Search Results for 'gemcitabine cisplatin'

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  • #41685

    In reply to: New member (ugh)!

    ronidinkes
    Member

    Dr. Ghassan Abou-Alfo @ 212-639-3112 Memorial Sloan kettering has a clinical research study Protocol: 0029

    A Phase II study of Gemcitabine & Cisplatin plus Sorafenib in Patients with advance Billiary Tract Carcinomas Naive to Systemic Therapy.

    I spoke with him today, he was lovely, and they are still recruiting.

    Good Luck

    #4010
    justamom
    Member

    My 23 year old son was diagnosed with cc and is on his second round of chemo.- Cisplatin and gemcitabine. I’ve heard about maitake mushrooms used in conjuction with these drugs with good result. Can anyone tell me what the standard dose would be for a young man weighing 245 lbs?
    Thank you so much!

    #3994
    charlea
    Spectator

    I saw a female doctor with a complaint of slight distention just above my umbilicus and slight difficulty taking a deep breath. My regular doctor was out of town and I had a suspicion that I might have ovarian cancer (I am a family nurse practitioner and case managed cancer patients). This doctor took me seriously, did an abdominal x-ray and noted a marked elevation of my diaphragm and referred me for an abdominal/pelvic CAT scan which showed a 4.5cm liver tumor and two metastases in my abdomen below the liver. I saw my oncologist who referred me for a liver biopsy, positive for adenocarcinoma but it was thought to be a metastasis and not the primary. A second biopsy, this time through my stomach to one of the mets in my abdomen, was also adenocarcinoma. Further research showed no primary and presentation of my case at subsequent tumor boards and referral for a second opinion finally brought a diagnosis of presumed cholangiocarcinoma and a first course of cisplatin and gemcitabine was completed with no side effects except fatigue and some hair loss. It did not appear that the chemo diminished the cancers so it was decided to try a chemoembolization which was done on 9 July. A follow-up CAT scan demonstrated a lessening of the liver tumor and no progression of the mets. During this time I have felt exceptionally well and have kept up with most of my activities with no pain, nausea, loss of appetite or any other effect of the cancer. I think my doctors are surprised at how well I have done. One thing that I have done without instruction from my doctors was to take 10,000 IU of Vitamin D3. I was originally started on 2000 IU D3 by my neurologist for multiple sclerosis and was encouraged to increase the dose to 10,000 by a physician doing intensive research on D3 and diseases. I did have a level checked when I was up to 6,000 IU and it was still low normal. Other than that I have kept up a very healthy diet with fresh organic foods and get daily exercise, primarily walking.
    I am now 9 months post-diagnosis and recently saw a radiation oncologist for consideration of further treatment with radiation. However, he felt that since my tumor was receding slightly and the mets were stable that I could take a wait and watch with sequential CAT scans every 6 weeks. To date, that is my story and because I feel so well I have to force myself to remember that I have cancer.

    #3989
    alv
    Spectator

    Hi,
    I’m new to the site – based in Dublin, Ireland. My dad was diagnosed with this terrible disease in May. We were immediately told that it was inoperable and given a horrific prognosis of 3 months without treatment and 11 months with treatment.

    At the time of the diagnosis he had just started experiencing some side effects including weightloss, jaundice & itching. They started chemo almost immediately and is getting a combination of gemcitabine and cisplatin. After two or three cycles they did a scan and both tumors had shrunken significantly – one by almost 50% and one by over 30%. The doctors were very pleased and ordered for the chemo to continue.

    My dad is probably the most positive person in the entire world …I accept I might be slightly biased… Since May he has never complained once – is doing everything he should be doing, has put back on the weight he lost and other than some fatigue has really had no side effects at all from the chemo, also has no effects from the CC since he started the chemo.

    Neither my parents ask questions of the oncologist – he’s not exactly the chatty type but he can keep his crappy bedside manner so long as his treatment plan continues to work. The thing is we have the next scan in late Oct and I’m not sure what to expect. I have really had no experience of cancer before now – to me it would seem logical that the treatment continues so long as the tumors are continuing to shrink / not grow – is that correct?
    Since his quality of life is so good I see no reason to stop at the end of October but is there a set number of cycles that is advisable or where do we go from here?

    thanks for your help..
    Alv

    #3970
    pljc
    Member

    Just wanted to introduce myself to everyone. I was followed for 10 months after a routine colonoscopy lead to a CT scan that showed lesions on my liver. Two CT scans, two MRIs, a tagged red cell study, AFP tumor marker, numerous office visits,,,,months of reassurance that it was not cancer. I had no symptoms. Liver function was normal, no pain, no jaundice. The Dec 2008 CT showed no change, still a 2 cm tumor. The Doc decided to push the next CT out 5 months to May 2009. The May 2009 CT showed a 5x4x4 cm tumor. A biopsy was scheduled 6/04/09 and I rec’d the results, Intrahepatic Cholangiocarcinoma, 4 days later. Ten days later on 6/18/09 I had resection surgery. They removed the left lobe of my liver that contained the 5 cm tumor, my gallbladder, and 5 lymph nodes, negative but exceedingly close to the resection line. After two Radiologists told me that they would not treat me, my Medical Oncol agreed to chemo. I started Cisplatin/Gemcitabine on 08/03/09 and lasted for 8 months until my body said ‘no more’ in April of 2010. Landed in the hospital for 7 days during chemo with a temp of 104.8. Never found a cause for the infection. I feel that I have rec’d mediocre at best care from my local doctors. I rarely saw the doctor and was usually with a nurse practitioner on chemo visits. She never could get my cancer straight even though it was right in front of her. It became a joke,, ‘now lets see, you have gallbladder cancer, right?’ or pancreatic, or colon, etc. My oncologist resigned from my center. The last time that I saw him I made the mistake of asking him to remind me of the recurrence rate for Cholangio. His reply was ‘ You are asking me to recall something that I researched a long time ago when I first met you when you could just as easily go through my dictation and find the answer for yourself’. He walked out of the room and I never saw him again. I had my 1st major anxiety attack soon after that. I was assigned a new doc. She introduced herself and then said that there was no care plan for this cancer. She told me that I was way behind in CT scans(I told her I had scheduled the last two myself). She said that I should be scanned every 3 months and that I did not need the 3 phase liver using the 64 slice machine at the hospital. My scans could be done at the cancer center swallowing the glow in the dark and on the slower scanners. My surgeon didn’t agree with this and sent her a note. The next thing I know I have a new doc. I met with him 3 months later. He walked in, introduced himself, and said ‘I’m sure you are already aware that there is no care plan for this cancer, but we really need to keep a close eye on you’. He then proceeded to push my next scan out to 4 months. That’s when I decided I was tired. Tired of being told that there is no care plan. Tired of doctors taking me on as their patient but obviously not doing any homework on my cancer. Tired of doctors that are so sure of themselves that they take a chance with my life just to prove that they are right. And when a biopsy proves them wrong, they don’t even apologize. I have new Doctors now. I had appts with both of them this week at Duke. Please, please, please, if you are new to this cancer, do your homework and find a doctor that specializes in this cancer. I wonder how different my treatment would have been. Remember the 2 Radiologists that would not treat me? The Radiologist at Duke said that he would have used a beam along all of my resection lines prior to chemo. Now I’ll always wonder if that would have helped! Happy to report that I do have a care plan now…will be at Duke every 3 months for labs, CT and results for the first two years.

    #40822
    linda-z
    Spectator

    Sallypa,

    Just getting caught up on postings here. Sorry it took so long to reply.

    When I had my surgery, I spent 5 days in the hospital and actually did very well with recovery. I have about a 12″ scar across my abdomen which is no where as noticable as it was. Just a little pink. I developed an abscess about a week after surgery and had a drain put in for a week, but handled that well too. I lost about 30 pounds overall due to not being able to eat the “bigger” meals that I was accustomed to. AND I actually needed to lose weight too. However, I gained it back when I began chemo.

    More than a year later, I do feel like there isn’t anything wrong with me, although the chemotherapy did not work. I know that’s not the same for everyone, so don’t feel nervous about that. Chemo may work for your sister even though it didn’t for me. Looking back, my surgeons made errors in judgement that probably caused my cancer to return. The best chance though is that your sister had surgery to begin with. That is at least the first fight to getting this cancer.

    The chemos that I was on was first Gemcitabine with Cisplatin; then Oxaliplatin with Xeloda, and finally a clinical trial of Irinotecan. I tolerated all of these very, very well compared to what I’ve heard others say about them. Whether that means my age was a factor, or probably why they weren’t working, I don’t know. I’m in the process of finding another doctor to seek other treatment options. Don’t give up….don’t ever give up. There is always something new popping up out there.

    I wish you both the best.

    Linda

    #3958
    jemima
    Member

    Hi

    I found out last week that Mum is actually having half a dose of cisplatin each time she has gemcitabine rather than having gemcitabine plus full dose cisplatin on week 1, then just gem on week 2, and then a week off.

    Has anyone else heard of this? Apparently they have done it in the hope that she will have less severe side-effects. I must say it seems to be working as up until a couple of days ago all she had was tiredness. She was sick a couple of nights ago and had some nausea but has started taking anti-nausea meds again which are controlling it fine.

    But will the cisplatin still work as well if she doesn’t get the full dose straight away ?

    Thanks

    Jemima

    #39831
    sharon-field
    Member

    Andy, I’m so glad to read your story. I have had cc about a year longer than you—have had NO problems with my bile ducts, but my original tumor was 13 1/2 cm. I can’t have surgery due to involvement with the great vessels of the liver. I have had cisplatin, gemcitabine, 5 fu, Xeloda, & radiation 2 times. I was fortunate to use the big Novalis machine at the University of Nebraska. No side effects at all from the radiation. What a blessing. So far so good & the tumor is 71/2 cm the last CT I had in early Aug. I am still working full time & have a goal set for retirement in 2 years. I hope I am so fortunate to see that day. Sharon Nebraska USA

    #40451

    In reply to: recently diagnosed

    sharon-field
    Member

    SallyPa, I have gone the same route as your sister. But I will say I have been blessed—Started in Dec 2008- 13 1/2 cm –had cisplatin/gemcitabine—it shrunk—I had to quit the cisplatin, due to hearing side effects, continued w/ 5 fu & gemcitabine—Tried to have a surgery in Philadelphia Jefferson hospital Dr Doria, but my tumor was also wrapped around the large vessels & the surgeon had to give it up on it after he did an intraoperative ultrasound. So more chemo & then in the fall of 2009 radiation. and more radiation in April 2010. I now have a 7 1/2 cm tumor & have had no side effects from the radiation. I got to use the big Novalis machine at the University of Nebraska & I swear that it is wonderful. I work full time & have been able to continue except for some occasional 1/2 days off for the chemo. My goal is to survive long enough to retire. . . 2 more years!! God is Good. Sharon Nebr

    #40021

    In reply to: Juniper tea

    labradorkathy
    Spectator

    Marion, my mom is eating healthy and drinking plenty of liquids. The juniper tea is a once a day thing. I just recently mailed her some dandelion root tea as I hear it thins the bile. A few days ago she had pain in her side and the doctor told her that her liver was enflamed and gave her a prescription of antibiotics for it. The pain went away before she got her prescription filled but she’s going to take them anyway. She is doing great and is enjoying life. She’s getting a portacath on Tuesday as she is due to start chemo again on Thursday. Gemcitabine and Cisplatin I believe are her drugs. She hasn’t had chemo since December 2009. I have no idea why they’re having her start it up again. It sucks living so far from her and not knowing exactly what’s going on.
    Kathy

    #3823
    tk
    Member

    ….. in Sydney Australia.

    I was diagnosed with CC in October 2009. I had a successful resection in November 2009 where my cancerous common bile duct and gall bladder were removed, but a few lymph nodes were found to have cancer cells.

    I completed six months chemo-therapy from February to July 2010, where I had Cisplatin and Gemcitabine.

    A post chemo CT scan found no cancer cells, but I do understand that I have a fair way to go. I will have six monthly CT scans for the next four years, to moniter my progress. And my understanding is that after five years, the cancer would be said to be in remission.

    I just wanted to put this post up, to give patients and loved ones good news and hope. I also wanted to thank the supportive, caring people who keeps this site going for the benefit of everyone who is affected by CC.

    In praising the people who keeps this site going, I don’t want to individually name names, as I don’t want to offend anyone that I may miss. However, I do wish to thank Janet (Magic) from NSW Australia for her just being on this site. I am a bit biased as she is a local Aussie, but I have read some of her posts of how she first got onto this site and how she was encouraged to stay on to support others.

    My mother had a knee surgery last week Janet, to replace one of her old ones. So best wishes to you for your knee surgery.

    As it is often said, knowledge is empowering which is why I am thankful for this site, but also the people on here are just so supportive and caring.

    Prayers and best wishes to you all.

    TK

    #37981
    jemima
    Member

    Thank you all for the good wishes. We are going to enjoy the holiday and then come back and concentrate on Mum’s chemo.

    Kristy – she will be having gemcitabine/cisplatin on a 2 weeks on, 1 week off cycle for 4 cycles. I just hope that she tolerates it well….

    Will be lurking while I am away as I have to take my laptop for work so I’ll be checking up on everyone :)

    best wishes to you all

    Jemima

    #3762
    kimmie
    Spectator

    After hearing last month that Mom’s CC returned after resection and chemo last year, there is a plan in place. She will have a port placed on Friday and start chemo next week (hopefully). The will just do gemcitabine this time (last time it was that and cisplatin) for 2-3 cycles, check the how the tumors respond with a scan, then move ahead with Therasphere.

    I’m really hoping she handles the gem ok this time. She had nausea and fatigue, but it really did a number on her white blood count. They were giving her neupogen, but it was tough for her to go up there every day for 3 days after chemo for the shots. Plus it gave her flu-like achey bones.

    I feel guilty too – we’re supposed to leave Friday for a week in the Outer Banks with my in-laws. I was with Mom at just about every chemo infusion last year, brought her and my Dad lunch every time, and took her home most days. My sister is still here, and of course she’s trying to ease my guilty feelings. I know I shouldn’t, she’ll be fine, but it’s still hard for me. (Catholic guilt I think they call it…)

    Thanks for listening!

    #39897
    kimmie
    Spectator

    Hi there! My experience is somewhat similar to yours, but different treatment. My mother, now 63 years old, was diagnosed with a large liver tumor (8cm x 6cm x 10cm) in May ’09, which had not spread anyhere else. She had the liver resection in July where they said they got “clean margins,” chemo started in August (gemcitabine and cisplatin) for 6 cycles to clean up any microscopic cells still floating around. She finished up chemo last December, and her scan showed no evidence of cancer.

    We were happy for the first 6 months of 2010, March bloodwork was great, even the CA 19-9 marker. June bloodwork showed elevated CA 19-9, and the CT scan confirmed several smaller tumors throughout both lobes of her liver. Chest x-ray was clear. So our plan of attack now is 2-3 cycles of gemcitabine, check to see if the tumors responded at all, then do TheraSphere.

    This website is amazing, and I spend a lot more time lurking then posting. Just reading the boards, searching on a specific question… knowledge is power. I have learned to accept that, because CC is so rare, I do not put a whole lot of faith in the statistics and estimates. Every person is different and may respond differently to a treatment. We heard all those numbers last May, and my Mom is still here! It was tough hearing the surgeon say 6 months with this recurrence, but we’ve since put a palliative treatment plan in place and I do not believe in his 6 month “sentence” anymore. There are some uplifting stories in the “Good News/What’s Working” section.

    It’s hard having your mother go through this, I know. We are an extremely close family. My Mom has 3 children and 5 grandchildren, ages 4-11, plus my Dad (although he has vascular dementia and can’t help a whole lot). Do you have siblings? I couldn’t go through this alone, my sister and I rely heavily on each other, talking at least half a dozen times a day. It helps too that she used to be an oncology nurse and is now a hospice nurse.

    Hang in there and keep coming here for support and learning – these people are amazing!!!

    Kim

    #39893
    linda-z
    Spectator

    Hi there,
    So sorry for you to have to go through this with your Mom, but you are in a great place to get information to help fight this.

    I am 53 years old, and was diagnosed in March 2009. I will be starting a new chemo. treatment on Thurs. You will find as you search many of the posts here, that there just isn’t one chemo or treatment that is better than another. Everyone reacts differently to each treatment. I was on Gemcitabine / Cisplatin first and then Xeloda / Oxaliplatin. Many have responded to one more than the other, but it doesn’t make one better than the other (unless it works for your Mom!).

    You found us here, and that is a great thing. It’s terrific that your Mom did well on the chemo. and had some significant success with it. If there was success with that particular chemo, why would they be trying another type? Also, have you tried for a second opinion yet? Sometimes, it’s not necessarily that one doctor is wrong, but a different mind looking at things can help with another approach to this cancer.

    Best wishes for continued success with the treatment. Keep coming back here for support and to share your story.

    Linda

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