really sure that I can fully comprehend what has gone on the last week….It is almost surreal. I guess that this is the true test of ones ability to cope with life.
    We are optimistic and are going to look into the genetic factor to all of this….anyone knows anything I would love to hear from you…
    Also what can you tell me about the whipple procedure?? I am wondering about it and if anyone has done it???
    Well I will leave things at this for now…Hope to Hear from someone!!!!!
    thanks….Lisa

    #14447
    caroline-stoufer
    Participant

    Dear Geoff, Peter, Rick & Stacie-

    Geoff, I haven’t heard of anyone for whom Sorafenib has worked. You might want to read the Martin family blog – she did it for a brief time. It does work really well on renal (kidney) cancer. I really wanted to stick with it despite the nasty side effects, and I don’t think they really gave it a chance to work on me. The trials have very set rules, so I got booted off when my tumors had grown beyond the limits set by the trial. Another person with CC died earlier this year who was on Sorafenib. And another young man from the west coast – can’t remember his name – also had to go off it as well – it didn’t seem to be working for him. I have a picture of me with the rash it caused, and if I can find a way to post it on my blog, I will. As for Co-Q-10, it is a coenzyme and I think it is an anti-oxidant, but I’m not sure. Can anyone out there answer this?

    Peter & Rick – Rick, I e-mailed you about copying my very long post to a new topic under the treatment forum called “Treatment Summaries”. I thought this might be a good place where patients could post a summary of their experiences, so we could see what different people have tried and what has worked.

    Stacie – thank you for the info!

    -Caroline

    #14446
    stacie
    Member

    Caroline,

    Thought this might interest you since you’ve had trouble with hand and foot.

    Retrospective study of capecitabine and celecoxib in metastatic colorectal cancer: potential benefits and COX-2 as the common mediator in pain, toxicities and survival?Lin EH, Curley SA, Crane CC, Feig B, Skibber J, Delcos M, Vadhan SR, Morris J, Ayers GD, Ross A, Brown T, Rodriguez-Bigas MA, Janjan N.
    Department of Gastrointestinal Medical Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX 77030, USA. elin@mdanderson.org

    OBJECTIVE: COX-2 activation may mediate capecitabine induced toxicities, eg, hand-foot syndrome (HFS) and colorectal cancer progression, both of which may be improved by concurrent celecoxib. PATIENTS AND METHODS: From October 2000 to December 2003, 66 patients with metastatic colorectal cancer received concurrent capecitabine at 1000 mg/m/d b.i.d. and celecoxib at 200 mg b.i.d. (XCEL). Twenty-four patients were chemo-naive, 42 patients were second-line; while 34 had XCEL with radiation. RESULTS: The median duration of XCEL was 7.2 months (range, 1.5-38 months). Ninety percent of Grade 2/3 HFS (17%) occurred after 6 months and incidence of grade 3/4 diarrheas was 8%. The overall response rate was 38% (95% confidence interval [CI], 26-51%), with 11 patients (17%) achieving complete responses and 2 patients (3%) with near complete responses. Six patients (9%) become resectable after sustaining treatment response. The median progression-free survival (PFS) and overall survival (OS) was 8.3 months (95% CI, 7.0-11.0 months) and 22 months (95% CI, 17.8-31.5 months), respectively. Improved median PFS of 14.5 months (P = 0.0001) and OS of 31.5 months (P = 0.005) were noted in patients with normal lactate dehydrogenase (LDH) levels (n = 37) than patients with high levels of LDH (n = 29). CONCLUSIONS: XCEL integrating radiation may improve response rate and survival and reduce toxicities, notably HFS for patients with metastatic colorectal cancer, leading to a randomized phase III study.

    PMID: 16755175 [PubMed – indexed for MEDLINE]

    #14445
    stacie
    Member

    Caroline,

    Thanks for the update. I wish everyone would post a good update once a month so we knew what people were trying and how things were going (I know this isn’t subtle – haha). This would give us a lot more information to work with and give everyone some things to look into and research for their own treatment.

    Avastin is not chemotherapy so it will be added not used instead of something else. It works as a boost to chemo (in simplest terms). It has never been shown to work on its own, but in every clinical trial on all kinds of cancer, it has boosted results. Geoff’s oncologist and ours feel the same about Avastin. They also don’t think it adds to the side effects – so this is good news.

    You are already using a lot of alternative treatments but I have been researching something the last few days that I’m very interested in and I will pass it on here. I’m going to post the articles in the alternative section so they can be more easily accessed. The product is called Avemar or “Ave” in the United States (it has only recently been available in the US). There are about 20 articles in pub med (you can reach that site from the general information area here – it is very easy to register and access information). All of them show that this natural product is doing good things where cancer is concerned. We are meeting with our oncologist and a naturopath in the next week and we will discuss this product with both of them. It looks to me like this is a natural product (they say it has no side effects, just doesn’t taste too great) that will break the barrier between modern and alternative medicine – at least that is what the peer-reviewed articles are saying.

    Stacie

    #14444
    rick
    Keymaster

    Peter,

    I agree it would be easier to find. However, I cannot move individual posts. I can move topics (the whole discussion) but not this one post.

    Caroline,

    Maybe you’d be so kind to copy this to a new topic? Let me know if you need help doing that.

    Rick (rick@cholangiocarcinoma.org)

    #14443
    geoff
    Member

    Hi Caroline

    I read your latest post with great interest. It’s good to hear about someone who , despite this awful disease, manages an active lifestyle. You obviously have a very positive attitude.

    Regarding Sorafenib which apparently didn’t work for you, are you aware of the success rate in the trials which have been (or are being) carried out ? As I understand it Sorafenib has been particularly succesful with kidney cancers but I’m not sure about others eg CC. The reason I ask is that I’m seeing my oncologist next week and I am preparing a list of issues to discuss.

    Also regarding supplements I’m already taking green tea extract and Omega-3 (in the form of flax oil), could you explain what Co-Q-10 does ?

    I look forward to hearing how you get on with Avastin, hope it works. My oncologist believes that this is one of the most promising drugs around.

    Best wishes

    Geoff

    #14442
    peter
    Member

    Stacie, Rick and Caroline,
    MIght Caroline’s post of her experience be easier for others to find as it’s own thread under experiences?
    -Peter

    #14441
    peter
    Member

    Wonderful post Caroline. Thank you.
    -Peter

    #14440
    caroline-stoufer
    Participant

    Hey Everybody-

    I just wanted to weigh in with my experiences. I am 51 years old and was diagnosed with CC last November when they took a tumor out of my liver and half my liver with it. It took a good two months to recover as the doctors predicted. For the first month, I felt like I’d been hit by a freight train. I had pain, constipation from the pain medicine, and not much appetite. But that second month, I would feel better and stronger each week.

    My doctor didn’t put me on chemo right away so I could participate in a clinical trial. I had a scan in late February and four tumors had already grown back in my liver. They had found cancer in one of nine lymph nodes sampled during surgery. They expected the cancer to come back, but not so fast. As it is in my lymph nodes, it means I need a systemic treatment such as chemo.

    I did the Sorafenib clinical trial in mid March – early May. At my last scan in early May, my tumors had doubled in size and I had new ones, so they took me off the Sorafenib because I had too much tumor growth.

    I started on Gemzar (gemcitabline) the third week of May as a single agent. My oncologist added Xeloda, an oral medication taken twice a day, the last week of June. I was on it for one week, but I got hand-foot syndrome (shouldn’t have worked 13 hours on the 4th of July, but it’s our busiest day of the year), so I went off the Xeloda. Plus I was going on vacation and the doc said I could go off it for that week. I did the Gemzar for 7 weeks and had the 8th week off which fell during the vacation as well.

    At my oncologist’s appointment last week, my liver enzymes were the lowest they’d been since surgery. One even fell in the normal range, and the others were just out of normal range. My CA19-9 tumor marker was up, but not as high as it’s been. So I started on the Gemzar and Xeloda again last week. I’m taking the Xeloda for five days and two off instead of seven days a week. My oncologist feels the Xeloda made the difference in the liver enzymes.

    My experience with Gemzar is that I usually feel good the day of chemo and the day after. (This is usually Tuesday & Wednesday for me.) They give me a steroid before the chemo infusion which I think is the reason I feel good those first two days. Then I usually have a slump for two days – Thursday & Friday. I feel really tired, queasy (but not nauseated), and may have flu like symptoms such as chills, fever, and aches. Then I start to perk up on Saturday, or sometimes as early as Friday night or afternoon. I’ve found since we added the Xeloda, that my slump days are worse than when just on the Gemzar alone. I think my doctor started me just on the Gemzar to get my body used to it, and then he added the second agent.

    My oncologist has applied with my insurance company for Avastin which we may add in a few weeks. I’m not sure if the Avastin replaces the Xeloda or we’ll do all three. I did get approval from the insurance company for the Avastin.

    I also take a multi-vitamin, green tea extract (which my oncologist recommended). Omega-3 Fish Oil, Co-Q-10, and vitamin B -6 which helps with some of the side effects of the Xeloda. I have taken other supplements suggested by a reputable integrative medicine doctor, but my oncologist asked me to quit taking certain ones once I got on chemo. I was taking mega doses of Vitamin C earlier this year, but my oncologist advised me that the Vitamin C may actually enable the tumors to grow more easily, so I stopped that right away. I clear everything I take with him.

    I do try to eat as many raw fruits and vegetables as possible and organic if I can. I still have some ice cream every week. I try to eat fiber, too. Berries are supposed to be good and any fruit or vegetable with deep, intense color. I did meet with a nutritionist at my oncology center. I was avoiding red meat, but since starting on chemo, I’ve been slightly anemic, so I do include beef in my diet again and my hemoglobin has held stable. By the way, the American Cancer Society is an excellent resource for info, and if you come to America, they may be able to provide assistance with travel costs. If your country has a cancer society they may have some of the same info or travel assistance.

    Additionally, I’ve been taking Zoloft, an anti-derpessant, for about two months now, plus I attend a support group for women with cancer at my oncology center in Grand Junction, a two hour drive from us. I have started a cancer support group in my own community and we will meet for the first time on August 18th. I do have a blog on this site, and I have started a memoir about my cancer experience. Also, this website is excellent and I don’t know what I’d have done without it. It’s also good to check clinicaltrials.gov every so often for new clinical trials.

    I have taken Ambien to sleep when needed, but that was primarily when I was on the clinical trial, broke out in a bad rash and was on steroids (which kept me up all night) to combat the side effects.

    I had lost about 25 pounds since two years ago, but I’ve gained 5 back. My appetite is usually good. Just a little queasy sometimes after chemo on those slump days. I’ve taken Kytril for the nausea and I have two back up nausea medications that I’ve never taken. I try just to take Papaya enzyme for the nausea as it is usually mild and the Kytril doesn’t really do that much plus it can give you a headache. I actually feel pretty good these days. I do have pain in my abdomen. I don’t know if it’s from the surgery, my liver being enlarged, the tumors or possibly all three, but it’s not that bad. Occasionally, I’ll take Tylenol for the pain. The oncologist said to take Ibuprofen only sparingly while on the chemo.

    A friend of mine who is HIV positive and has been on medications for 12 years told me to learn to embrace the medication, even with all it’s side effects, because it keeps us alive. That advice has helped me on many occasions.

    Lastly, I think oncologists have a duty to give us the worst case scenario in case that happens for us, but I have a very strong attitude and lots of support from family, friends, and my community. I sometimes just say to myself, “I’m not leaving this world until I’m ready!” I have lots of hope, but I’ve also accepted the fact that this disease will probably overtake me at some point and I have peace about it. But I still plan to keep fighting. I believe miracles happen all the time. And if you’re feeling good, it’s okay to have some days of denial about having cancer.

    I still try to participate in life as much as I can – I’m in a melodrama next week and I’m in writing workshop this week. I’ve given up a lot of volunteer activities and having cancer is a great way to fade out of some organizations that took more of your time than you wanted. I only allow myself to feel self-pity while I’m in the shower, which I have done sometimes – why me, why did I get this, what caused it, what did I do to deserve this? I don’t want to waste any of what time I have left on a lot of negative feelings. I do allow myself a good cry sometimes, but I seem to need that less and less. I have felt devastated at times – like when I was first diagnosed with a tumor in my liver, when the tumors grew back so fast after surgery, and when I had to go off the clinical trial.

    My husband has been incredibly supportive. I try to keep a good attitude, not just for myself, but also to make it easier for him.

    So, I hope this helps.

    -Caroline Stoufer

    #14439
    alison
    Participant

    Geoff

    Thanks for info .We asked for scans today and will have to put it in writing and will then get in touch with Prof Lodge , I gather we write to him and send scans etc ,we live in London , but no matter . Good luck with scan

    Alison and Jon

    #14438
    geoff
    Member

    Alison

    My surgery was done by Prof Peter Lodge in Leeds. I can’t speak highly enough of him. My tumour was very advanced and although Prof Lodge achieved clear margins I now have metatistic disease which is being treated by chemo.

    Side effects with the Gemcarbo regime aren’t too bad. Main problem has been chemo-induced anemia which has required a couple of blood transfusions. In addition I am usually very tired the day after chemo. I have a CT scan in a few days and will find out whether the chemo is being effective.

    Good luck

    Geoff

    #14437
    alison
    Participant

    Geoff
    Thank you for the info .
    We are going to the hospital for Jon,s chemo tomorrow and are going to ask re combination therapy , the carbo platin . we were pleased to see you had your tumour removed and hope you are doing well . Someone else on this site sugested Prof Peter Lodge in Leeds as a agressive surgeon and we were wondering who did your surgery ? as the hospital Jon is under has said this is not a possibility . We are not really sure what stage Jons tumour is , as he has no symptoms at all , it was only discovered as he had a stomach bug last July and hisliver was enlarged

    How are you feeling with the Gemcarbo ?

    Alison

    #14436
    geoff
    Member

    Alison

    I am a CC sufferer based in UK. From my own experience of this disease I would comment:

    (1) The ABC01 trial in UK compared Gemcitabine alone vs Gemcitabine with Cisplatin (Gemcis). The trial is still running but initial results show that Gemcis gives signifacantly better response rate than Gemcitabine alone. I am currently on Gemcitabine with Carboplatin (GemCarbo) – carboplatin is a 2nd genration of Cisplatin (less side effects) – and this is under the NHS. Suggest you ask Jon’s oncologist about this and if necessay find another oncologist.

    (2) Some surgeons are reluctant to operate but it’s the only route to extended survival. Depending of course on how advanced Jon’s tumour is you can find aggressive surgeons who will operate. I’ve been through this and my tumour was removed last October.

    Good luck

    Geoff

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