One patient with glioblastoma still alive nine years later
by Meleroni on Wed Apr 04, 2007 12:00 AM
My mom is 58 and was dx. March 1, 2007 with Stage IV Pancreatic Cancer (located in the tail) and mets to the liver. We seem to be in a very rare group as we have not found others that suffer w/pancreatic cancer of the tail...anybody or other caregivers willing to share their stories w/us, please do so. We'd love to share our story. She is currently on chemo (Gemzar) for 9 weeks. She hasn't been rescanned yet to see if the tumor is responding to the tx. But, since the tail is involved her blood sugars are going wacky....and she has an increased appetite that she must feed every 2 hours. I know that's unusal for this cancer. Anyway... love to hear from others.
by Grandmascaregiver on Wed Apr 04, 2007 12:00 AM
My heart goes out to you and your Mom. My mom is also figthing this disease, she had 3/4 of her pancreas removed in July of 2004. She also did Gemzar for 14 months. The gemzar was keeping the cancer at bay, but in June of 2006, the chemo was killing my mom rather than the cancer. She also tried tarceva, but could not tolerate the rashes. My mom is 80 years old. Your mom is alot younger and probably stands a good chance with all the new drugs they have now, like Gemzar and Tarceva. My advise to you is read all you can, the more info the better. I would check out Johns Hopkins website theres is a message board like this that is very helpful, atleast I think so.
I wish you all the luck in the world. Be strong for your mom and pray for a cure to this terrible disease.
Keep in touch and may god bless your day today!
by Stefanie on Wed Apr 04, 2007 12:00 AM
by Stan42 on Wed Apr 04, 2007 12:00 AM
I have the same condition. Tumor in the tail with mets to the liver. I was in a trial @ Sylvester in Miami. They have a trial with Gemzar, Erbitux and Oxaliplatin. Had a reaction in the lungs called Ground Glass. Had to stop that treatment.
I am now looking to do something else. Considering Xeloda and Taxotere.
Original treatment started 4 months ago and shrunk the tumors.
by Cabaret on Thu Apr 05, 2007 12:00 AM
My Dad had his tumour in the tail but his was operable (just) and they removed it in a Distal Pancreatectomy and Splenectomy in March 2005. This made him diabetic. He is currently battling a recurrence to his Liver as well. You are right that it is a lot more common in the head of the pancreas.
Good luck with your chemo search Stan - deciding what to pursue is sometimes very difficult! My best wishes to you.
by Maria_Ildonete on Fri Apr 06, 2007 12:00 AM
I am battling a rare cancer that started on the tail of the pancreas.My main problems were:Weigh lost, diabetes,and rash on the lower part of the legs. I had the spleen and 40% of the pancreas removed in April 1999. I was told I was cured, and needed no follow up. In 2003 the diabets came back(very mild) and my weigh satarted comming down again. Doctor said not wrong, just the pancreas wasn't producing enough insuline. I bought it for couple of years, but my weight kept comming down.
I had so many Cat Scans, MRI, Ultrasons, even one Pet Scan. Biopses always said "no cancer". It was only December 2005, I was diagnosted with a very rare type of cancer called GLUCAGONOMA. My weigh was down to 94 lb. The only thing the Doctors said I can have is one shot every 28 days of Sandostatin LAR. No Chemotherapy. I have gained 9 lbs.I have tried UCLA, USC, OSU, PSU and now I am trying MDAnderson Hospital, but still working with USC.
I am looking for a surgery. My liver is 50% cover with spots, the cancer is back on the pancreas, and have 2 lymph notes with tumor.
I have all the energy I need to keep working full time, taking care of my house, and do different types of volunteer work. I have read that once a year, one person, in 20 million is disgnosted with this.
I believe that God chose me to carry this cross. I am carring it without one pain.
If there is anyone who would like to say anything about this cancer, I would like to hear.
God bless you!
by Lynn91153 on Sun Apr 22, 2007 12:00 AM
by Looloo1 on Sat Apr 28, 2007 12:00 AM
thanks, I dont think the plan is to do anything to my liver at present, he will see me again in four months to see if there are any changes there. The main concern now is my two other spots - armpit and chest. I wondered what your consultant has said regarding your husbands further spots have they indicated what treatment they might use? Sorry if these questions are too intrusive please dont feel you have to answer. I'm finding it so hard to find anyone that is in the same situation as me so I can bounce ideas off my consultant.
by Suzic on Tue May 01, 2007 12:00 AM
On 4/4/2007 Meleroni wrote:Hi...My mom is 58 and was dx. March 1, 2007 with Stage IV Pancreatic Cancer (located in the tail) and mets to the liver. We seem to be in a very rare group as we have not found others that suffer w/pancreatic cancer of the tail...anybody or other caregivers willing to share their stories w/us, please do so. We'd love to share our story. She is currently on chemo (Gemzar) for 9 weeks. She hasn't been rescanned yet to see if the tumor is responding to the tx. But, since the tail is involved her blood sugars are going wacky....and she has an increased appetite that she must feed every 2 hours. I know that's unusal for this cancer. Anyway... love to hear from others.Melanie
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