Hello Everyone, I am new here Update
Someone I know suggested CSN they heard it was a wonderful sight, I have read many of the post and found it to be an inspirational board and how everyone in here cares so much about one another, I really think that's great. Well thanks for listening, I am going to make this post short because it's late, I hope I will get to know all of you better.
Kristen
Comments
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Hi Sherriunknown said:This comment has been removed by the Moderator
Thank you for your response, before I begin, I was reading the post I want to say that I am sorry and that you have my sympathy on the passing of your dear husband.
Her cancer is adenocarinoma at the junction of the esophagus and stomach.
My sister was treated at UCLA, we were working In LA on a project for 2 months, after being dx she did not want to go home and leave the project, so she had that one treatment of Cisplatin. When we got home she went to MSKCC for a second opinion, although we don't think she will be able to have anymore treatments because of what happened with the Cisplatin.
What my sister and I think happened based on our science back round and the oncologist agrees, when Cisplatin enters the blood stream It has high concentration of chloride ion, then becomes neutral, but we believe it did not become neutral because there was no active up take by the cells, instead of the concentration lowering it stayed high, and become very toxic, it was like having over a double dose of Cisplatin and her heart stopped, the labs also came back as the Chemo targeted the glutathione and not the DNA, they did some lab work yesterday and studying the biopsy to see if her cancer cells are drug resistance cells.
So no more treatments just yet, we are working on boosting her immune system, by getting her glutathione levels back up, she feels good, works everyday, and in good spirit, but for now we just don't know about further treatments.
Thank you- Sherri
Kristen0 -
Hello Williamunknown said:This comment has been removed by the Moderator
Thank you for you warm welcome and all the information you provided, as I posted above to Sherri, Her dx was at UCLA, and 1 Cisplatin treatment, and second opinion at MSKCC, I don't know about further treatment thus far.
We were out to dinner one night after work and she started choking on her meal, at first she didn't think anything of it, the next day she was still having problems, I took her to the ER because we are not from LA and did not have a doctor there, they did a CT Scan, chest X-rays and referred us the the cancer center, the GI department did scope her and did a biopsy, the next day we had the results and she was sent 2 days later for a PET scan which determined the stage.
So that's where we are right now until we no more, and she will not have radiation.
Thanks again and I will post any up dates.
Kristin0 -
Clinical Trial for Stage IV patients at University of PittsburgTwins_4_Life said:Hello William
Thank you for you warm welcome and all the information you provided, as I posted above to Sherri, Her dx was at UCLA, and 1 Cisplatin treatment, and second opinion at MSKCC, I don't know about further treatment thus far.
We were out to dinner one night after work and she started choking on her meal, at first she didn't think anything of it, the next day she was still having problems, I took her to the ER because we are not from LA and did not have a doctor there, they did a CT Scan, chest X-rays and referred us the the cancer center, the GI department did scope her and did a biopsy, the next day we had the results and she was sent 2 days later for a PET scan which determined the stage.
So that's where we are right now until we no more, and she will not have radiation.
Thanks again and I will post any up dates.
Kristin
This is not medical advice. I am sharing information about a clinical trial which may be of interest to caregivers or EC patients. Any opinion is my own. I am not a medical professional and this is not an endorsement of any specific drug or procedure. This is not a recommendation. Use this information as you will.
****************************************************************
Kristin,
I wanted to welcome you to our family and also let you know about a clinical trial your sister may be interested in investigating which is being held at the University of Pittsburg Medical Center by Dr. Michael Gibson. From your description this may be something your sister is eligible for - Dr. Gibson and his research nurse Kelli are amazing people. My father was checking into this trial and Dr. Gibson told me he had success with this drug combo with several patients and then the drug manufacturer sponsored this trial.
Below is information about a clinical trial at the UPMC being run by Dr. Gibson for Stage Ivb EC patients with mets and/or recurrent EC who have only used one chemo agent since the recurrence or mets. It is a promising treatment. Ironically, this is the treatment that Dr. Ajani at MD Anderson prescribed for my father, but which was turned down by Medicare and Insurance because it was off label and not FDA approved so he would have to pay the cost himself (between 10,000 to 20,000 dollars a month). There are spots available but the trial is only being run at the UPMC.
If you have any questions please let me know.
The clinical trial information can be found at clinical trial at the UPMC http://www.upmccancercenters.com/trials/trialDisplay.cfm?id=4979&type=D. (paste into your browser)
Clinicaltrials.gov. - NCT00836277 http://clinicaltrials.gov/ct2/show/NCT00836277?term=Irinotecan+++Panitumumab+as+Second-Line+Therapy+for+Patients+with+Advanced+Esophageal+Adenocarcinoma&rank=1
Below is an excerpt for the Protocol Summary on the UPMC website:
Protocol Title:
Phase II Study of Irinotecan vs. Irinotecan + Panitumumab as Second-Line Therapy for Patients with Advanced Esophageal Adenocarcinoma
Principal Investigator: Michael Gibson
Study Design and Primary Aim:
Esophageal cancer is a highly lethal malignancy that is increasing in incidence, especially the histologic subtype of adenocarcinoma. Fully 50% of patients present with advanced, incurable disease. Of the remainder who are diagnosed at curable stages, at most 30% are long-term survivors. Advances in therapy for both local and advanced disease have been stagnant in the past few decades. As such, there is an urgent need for advances in therapy. The development of modern cytotoxic chemotherapy and in particular, biologically targeted agents, provides hope for improving the outcome in these patients.
The semi-synthetic derivative of camptothecan, irinotecan, is active in esophageal adenocarcinoma, both alone and in combination with cisplatin. Use as front-line therapy in both multi-modality regimens and combination chemotherapy is common. More recently, the elucidation of the role of the epidermal growth factor receptor (EGFR) pathway in esophageal cancer has resulted in the pre-clinical and clinical study of the activity of EGFR directed agents for treatment of esophageal cancer.
The anti-EGFR antibodies, panitumumab and cetuximab, are active as both single agents and in combination with cytotoxic chemotherapy in patients with colorectal adenocarcinoma. In particular, the combination of irinotecan and cetuximab is active for irinotecan refractory colorectal cancer, while panitumumab is active compared with best supportive care. In our clinic, we have empiric evidence for the unexpectedly significant activity of the combination of cetuximab and irinotecan as third-line treatment for advanced esophageal adenocarcinoma. Panitumumab has the clinical advantages, compared with cetuximab, of being fully human,, thus resulting in a lower frequency of infusion reactions.
This recent experience with these targeted agents in solid tumors, while still promising, has yielded relatively modest results.7-11 Notably, however, retrospective analyses of clinical trials are consistently revealing that differences in treatment effect between subgroups of patients can be associated with specific molecular profiles.12-18 These findings suggest the potential for a more rational approach to trial design that would use patient and tumor characteristics to select patients for therapy, thus enriching the population of responders.
Best,
Cindy0 -
This comment has been removed by the ModeratorTwins_4_Life said:Hi Sherri
Thank you for your response, before I begin, I was reading the post I want to say that I am sorry and that you have my sympathy on the passing of your dear husband.
Her cancer is adenocarinoma at the junction of the esophagus and stomach.
My sister was treated at UCLA, we were working In LA on a project for 2 months, after being dx she did not want to go home and leave the project, so she had that one treatment of Cisplatin. When we got home she went to MSKCC for a second opinion, although we don't think she will be able to have anymore treatments because of what happened with the Cisplatin.
What my sister and I think happened based on our science back round and the oncologist agrees, when Cisplatin enters the blood stream It has high concentration of chloride ion, then becomes neutral, but we believe it did not become neutral because there was no active up take by the cells, instead of the concentration lowering it stayed high, and become very toxic, it was like having over a double dose of Cisplatin and her heart stopped, the labs also came back as the Chemo targeted the glutathione and not the DNA, they did some lab work yesterday and studying the biopsy to see if her cancer cells are drug resistance cells.
So no more treatments just yet, we are working on boosting her immune system, by getting her glutathione levels back up, she feels good, works everyday, and in good spirit, but for now we just don't know about further treatments.
Thank you- Sherri
Kristen0 -
Hi Cindyunclaw2002 said:Clinical Trial for Stage IV patients at University of Pittsburg
This is not medical advice. I am sharing information about a clinical trial which may be of interest to caregivers or EC patients. Any opinion is my own. I am not a medical professional and this is not an endorsement of any specific drug or procedure. This is not a recommendation. Use this information as you will.
****************************************************************
Kristin,
I wanted to welcome you to our family and also let you know about a clinical trial your sister may be interested in investigating which is being held at the University of Pittsburg Medical Center by Dr. Michael Gibson. From your description this may be something your sister is eligible for - Dr. Gibson and his research nurse Kelli are amazing people. My father was checking into this trial and Dr. Gibson told me he had success with this drug combo with several patients and then the drug manufacturer sponsored this trial.
Below is information about a clinical trial at the UPMC being run by Dr. Gibson for Stage Ivb EC patients with mets and/or recurrent EC who have only used one chemo agent since the recurrence or mets. It is a promising treatment. Ironically, this is the treatment that Dr. Ajani at MD Anderson prescribed for my father, but which was turned down by Medicare and Insurance because it was off label and not FDA approved so he would have to pay the cost himself (between 10,000 to 20,000 dollars a month). There are spots available but the trial is only being run at the UPMC.
If you have any questions please let me know.
The clinical trial information can be found at clinical trial at the UPMC http://www.upmccancercenters.com/trials/trialDisplay.cfm?id=4979&type=D. (paste into your browser)
Clinicaltrials.gov. - NCT00836277 http://clinicaltrials.gov/ct2/show/NCT00836277?term=Irinotecan+++Panitumumab+as+Second-Line+Therapy+for+Patients+with+Advanced+Esophageal+Adenocarcinoma&rank=1
Below is an excerpt for the Protocol Summary on the UPMC website:
Protocol Title:
Phase II Study of Irinotecan vs. Irinotecan + Panitumumab as Second-Line Therapy for Patients with Advanced Esophageal Adenocarcinoma
Principal Investigator: Michael Gibson
Study Design and Primary Aim:
Esophageal cancer is a highly lethal malignancy that is increasing in incidence, especially the histologic subtype of adenocarcinoma. Fully 50% of patients present with advanced, incurable disease. Of the remainder who are diagnosed at curable stages, at most 30% are long-term survivors. Advances in therapy for both local and advanced disease have been stagnant in the past few decades. As such, there is an urgent need for advances in therapy. The development of modern cytotoxic chemotherapy and in particular, biologically targeted agents, provides hope for improving the outcome in these patients.
The semi-synthetic derivative of camptothecan, irinotecan, is active in esophageal adenocarcinoma, both alone and in combination with cisplatin. Use as front-line therapy in both multi-modality regimens and combination chemotherapy is common. More recently, the elucidation of the role of the epidermal growth factor receptor (EGFR) pathway in esophageal cancer has resulted in the pre-clinical and clinical study of the activity of EGFR directed agents for treatment of esophageal cancer.
The anti-EGFR antibodies, panitumumab and cetuximab, are active as both single agents and in combination with cytotoxic chemotherapy in patients with colorectal adenocarcinoma. In particular, the combination of irinotecan and cetuximab is active for irinotecan refractory colorectal cancer, while panitumumab is active compared with best supportive care. In our clinic, we have empiric evidence for the unexpectedly significant activity of the combination of cetuximab and irinotecan as third-line treatment for advanced esophageal adenocarcinoma. Panitumumab has the clinical advantages, compared with cetuximab, of being fully human,, thus resulting in a lower frequency of infusion reactions.
This recent experience with these targeted agents in solid tumors, while still promising, has yielded relatively modest results.7-11 Notably, however, retrospective analyses of clinical trials are consistently revealing that differences in treatment effect between subgroups of patients can be associated with specific molecular profiles.12-18 These findings suggest the potential for a more rational approach to trial design that would use patient and tumor characteristics to select patients for therapy, thus enriching the population of responders.
Best,
Cindy
Cindy thank you for the warm welcome and for the info on the clinical trial.
The situation changed a bit today, after going over all testing that was done and reviewing the biopsy, they actually think the cancer started in her lungs and spread to the esophagus, they said in rare cases what looks like mets can actually be the primary cancer sight, after they said that about the lungs, my sister asked to be tested for Hexavalent Chromium, they did labs and samples from the biopsy and it came back positive, which makes more sense, see my sister and I are environmental scientists and we work alot in chemical plants and to see if they are up to code, do alot of testing for sometimes for long periods of time, so when they said lungs we thought of the chromium plant we were there almost everyday for 3 months we take precausions but being around such toxic places, Here we try to do good to keep things safe for the public, but are putting Ourselves in danger, but it's part of the job and we love our jobs, So we are still unclear about any treatments the team
Is getting together tomorrow to discuss it, thanks for all the info we have to see what happens first, I will discuss the trial wiu her doctors
Thank You
Kristen0 -
Thank You for replyingunknown said:This comment has been removed by the Moderator
The Drs tested my sister for any heart conditions, and thankful she does not anything wrong with her heart, if you read my post to Cindy below things have changed a bit. They don't know about Chemo but had discussed today maybe internal radiation to try to shrink the tumor in the esophagus, we will find out tomorrow, I just want to thank you for being so kind and helpful,you guys are so nice and I am overwhelmed with the kindness here, I think it's wonderful, I will update when I have some info.
Thanks again Sherri
Kristen0 -
Update
The doctors are refusing to treat my sister,they said Chemo is to risky, and radiation alone will not be a big help, so he sent in a social worker and she said it's bad but there is nothing they can do, if you want any kind of treatment go see an alternative treatment doctor and left the room, I could not believe how rude, my sister was really upset and can't believe it.
So we will keep trying, the doctor said she would never make it through a whole round of Chemo it would probably kill her first rather than help her. He said without treatment she has 6-9 months. She can not except that who could at 29. Angry.... But are not giving up!
Kristen...0 -
PrayersTwins_4_Life said:Update
The doctors are refusing to treat my sister,they said Chemo is to risky, and radiation alone will not be a big help, so he sent in a social worker and she said it's bad but there is nothing they can do, if you want any kind of treatment go see an alternative treatment doctor and left the room, I could not believe how rude, my sister was really upset and can't believe it.
So we will keep trying, the doctor said she would never make it through a whole round of Chemo it would probably kill her first rather than help her. He said without treatment she has 6-9 months. She can not except that who could at 29. Angry.... But are not giving up!
Kristen...
Dear Kristen,
I am sorry for all that you and your sister are going through. I just want you to know I will keep in my prayers. Don't give up, keep on fighting for her life. I pray there is something someone can do.
Linda0 -
This comment has been removed by the ModeratorTwins_4_Life said:Update
The doctors are refusing to treat my sister,they said Chemo is to risky, and radiation alone will not be a big help, so he sent in a social worker and she said it's bad but there is nothing they can do, if you want any kind of treatment go see an alternative treatment doctor and left the room, I could not believe how rude, my sister was really upset and can't believe it.
So we will keep trying, the doctor said she would never make it through a whole round of Chemo it would probably kill her first rather than help her. He said without treatment she has 6-9 months. She can not except that who could at 29. Angry.... But are not giving up!
Kristen...0 -
hello to you.........
I was disappointed to read of your sisters diagnosis at such an early age but my heart is touched by the deep love you have for your twin sister. That love and concern will serve her well as you battle this disease together. You will both be in my prayers daily.
Gerry0 -
No treatments
My sister Kylie will not have anymore treatments, first of all no one will treat her she is a Risk factor, and after searching across the country for a doctor to treat her, she decided she was not going to waste anymore time, I was upset with her giving up on finding a Dr that would treat her and then she said Kristen if I only have 6-9 months, I am no going to waste anymore time searching for a doctor when they all say the same, she said even if I did get treatment it's not going to cure me anyway, she said I don't want to spend the rest of my time sick from treatments, she is doing some alternative treatments now, I found out some of you here don't believe in alternative treatments, and one person already called someone else a quack for doing so, but she has no other choice, and I don't like her decision but I have to respect it.
She is suppose to get married in August and is heartbroken because her wedding is already planned, she wants to cancel it now, I said Kylie just wait a little bit.
So that is where we are at, I would like to thank everyone for the help and support and prayers, we really appreciate it.
Kristen..0 -
A risk because of what happen with the cisplatin?Twins_4_Life said:No treatments
My sister Kylie will not have anymore treatments, first of all no one will treat her she is a Risk factor, and after searching across the country for a doctor to treat her, she decided she was not going to waste anymore time, I was upset with her giving up on finding a Dr that would treat her and then she said Kristen if I only have 6-9 months, I am no going to waste anymore time searching for a doctor when they all say the same, she said even if I did get treatment it's not going to cure me anyway, she said I don't want to spend the rest of my time sick from treatments, she is doing some alternative treatments now, I found out some of you here don't believe in alternative treatments, and one person already called someone else a quack for doing so, but she has no other choice, and I don't like her decision but I have to respect it.
She is suppose to get married in August and is heartbroken because her wedding is already planned, she wants to cancel it now, I said Kylie just wait a little bit.
So that is where we are at, I would like to thank everyone for the help and support and prayers, we really appreciate it.
Kristen..
I can remember my husbands first treatment...a clinical trial...using Erbitux...not long after they started that drip...he told me was cold...and then I saw him start to shake and ran for the nurses...who called the doctor across the hall....they stopped the drip immediately until the rigors stopped administered Benadryl...then restarted it at a much slower rate...they did this for all his 6 treatments...no problems after that.
He was tired but never sick during his initial rounds...his treatment was at the U. of chicago center for advanced medicine...
Perhaps her records could be faxed there or to Pittsburg and William's doctor who is tops...my husband wouldn't go there...he did exactly as he please period.
Maybe you can ask her if you could fax records to them...it couldn't hurt.
This cancer is so nasty...you need to do something immediately...and I know you wish to respect her wishes...but she needs a fighting chance.
jan0
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