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  • #701
    theonlychris
    Member

    Hi All,My Darling Sister Gail is now about 3 months post Op. She has remaining lesions in her abdomen, lymph nodes and maybe liver. Over the last few weeks she has been experiencing what she describes as sharp contractions of her abdomen which are really knocking her for six. Has anyone experienced anything like this? On a positive note she is feeling okay otherwise, though tired, and has started Chemo last week. She is on the ABC02 trial though has been asigned to Gemcitabine only. A mixed blessing really after I read here that the Cisplatin element of the combined treatment is not well tolerated – I think she would have given up if the side effects were severe. At present she has had very few side effects from the Gemcitabine apart from being tired. Much Love to all. Chris XX

    #16861
    ara81
    Participant

    My mom is also on Cisplatin and Gemcitabine. After almost two months of this combination, we’re very close to throwing in the towel with this particular regimen. I think those stomach pains you described are very indicative of what cisplatin can do to one’s digestive system. They say the first cells to be killed off during chemo are the ones that line your stomach and that can wreak havoc. My mom’s lost so much weight and even eating something like a banana can make her stomach hurt. Her oncologist’s suggestion is to eat less fruit. Sounds crazy but I suppose it can aggravate stomach problems somehow.

    And as far as the lack of optimism goes…I think cisplatin definitely induces depression, no matter how strong-willed someone can be. The break will absolutely do him some good, even if it’s for a short time. My mom is taking a two-week break and we could not be more relieved for this short “recess”.

    I read in a NY Times article that cisplatin has been known to literally melt away tumors. Okay, so maybe that was based off of testicular tumors but so what…it was an encouraging phrase that I remind myself of when I wonder if cisplatin was the right decision…

    All the best,
    Abigail

    #16345
    jeffg
    Member

    Hi Abiail, Sorry to hear about your Mum’s troubles but they do sound pretty standard to the chemotherapy world. To answer some of your questions…. Yes it is normal for the hair to start falling out within a week. Gemcitabine and cisplatin is known for hair loss for alot of people. I had a thining out but did not loose all. Yes it is definitely the right thing to do with stopping or not giving chemo when blood counts are to low. I have had to delay a week a couple times two weeks because of low counts. I highly recommend having blood checked weekly while on chemo. Yes I have had to get rehydrated several times and have had to give my self injections of filgrastin due to being nuetropenic ( low white bloods cells in your bone marrow). Plus you need to keep an eye on your platelets as they can go low and danger of not being able to control your bleeding should you get cut or bruise real bad. Xeloda is a form of chemo but normally taking orally. Your oncologist should know exactlly what your taking and when. Especially if starting a new chemo regimen. To much toxicity from these drugs can cause alot of problems. CT Scans are recommend every 2-3 months to see if tumors are shrinking. Just because your CA 19 marker is showing good signs of going lower doesn’t always mean the tumor is shrinking as well that may come a little later or prove not to work. Get yourself a little calendar that has room for notes and carry with you just in case there is questions of when and what. I hope I’ve answered your questions. And I wish your Mom and you the best on this unfortunate roller coaster ride.
    God Bless,
    Jeff G.

    #613
    ara81
    Participant

    Hi everyone,

    My mom has encountered so many problems with her new round of chemo and so I’m turning to you guys for some advice. She had a first round of Xeloda for six weeks, Monday-Friday, and tolerated it very well. Her oncologist’s nurse said she could discontinue Xeloda since her radiation therapy ended. Three weeks ago she started gemcitabine (once a week for three weeks, one off) and cisplatin once every 3 weeks.
    She had the port put in on Monday and came in for gemcitabine and cisplatin today. Much to our surprise, her blood tests showed that her blood cell counts were too low to get her treatment. Instead, she will receive some shots tomorrow and the day after to boost her cell count. We’re bummed (to say the least) but at the same time we’re wondering if she should go back on Xeloda, which did reduce her CA-19 marker significantly. Before she started this new chemo, her doctor did say she could have stayed on Xeloda.

    Have any of you heard of skipping a treatment for this reason? Did any of you take any alternative immune boosters during chemo? That’s something else we’ve considered but there’s just so much out there that claims to “work”. And finally, her hair has just been falling out in clumps…although we’re not worried about the whole vanity aspect, I was wondering whether after just two treatments if that was a little early to be losing so much hair?

    Sorry for all the questions…just so much to think about.

    Abigail

    #15043

    In reply to: Chronotherapy

    glightfoot
    Member

    Researching more on chronotherapy, here’s a link to a mice study using Gemcitabine and Cisplatin,
    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Display&DB=pubmed — this is not displaying the address correctly– after the word “query” it should read “.fcgi?CMD=Display&DB=pubmed” — so try cutting and pasting the url together.
    These are the chemo drugs I am using at this time.

    A related idea is having fixed-rate dose of chemo — which could be getting chemo over a longer period of time or having an infusion pump so that they try to keep a constant level of chemo in your body. http://www.biomedcentral.com/1471-2407/5/61

    G

    #14813

    In reply to: Tarceva

    dexter1
    Participant

    My Husband has been on Tarceva for two months. Has had no new side effects.
    He had 40 treatments of xl119 /5FU study first and was pretty exhausted going
    into Tarceva. He had a CT scan today but we will not get the results until 11/22.

    He was diganosed 10/10/05 with Cholangiocarcinoma Bile duct that spread to liver and then spread to the Lung in July 06 so had to come off the Clinical Study He had
    5 to 10% shrinkage in May on the xl119 5FU but then found out it had spread to the lung in July o6.

    We had a choice of Tarceva or Cisplatin and Gemcitabine, hoping for less
    side effects we went with the Tarceva.

    #14848
    jules
    Participant

    cps

    chemo options in the uk are limited. Most oncologists here regard cc as a rare cancer and consider that chemo is ineffective – they will refer to the lack of clinical trial data.

    We have seen a few oncs in the uk (my dad has cc) Prof Cunningham at the Marsden specialises in gastrointestinal cancers. You may want to consider a clinical trial – the ABC 02 trial offers gemcitabine OR gemcitabine and cisplatin, I believe they have about a 25% success rate (shrinkage of tumor and prolonging life expectancy). There is also the gemcap trial (gemcitabine and capcitabine) – I do not have any knowledge of outcomes here, there is also the XL119 trial in Leicester..

    my Dad had gemcitabine and carboplatin (which is better tolerated the cisplatin) off trial which kept his disease stable however he was quite fatigued during the treatment. It also hammered his bone marrow and because his platelet levels dropped so much he is no longer able to have chemo, however he has changed his diet radically and his disease remains stable and he has a very good quality of life. I don’t want to put you off chemo – what works for one does not neccessary work for another – one thing that I have learnt since my Dad was diagnosed is to ignore gloomy statistics, patients are individuals and what works for one may not work for another.

    #14670

    In reply to: Gemzar & Cisplatin

    jules
    Participant

    alison,

    I am sorry that your mother is experiencing pain. My Dad was on gemcitabine and carboplatin and did not suffer pain, only extreme fatigue the day after chemo, however steriods help with this although he used to feel lousy ‘coming down’ off the steroids. Platin drugs are hard on the bone marrow, although have in general been effective for many patients with cc. Cisplatin is a platin chemo 1st generation and quite harsh, carboplatin is better tolerated (2nd generation) and does the same job, it is newer then cisplatin and oxylplatin is 3rd generation. Maybe your mum would be better off with a newer platin drug that is not so harsh? – you should discuss this with her oncologist.

    Good luck, Jules

    #14706

    In reply to: Hello Everyone

    mallieg
    Participant

    Hey jules,

    We are located in Cleveland, OH. Our oncologist, Dr. Afshin Dowlati, is actually the doctor who is heading the international trial our mom was participating in. It was his recommendation to start the Gemcitabine and Cisplatin next. He has a number of follow up drugs to try if or when this combo fails to show positive results. We have also been doing our own research. This site has helped us so much, not only in our research but emotionally as well. It is so helpful to see that there are many others out there fighting this disease with us. Thank you for all of that info!

    Alison & Mike

    #14705

    In reply to: Hello Everyone

    jules
    Participant

    Alison and Mike

    I am sorry to hear about your mum. Where are you? – I know of one trial in the UK using XL119, I heard that all the patients where taken of 5FU and given the XL119 because the patients in that arm were doing so much better.

    My Dad was on gemcitabine and carboplatin which made him quite tired. Platinum drugs and gemcitabine seem to be the first line treatment for non resectable disease, you should be aware that there are different generations of platinum chemo drugs (ie some are newer and better on the toxicity front then the older ones) carboplatin is not as harsh as cisplatin (2nd generation) and oxylplatin is 3rd generation. Quite a few patients on this site have used oxy. Treatment options vary depending on where you are and whether you have an oncologist who is prepared to think outside the box and try newer breakthrough treatments. This site is very informative – try looking at the chemo worksheets under general info section and discuss all options with your mums oncologist.

    Hope this helps, Jules

    #246

    Topic: Hello Everyone

    in forum Introductions!
    mallieg
    Participant

    Our mom, Pat, age 53, was diagnosed with cholangiocarcinoma in March of ’06. Like most of your stories, the doctors had a very difficult time in diagnosing what type of cancer she had. The doctors first thought she had gall stones, or acid reflux. Then her symptons increasingly got worse. Mom was always full of energy, but she slowly started to get more and more fatigued. Her appetite decreased as well. Then came the abdominal pain followed by the jaundice. Mom was admitted into the hospital. After numerous tests they found her cancer stemmed from the bile duct. At this time we were told that the cancer was in stage four. It had spread throughout her liver and into her lungs.

    She then had to undergo surgery to open up her bile duct. The first try was unsuccessful. This is when we all started to fear the worst. Thankfully, on the second try, the doctor was able to get an external tube through her bile duct to release the bile. She had to have an external bag connected to the tube for a few days. This tube was left in her for more than a month. Then an internal, metal stent was put into place.

    She was placed in a single blind clinical trial. There were two types of chemotherapy, 5-FU or XL-119, of which she would be given one. Her chemo schedule was five days on, followed by a break of three weeks. After three cycles of the chemo, she was given a CAT SCAN. We saw such positive results in that first CAT SCAN! All of her tumors shrank drastically. Therefore, we continued on with this process. Following the second CAT SCAN, the results were positive once again. The doctor even stated that most of the tumors on her lungs had nearly dissappeared. So of course we continued on. Following the third CAT SCAN the results were not good. Just yesterday we were told that her tumors have grown. Therefore, she was taken off of the study. We also learned that she was on 5-FU during this trial.

    Tommorrow, the 4th, we are going to start a new treatment. She will be given a combination of Gemcitabine and Cisplatin. We are all hopeful this combo will work.

    Our mom is such a fighter! She inspires us each and every day. Never give up hope!

    Alison & Mike

    #14466

    In reply to: hey out there

    geoff
    Member

    Alison

    I wish you well in your consulatation with Prof Lodge, he is a great guy and really easy to get on with, and he’s a brilliant surgeon. I believe that resection is probably the only route to cure, from what I remember reading from Jon’s posts his tumour is at a fairly early stage so I would hope for both of you that is is resectable.

    Regarding chemo, I’d just mention that Gemcitabine+Cisplatin is recognised as being more effective that Gemcitabine alone (this is also shown by early results from ABC02). And you don’t need to get these via a trial, my oncologist put me on Gemcitabine+Carboplatin as the first-line chemo regime (he says that carboplatin is a 2nd generation cisplatin). And my latest scan shows slight shrinkage of my Lymph Nodes (metastatic disease – my tumour, which Prof Lodge removed, was very advanced and he was unable to get to all of my Lymph Nodes).

    Anyway good luck

    Geoff

    #14436

    In reply to: My Brother

    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

    #14430

    In reply to: My Brother

    stacie
    Member

    I want to agree with the previous posts that you are in a good position if your brother was considered a surgical candidate. Now, the crucial thing for him becomes the systemic treatment with chemo.

    However, you need to give another try to get a combination chemo for him. Your best bet will be to combine gemcitabine with 5FU/Xeloda (same drug administered differently) or one of the platins (Carboplatin, Cisplatin or Oxaliplatin) there is a lot of information and studies on these drugs. Start pulling them up and work with your insurance or oncologist now to get him on some kind of combination of drugs, he will have a much better result if your oncologist will do this.

    #14359

    In reply to: Intro , I suppose

    jules
    Participant

    jon,

    my dad was offered to take part in the abc02 trial – he drew the gemcis combo, we then found prof lodge and so my dad dropped out of the trial before he started.

    my dad is currently on gemcitabine and carboplatin which he is tolerating really well. carboplatin is a 3rd generation platinum drug so better tolerated then cisplatin.

    The best thing to do with regard to getting second opinions is to send the scans and an up to date report to the consultant concerned. Prof Lodge will read scans on disc. we keep copies of my dad’s scans and notes with us – this is probably the most reliable way to do it. I just send copies wherever needed.

    Good luck – any further queries feel free to ask.

    Jules

Viewing 15 results - 616 through 630 (of 638 total)