Search Results for 'gemcitabine cisplatin'
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Search Results
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In reply to: Introductions
Zupton,
Welcome to our little corner of the world, sorry you have found yourself a tourist here. I am pulling for the Gemcitabine and Cisplatin combo to make some headway so the surgeon can work his/her magic. Please keep us posted.
Patty
p.s. To Kris, and I can’t stand people who kick puppies!
Topic: Introductions
I’ve just discovered this site, the discussion boards and the struggles and hope that are contained here. Here is my story as an introduction:
I am a 35 year-old man, and I was diagnosed with cholangiocarcinoma in early July, 2009. At that time, there was a 12cm, poorly-differentiated tumor in my liver and some involvement in the surrounding lymph nodes.
I am lucky to live in the Washington, D.C. area (at least with respect to this) and am being treated by the doctors at the National Institutes of Health’s National Cancer Institute. The surgeon there advocated for aggressive liver resection followed by chemotherapy. This was the opposite of what my other doctors had suggested. However, after much soul-searching, my family and I thought that the NIH route would be the best, so I signed up.
Unfortunately, I also have an intestinal disease called Crohn’s disease. I had two previous abdominal surgeries that left me with a lot of scarring on the inside. Also, there was some damage to my remaining, non-cancerous liver that was done by the Crohn’s drugs. Finally, when they got inside to do the surgery, it looked like there was some cancer in the distal bile duct near my pancreas. After all of that, the surgeons decided to sew me up without removing or resecting anything.
So, now I’m finishing up my first course of Gemcitabine and Cisplatin. I’m in the “one week off” part of the 21 day cycle. I seem to be tolerating that well, with only a bit of fatigue. The hope is that some combination of this treatment and chemoembolization will make surgery a better option. However, it looks like the surgery that could prolong my life is both a radical liver resection and a whipple procedure. To say the least, that is terrifying.
I look forward to continuing to read the information that is here. Thank you all for everything that is already done, and I look forward to contributing some tidbits of information so that others may be helped.
I’ve been reading through the discussion boards this past year and have found the posts to be very helpful. I feel it’s time to share my story, and hopefully begin discussions with others who are on this same journey.
I was diagnosed with cholangiocarcinoma in December, 2008. I had an 8.5 cm tumor removed through a liver resection, followed by five treatments of high-fraction radiation and three weeks of Xeloda due to a small positive margin on my portal vein.
In July 2009 a new tumor (approximately 2 cm) showed up on my CT scan. Due to the location from the original tumor, my cancer is now considered stage IV. There is also an area on the portal vein my doctors suspect is cancer, but it may also be due to effects of radiation. The only way to know for sure is if the area (on the portal vein) never responds to chemo, but the tumor does. If the cancer can be arrested for roughly six months, and the concern about the area on the portal vein is resolved, then my doctors will consider a second surgery to remove the 2 cm tumor.
In the meantime, I started a regimen of Cisplatin and Gemcitabine (two weeks on and one week off) and just completed my first three cycles. My white counts were too low when I went for my last treatment, so I will now switch to one week on, one week off.
I had a CT yesterday (September 14, 2009); it shows the tumor is unchanged and that there are no new tumors. I have a very fast growing cancer, so this is good news. Better news would have been that the tumor has shrunk, but this is the next best.
I am scheduled to start Tarceva this week and have mixed feelings. I am hopeful that it may be the thing that actually shrinks my tumor, but I am also concerned about the side effects. (I have read the Canadian article citing warnings.)
I would greatly appreciate your comments about what is working, or anything else you think may be helpful. And, I hope that I may have information that is beneficial to you. Thanks for reading my story. Peace and Blessings to you all.
In reply to: husband newly diagnsed – fluid retention
I am the daughter of fllover. My father is 73 years old. Very healthy and active prior to being diagnosed, his arms and legs were all muscle. His brother died of brain cancer and sister died of colon cancer.
A few years ago my father and mother moved near Coco Beach Fl. During the summer they come back to Syracuse NY. Upon returning home, this May, my father started feeling ill. In a weeks time my father went up to the VA in Syracuse several times. They finally admitted him for testing and observation. This is when we found out he had cc. When asked what stage the cancer was in we were told “advanced”. We were also told he had microscopic cancer cells throughout the liver. The VA doctor told us he does not agree with the aggressive approach for this stage of cancer. He believes in keeping the patient as comfortable as possible as this stage. He only wants to use gemcitabine. He also has a clot (?) in the bile duct going into the liver (don’t have my notes with me).
After our first appt, I did research and found this web site and the May 2009 posting from the Mayo Clinic about using gemticabine and cisplatin. I told my mother and four sisters my findings.
We had a second appt with the VA doctor’s assistant. We told her we wanted to do both drugs. She said to wait and see what the 2nd opinion doctor said, she called him “MR RIGHT” (Johnathan Wright). She was happy we picked him as our 2nd opinion and couldn’t say enough good things about him.
Johnathan Wright said because my dad is so healthy, other than the cancer, he would start with gemcitabine and one of the platinol drugs. He doesn’t use cisplatin.
My father loves the VA and because he has medicare Advantage in Florida, they went with the VA.
When my father went for his first chemo appt, my mother, father, and myself were all in agreement we wanted both drugs. The assistant doctor came in with a paper indicating that the use of both drugs was only a stage 2 trial and the doctor doesn’t like to use Stage 2 trials. If we wanted to do both drugs we would have to wait 4 hours to talk with them. My father started getting upset so we went with just the gemcitabine. He has no side effects other than being tired.
Last week my father went to his “new” regular doctor who told him he was retaining fluid in his stomach. Shortly after that he started complaining about his back and stomach hurting (he says his stomach is as hard as a rock). His stomach is very bloated looking, but I think it has been since they came back from Florida.
This week starts another round of chemo. My parents, again, want to do both drugs. I don’t think the doctors will do it.
Next month they plan on going back to Florida. My son and I are going to make sure they get down ok and stay for a couple of weeks. I want to meet with the VA doctors down there to make sure they are all on the same page for his treatment. I am concerned with leaving them alone. My mom says they have friends that will help. I have not met them yet. My parents don’t ask enough questions, they don’t question what the doctors tell them. They don’t remeber things. My mother doesn’t take notes, I gave her a pad of paper and pen. We won’t know what is going on.
I know everyone is different, but is it too late to try both drugs? What questions am I forgetting? not knowing to ask? What did I leave out?
In reply to: husband newly diagnsed – fluid retention
Hi,the drainage of the ascites fluid is a tricky one,as it would be a very low cost procedure that would certainly not be a factor.
The trouble is it always comes back ,sometimes within hours of having it taken off.Diuretics can be given to keep it away a bit longer.The other problem is complications caused by taking a large amount of fluid ,like low bp,dizziness etc and of course introducing infection.
So even though it can give relief even if shortlived doctors dont jump straight into it but weigh it all up.
Pleural fluid doesnt seem to come back as quickly as peritoneal .
With regards to the chemo,gemcitabine is better tolerated than the platinum drugs like cisplatin but more effective when given with them.It really depends on the overall condition of the person being treated.
Good luck JanetI’m looking for advice – I’m a 40 yr old woman with a 62 year old mother diagnosed with intrahepatic CC.
Quick history: My mother was diagnosed with a large liver mass on the left lobe on May 20, found during a CT scan at the ER where she’d gone for unrelated stomach flu. A biopsy the next day showed it was adenocarcinoma consistent with metastasized cancer, but every possible kind of primary site was ruled out – the poor thing had just about every test and scan you can think of, finding no other cancer sites from top to bottom. I know we were lucky that it was “incidentally” discovered.
She was determined to be a candidate for resection, which was July 2. They removed the entire tumor, the main one being 12cm x 9 cm x 6.5cm, with multiple small tumors ranging from 0.2 to 1.5cm. The margins were all negative and they didn’t see evidence of any right lobe involvement, and the lymph nodes removed showed no signs of malignancy. They staged her T3N0MX.
She tolerated the surgery really well considering (well, it really sucked for her, but apparently she did great and is recovering well). She met with her oncologist last week and they will schedule her for a port this week and begin chemo ASAP. She will receive Cisplatin and Gemcitabine on day 1 and day 8 and then day 15 would be a blood work day and no chemo. This would be repeated every 3 weeks for 4-6 cycles. She will be at the infusion center about 4-5 hours on chemo days.
Whew… OK, that wasn’t a quick history. But my question is – what’s the best way to offer my support? We are a close family, but the last 3 months have certainly brought us closer. I live 20 minutes away and work from home with two kids in school, and have a sister who lives 5 minutes away but works full time. I can be available to take her to the infusion treatments. Any of you receiving chemo, would you rather have a loved one there with you or not? How quickly will the chemo start making her feel crappy? What are some things you love that a family member does for you, or wish they would do for you? Did you like people to cook or shop for you? Should I get her a book on nutrition during chemo? Should I send her funny cards and drawings from the grandkids in the mail to help give her a smile?
This is all very hard for me metally/emotionally. I am a total Type A person, a doer, a problem solver, a push-my-emotions-inside kind of person, and I research stuff to death. The helpless feeling is difficult for me, the fact that I can’t cheer my Mom up or help her feel more at peace or more positive. I’m sure it’s normal for her to have good days and not-so-good days emotionally, but she’s quite down right now after meeting with the oncologist last week, moreso than she has been I’d say since before the surgery.
I think I’m kind of babbling at this point. If you have any pearls of wisdom or bits of advice I would really appreciate it.
Hi,
I recently was diagnosed with a Klatskin tumor on the bile duct. I had a surgery to attempt a resection but, the tumor was wrapped around the artery and vein and so they closed me up.
I have been told that next we will be going in the direction of Gemcitabine and Cisplatin and possibly radiation. I expect to get more specifics next Monday.
I have found the info on this site to be very helpful already. I suppose my big question from reading this site is whether I am going to need a caregiver near me all the time as I live alone at the moment.
Thanks,
Mark
In reply to: gemzar and cisplatin together
Gemzar (gemcitabine) + cisplatin: I was on this combination for several months last year and had a good response; shrinkage and stabilization of all lesions (7 of them!), enough to perform radiofrequency ablation. Read Marion’s post about this elsewhere on this site. They are discovering that gemzar + cisplatin works far more effectively in combination than either drug given alone. It is also becoming common to add a third drug to this combo, like Avastin (bevacizumab) or Tarceva (erlotinib).
Anyone out there who is on Gemzar alone, ask your onco about combining it with cisplatin!
Violarob in Texas
In reply to: Neulasta concerns Please Help!
Neulasta: I had my first injection of Neulasta last week, one day after chemo (Avastin + gemcitabine + cisplatin). My choice was either accept the Neulasta injection, or skip chemo for 2 weeks. I wanted to stay on schedule, so I took the Neulasta.
I had a low-grade fever and mild body aches for 2 days following the injection. Not bad at all, just took it easy for a couple of days. White count rebounded into the normal range and stayed there. (My platelets were not as cooperative…)
I would say to anyone who could benefit from it, to give it a try at least once to see how you tolerate it. I think that if it allows you to stay on your chemo regimen and keep fighting, it is worth it as long as the side-effects are tolerable.
Violarob in Texas
I have personal experience with this, too. I had gemcitabine + cisplatin last year, with very good result. A few months after my RF ablation procedure, they put me on gemcitabine alone as “maintenance” therapy to try to keep from having a relapse. Well, the gemcitabine alone did not do the trick; the cancer came back.
You are right; gem + cisplatin seems to be emerging as the standard of care, (with some oncologists adding Tarceva, or Avastin or Xeloda, depending on the individual patient situation.)
Love your posts!
Violarob in Texas
Thanks for posting this, Marion. The study was authored by Dr. Kaseb, one of the GI oncologists at MD Anderson. They are discovering that gemcitabine + cisplatin is much more effective than gemcitabine alone.
Violarob in Texas
In reply to: Violarob in Texas: one-year update
Newest update:
Not the greatest news. I had CT scans done in May, 2009. Scans showed 2-3 new lesions, but rather small, about 1.5 cm each. TUMOR MARKERS: AFP went from 0 up to 111; CA19-9 went from 26 up to 65. My onco at MD Anderson, Dr. Javle, said not to panic. Easy for him to say! I was really getting comfortable in my remission, and it was a shock to get back into “fighting mode”. Last month I started a new chemo regimen of gemcitabine + cisplatin + Avastin (bevacizumab) IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day.
When I went through chemo last year, I was very lucky; no side effects at all. This time around is a bit rougher. A little fatigue and low-grade fever the week of infusion, but not too bad. It is getting better as time goes on. Fourth of July weekend I went swimming and kayaking, with normal energy and appetite. Yay!
Dr. Javle thinks he can get control of the lesions since he caught them very early and very small. There are still no metastases outside the liver. We won’t know for sure until August, when I have my next scans done. He is concerned that maybe I am getting too much chemo and suggested cutting one or even two of the drugs. I told him “no way!”, that I want to continue hitting the cancer as hard as possible while I am strong. We will discuss it again next week
If we can get control of the lesions (i.e. no growth over a 3-month period) then he is talking about some kind of targeted therapy: Chemoembolization, or radiospheres, or maybe RF ablation again. He is making no promises or definite plans for targeted therapy. He says first things first, get control of the lesions.
Well, that’s about it for my long-winded update. Not good news, but not terrible either. I am feeling good, doing all my normal activities. Lesions are small, and no mets outside the liver. I am now 19 months after my initial diagnosis. Everyone keep your fingers crossed for me!
Violarob in Texas
In reply to: MD Anderson Cancer Center patients?
Hello all: I have been absent for quite a while from the group. I will post my news in another section of the discussion board. (Unfortunately, my cancer has returned after a five-month remission.)
To Hector (“Hecace”): You are in great hands with Dr. Curley. Since your post was dated in May of 2009, I am assuming you have already had a consultation with Dr. Javle. He is a brilliant guy, and has all the up-to-date information regarding treatment options. He is an honest guy, and is willing to share as much information as you care to handle. If you have specific questions, please e-mail me privately and I will answer as best I can.
To “JamieD”: My chemo regimen last year was gemcitabine + cisplatin IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day. I was on this regimen for 5 months, then had radiofrequency ablation. I was off therapy for 5 months. Recent scan showed growth of new tumors, about 1.5 cm each, very small. (The old tumors, treated with RF ablation are still “dead”). My new regimen is gemcitabine + cisplatin + Avastin IV infusion every 3 weeks, with Tarceva 150 mg pill every day. However, Dr. Javle is worried this might be too much, and may delete one of the drugs. I will discuss this next Monday with him. Every patient has a different regimen because of their unique circumstances, so I would caution you not to regard someone else’s regimen as the “magic bullet”. It is good to compare, but not necessarily good to copy! If you have other specific questions, please e-mail me privately and I will answer as best I can.
Violarob in Texas
Topic: From one trial to the next…
An update about my experiences at the Cancer Institute of New Jersey. After my last CT scan and ultrasounds, I was taken off the clinical trial I was on. That consisted of gemcitabine (gemzar) and a drug being developed by a Spanish pharmaceutical company called plitidepsin (or apeldine). The bad news is I have grown a new tumor in my liver – a small one, 1-2cm, near the dome, which luckily is not very dangerous health-wise. For this reason, it is considered that the cancer has “outsmarted” the gemcitabine drug.
The good news, however, is that activity in my lymph system has decreased significantly. Hopefully that will continue to happen and we can get the tumors under control as well as I start up on a new trial.
This new trial is for a drug developed by Abbott Labs in Illinois, named ABT-263 – which I assume is just the research name and if it ever gets to market will be called something different. That drug will be offered with “carbo-taxol” (carboplatin/paclitaxel). I have never heard of paclitaxel. Carboplatin is in the same family of drugs as cisplatin and oxaliplatin (platinum-based drugs).
I’m excited to try out a new treatment. I will be the first patient for this trial at CINJ (others will participate at another institution). But I’m also anxious/fearful of new side effects. I handled the previous drugs very well and now I’m a bit spoiled about feeling “pretty good” on most days. But I do this not only for myself, but for every person who has come before me, and those who will come after – – advancing medical science’s knowledge of how these things work. They may not save me, but they may help someone else.
FYI – These are both phase 1 trials so it will be quite a few years before the drugs are available to the general public. But if anyone in NJ wants info on CINJ re: these trials, you can call them at 732-235-6777. Dr. Vassiliki Karantza-Wadsworth is overseeing the trial.
