Search Results for 'gemcitabine cisplatin'

My sister, who turned 56 last Saturday was diagnosed with cc on Aug 1. She passed out at home and called 911. She has been through so much already.She has only been at home for 3-4 days at a time since the diagnosis.She has an intrapatic tumor and, an extraptic tumor. The intrapatic tumor has artery and vessel involvement so is not a candidate for surgery at this time. The plan is for chemo with gemcitabine and cisplatin 2 x month for 2 months , then scan, if tumor shrinks,then surgery, if not, oral chemo and radation. The problem is that she can’t get her numbers right for chemo. She has two billary drains, one on her side, the other upper abdomen. She has experienced every symptom, every complication I have read about and today chemo cancelled for the 5th time due to high bilirubin #s . I don’t know how to help her at this point. She is divorced, kids out on their on . One lives very far away, the other goes to school and works. She has no health insurance but I am amazed at how our hospital has provided. Medicaid has not been approved yet, but we are hopeful. I am sure ya’ll are curious about her Doc’s. As a woman of faith I know that God went before us in all of this because going through the ER my sister could have gotten any oncologist but she got the Doc that had just come from working with Dr. Melanie Thomas ( from MD anderson) at the MUSC( med univ of sc) After the diagnosis Dr. Wells got my sister in at MUSC with Dr. David Cole ( surgeon) and of course Dr. Thomas.

Hi, my name is Tina. I was diagnosed on September 7th. I work at Johns Hopkins and left work early on September 5th to see my PCP due to increasingly darker urine over 5 days and pale/white stools for two days.

Intermittently over the last several months, I had pain in the upper right abdomen just under my rib cage. I had an ultrasound in January, a colonoscopy and endoscopy to followup on colon polyps in February, but no sign of this terrible disease. I kept thinking it was my gall bladder. I was diagnosed with Chron’s Disease as a teenager which I have been told is one of only four potential precursors for this disease.

Late in the afternoon on September 5th, the PCP did a urine stick test and said I was mostly likely having some kind of liver problem and I should go to the ER. I returned Hopkins to the ER and after a 16 hour experience which included ultrasound and CT with contrast, I was admitted. I had an ERCP on the 7th, but the internal medicine team at Hopkins told me the news just before going down for the ERCP. The doc said it’s one of two kinds of cancer and neither are good. CC was the eventual diagnosis confirmed by cytology brushings and FNA of regional lymph nodes. I believe I am staged at 3C as I have regional lymph node involvement as well as the tumor is encasing a vein. I also have a portal vein thrombosis. PET found no other obvious tumor sites.

I start chemo tomorrow at Johns Hopkins using the usual Gemcitabine and Cisplatin. The plan is to do three rounds and then rescan to see if there has been an effect on the tumor. I’m considered inoperable due to the location of the tumor (“very far down the tract”) and the vein/artery involvement.

I have a very loving and supportive husband and family who are currently holding me together. My husband and I have three children ages 18, 12 and 10. I am 46 years old. I have spent the last three and half weeks being completely overwhelmed by the news. It’s been hard to be positive.

Thanks for listening,

Tina

Hi all.
My name is Art and I have been diagnosed last month with late stage CC. Unfortunately the primary which blocked only partially the lower Biliary branch left no noticeable symptoms until a secondary grew big enough to cause a problem for my GI Doc in a routine colonoscopy. He got suspicious and called for a CT scan which lead to the diagnosis. Unfortunately the doctors claim that there may not be symptoms until late stages occur. More on this in another topic later.

A little about myself. I’m a 64 year old Physicist living in the LA area of southern California. I am fortunate to have a great wife and two wonderful sons a daugther in law and two grand chiildren. My sister and nieces and a bevy of friends provide a constant stream of concern and help.

I have been to City of Hope, UC Irvine Chao Cancer Center and I am being treated at a local Oncology group with connections to UCLA. I have just had my second chemo which is the only course of treatment open to me. The components are Gemcitabine (Gemzar) and Cisplatin.

In the mean time tissue samples have been sent to the UCI/Harvard/MassGen study to search for structural abnormalities in the tumor genetics. A chinese study originally estimated that 8.5% of the CC sufferers have the gene type abnormality of the study. Subsequent American studies now ongoing seem to show a lower occurance rate of ~2%. The good news is anyone with this gene marker may be completely controllable with an oral administered drug. It takes 1 month for analysis of samples, 1 month to clear out toxins from chemo and then treatment can begin. The tissue type they are inspecting is an adenocarcinoma which is another selection element. The basis of the study is that this type of cancer is genetically identical to certain lung cancers that have been treated successfully with the drug of this study.

Since chances are slim for anyone to be an element of this group recognized therapies are started at once.

More on other topics where appropriate.
But again a hello to all.

Art

Hello… My name is Claudia and my 76 year old father was diagnosed with cc on January 25, 2012. He was referred to MD Anderson after his liver enzymes were elevated from a cholesterol test and a tumor and lesions were found on the liver with an ultrasound. Upon diagnosis he was informed that he was not a surgical candidate due to the large tumor sitting on the portal vein so we started chemo treatment of gemcitabine and cisplatin. We did 8 rounds and the scans revealed that the large tumor and lesions on the liver were shrinking but the nodules on the lungs were growing. We continued another 8 rounds but this round was a bit more difficult because his platelets were always low. I also have to share that he did so well with no side effects (other than the platelets) of the chemo. The latest set of scans showed that the tumor maintained in size but the lesions were growing and also new ones were forming on both sides of the liver and the lungs. Our doctor decided to change chemo because she felt that the cancer was growing resistant.

Up until this point, my dad has NO symptoms of the cancer. No fatigue, no jaundice, no pain whatsoever! He has maintained his weight and a well appetite. It’s hard to believe that this is growing inside of him and he has no symptoms. In fact, to this day, my mother believes that the doctors must be wrong because he is fine. I have hope but also have to be realistic with all the lab reports of this horrible cancer.

The dr recommended changing the chemo to (I hope I get the correct names) leucovorin and oxaliplatin. Well, due to my dad having only medicare, he is responsible for his 20% up front (which I have been paying up until this point and don’t mind at all because I would do anything for my hero). With the new regiment, his portion would cost us 1200 every two weeks in addition to the pump. His chemo doctor recommended that we try xeloda hoping that the cost would be better. It wasn’t. Xeloda would have been 600 every three weeks. I have been referred to numerous agencies that can maybe assist with his co-pays. I have yet to find any agency because I always get this answer, “I’m sorry… We don’t have any funding for that particular cancer.” And the CancerCare Copayment Assistance Foundation told me “We’ve never heard of that type of cancer….” I have grown so frustrated!

This afternoon I talked to the doctor again as to what our options would be and what would be the best path to take. He recommended going with the original chemo of leucovorin and oxaliplatin and have it done at the county hospital to make payments.

This is where we are now. I’ve been on this site since January reading up on cc. My dad is the best man you will ever meet. I am glad that I am here and have seen so much support for everyone here.

I guess my two main questions are…
Is it rare that dad be considered stage 4 and has been diagnosed for over 6 months with absolutely NO symptoms whatsoever?
Does anyone know of any agencies that are willing to help with copayments of patients with Medicare only?

xoxoxo
Claudia

My name is Jyoti and I try to keep researching on behalf of my brother who was diagnosed with stage 4 CC in Feb-2012.

We, who have our old parents back home in India always are worried to receive that dreaded call. And that call did come for me on Mar 1, 2012 very early in the morning. But it was not my parents, it was my elder brother, my only sibling.

He called from the hospital saying he needed my help in being seen by some one specializing in CC. A day before he himself had found out that he had stage 4 CC and since then he and all of us were on internet trying to figure out what he was dealing with. First, I was in denial, how can it be stage 4 with him not knowing.

He is a Management Consultant who was traveling at that time and was at a client site, when the client pointed out that he looked pale and yellow. He got home, went to hospital and this is what he found out. There must be some mistake in interpretation. Right? Nope.

Since then I have been on this site and other similar sites trying to understand more. I am so Thankful to the community and got so much hope and information after reading the posts (Thanks kris00j and others).

Me and my husband fly back and forth to NY many times to be there for important appointments, and I have had a trip to India for few weeks to support our parents. My sister-in-law who is the primary care giver is overwhelmed, managing his appointments, diet, kid’s studies and activities (kids are in India) and expenses (self-paid medical bills).

I am trying to help by reading up as much as I can and helping my brother and sister-in-law. I wish I lived closer and be with them more often.

Anyways coming back to my brother’s case, he managed to see Dr. Fong who he firmly believes can help him within 2 weeks of finding out in mid-march. Dr. Fong referred him to Dr. Kemney for chemo to shrink the tumor such that it becomes resectable.

Within his first week, due to the alarmingly high levels of Bilirubin, a stent was placed to stop the leakage of bile and from then on his chemo started. He was put on the combination of Gemcitabine and Oxaliplatin and many rounds later, the results gave the first jolt to my very hopeful brother and sister-in-law. The combination was not effective in shrinking the lymph nodes or the tumor.

Then another combination was tried for few weeks: Gemcitabine and capecitabine(Xeloda). Same results.
By that time, my brother started feeling worse in terms of pain in the abdomen, his ability to eat and swelling.

Dr. Fong determined he had to intervene and instead performed “Nano-Knife”, removed few lymph nodes from abdomen area and installed an HAI pump in mid-June. Meanwhile, wary of chemo results, we also went for chemo-sensitivity assay testing on the sample.
The testing identified that tumor is resistant to Cisplatin, Gemcitabine and 5FU alone as well as in combination.

The drug identified to work was Gefitinib/combination with Gemcitabine.

The installed pump has had leakage issues as of now (July 2012), and there have been 2 attempts to fix that with very little success.

My brother is now on the Gemcitabine and Erbitux. Erbitux was identified by Dr. K in a separate testing.

We now have to decide whether to proceed with the chemo via the pump despite the leakage or just continue with Erbitux.

And at this time we are not informed enough to make the call.

Kris has been kind enough to give some pointers on the forum for HAI pump to ask where the leakage is going. I will also ask on the drug that is being planned via the pump.

I would update that post on what was decided on pump.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5975

Meanwhile I would love to hear from members any experience on chemo-sensitivity testing- specifically were the drugs still given despite the test showing resistance to them?