My dad was diagnosed with Stage IV colon cancer about a year ago. We were told his best bet was to get into a clinical trial. He has been taking a regimine of a trial drug called Panitumumab since April and his two masses (one near his stomach and one near a lung) have reduced in size 50% and his CEA level has dropped from over 240 to 4.5. So the drug seems to be working. Right now his biggest problem is weightloss and neuropothy. Does anyone have any good tips for these issues? The other thing is we really haven't been told how many treatments he will take. We know it is a trial, but it would be nice to have a light at the end of the tunnel no matter how dim it may be. He has had 12 treatments with chemo, avastin, oxyplaten and the panitumumab.
You may want to ask the doctor if they can give him decadron as a premed to his treatment...it helps to increase the appetite and worked for my dad. Also, the Boost shakes are full of nutrients and seem to help the weight loss.
I'll keep you all in my prayers. Hang in there...a positive attitude sometimes means everything.
My husband has been in the Panitumumab study since Dec. 2005. His CEA started at 2562 and after 7 treatments of 5FU, Oxaliplatin, Leucovorin, Avastin, and Panitumumab, his CEA is now down to 127. Over 90% of the cancer is gone. Is your DAD still in the study? We are not sure how many treatments will be given. He is starting to have neuropathy in his toes and hands - we will be asking for a break from Pani... to let the scabs on his face heal - a nasty side effect of the Pani. Did your dad have this side effect also?
My Dad started in the trial in April of 2005. The trail was a study to determine the correct dosage for the drug. There objective was for him to take treatments every two weeks as long as he could tolerate the drugs. In Feb. of this year dad got real sedintary and developed blood clots in his legs, we didn't realize this until he passed two blood clots through his heart. Luckily there was no damage, but due to some complications at the hospital they had to remove his port that was being used to administer the trail. Once they removed his port they took dad out of the trial. So he took the drugs for almost a year. His CEA level dropped from over 300 to 4 by the end of the trial. Since he has been out of the trial the neuropathy in his hands is almost gone and his feet and toes are slowly coming back. L-Glutamine power taken with juice help my dad with his neuropathy. The biggest thing we had to overcome with my dad was a loss of appetite. After he lost 35 pounds They gave him megace to stimulate his appetite. Dad goes back in June for a scan to determine what the mass has done without the treatments. Keep me posted on your results or if you have any additional questions I might be able to help with.
I'm so glad to chat with someone who is familiar with the Panitumumab clinical trial. Your Dad was in the trial from April 2005 to Feb 2006 - did he take full dose FOLFOX plus Avastin plus Panitumumab this entire time? Did he experience a painful rash on his face that scabbed over? My husband also developed a clot in his leg (a side effect of GI tumors and the treatment to combat GI tumors)- it was discovered during a routine CT scan at the end of 6 rounds of treatment. A piece of the clot had even broken off and gone to his lungs - very dangerous - he was put in the hospital the next morning and a screen was placed in his inferior vena cavae to prevent future clots from traveling to his lungs. As a result of the clot business, he was put on Coumadin to thin his blood- this has made the scabbing with Pani an issue plus the nose bleeds from Avastin an issue. He hasn't requested a reduction in FOLFOX since the start but will be this week. Just wondering if your DAD was able to stand full dose FOLFOX, Avastin, and full dose Panitumumab from April 2005 to Feb. 2006. Thanks. PS - how old is your DAd? My husband is 48 now.
My dad is 63. Since the part of the trial that my dad was in was a dosage study, they varied the amounts of the drugs he was taking during the study. Sometimes he would get a 75% dosage of everything, sometimes they would drop the Avastin or the Panitumumab. He did experience the rash on his face (mostly his nose) and also had mouth sores. It sounds like your experience with blood clots is almost identical to my dads. We had the clot pass thru to the lung and also had a screen installed. Right now my dad is taking Coumadin for clotting. If you would like I can give you my mom's email address. She can elaborate more on the different changes made during my dads treatments. We know what it is like to be part of a trial that very few people know the outcome. Where are you taking the trial? My dad was taking his in Huntsville, AL.
My husband is in a clinical trial being funded by Amgen. It is called the PACE study and they are trying to determine if Panitumumab should be used in the first line of attack of advanced colon cancer along with 5FU, Oxaliplatin, Leucovorin, and Avastin. The trial site we are involved in is in Scarborough, Maine. There will eventually be 1000 people in the study nationwide, randomized for 500 to receive Pani, 500 as control. My husband is the only individual in Scarborough thus far to receive Pani(several other individuals entered into the study were randomized not to receive the clinical trial drug) so the rash he received on his face was a bit of a shock to everyone involved. He has also had several rounds that resulted in awful mouth sores. I believe this is more of a side effect of the 5FU vs. Pani or Oxaliplatin or Avastin. I would love your mom's e-mail address - the Panitumumab has resulted in such pain on my husband's face it's tough to decide whether to stay in the study at times. The results have been incredible (now at 95% reduction of CEA after 7 rounds, 2562 to 127) that part of you wants to stay with Panitumumab and part of you wants relief from the pain it causes. The coumadin the past 3 rounds has definitely accentuated the bleeding and scabbing. I'm not sure if I previously mentioned this - his colon cancer had metastisized (sorry on the spelling) to his liver, multiple lesions in both lobes, too many for surgery or RFA. Weight loss has not been an issue, they add premeds(Eloxi and decadron) on the first day of infusion then he is on decadron for the next 2 1/2 days, pill form. He lost weight originally from his colon surgery but is now only down 10 pounds. Has he been out of all forms of chemo since Feb. ? Thanks.
My mom's email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Her name is Jean and my dad's is Tony. Yes he has not had any chemo since Feb. It sounds like your husband is taking the same treatment my dad was except he did not get Pani or decadron, that I recall. My dad discovered that he had colon cancer during a routine physical he was getting prior to retirement in 2004. They did a bowel resection in January 04 and thought they had gotten all the cancer. In January 05 during a follow-up they discovered that my dad's CEA level was rising. It was discovered then that his cancer had come back in his lymph nodes behind his lung and stomach. Doctors at UAB Hospital suggested that the clinical trial with Panitumumab would be his best hope. So we enter into the trial as soon as possible. It was also sponsored by Amgen. Other than the side effects we have been very pleased with the trial. I will call my mom and let her know you will be emailing. She will be a great source of support. She had dial-up so she doesn't check her email about once a dad. She and my dad are also serving as primary care givers to my grandmother(87) who is being treated for pancreatic cancer. When it rains it pours. I can also be reached by email at greg.--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----
Hi Well today was round 10 for my husband's treatment. To comment on your last message - Pani is what I sometimes call Panitumumab when I am too lazy to write the whole word out. Decadron is an anti-nausea drug that is given to my husband along with Aloxi BEFORE the Oxilaplatin and Leucovorin. He then takes a pill form of Decadron for 2 1/2 days after chemo - he has not had any nausea, vomiting and his weight during chemo has remained stable. He has even gained back weight that he lost after the colon surgery. Today, the doctor decided that he needed a round off from Panitumumab. Because he was already at 50% dose, the research nurse said that due to study guidelines of the clinical trial he is in, he would no longer be able to receive Panitumumab as a clinical trial drug. The study he is in states that if 100% dose is too toxic every week, a pt. can go off for 1 round, come back at 50% for 2 rounds, then if all is going well should go up to 75%. Well, the rash at 50% caused so much pain that my husband never went to 75% and now because he needs a round off, they may stop giving him the trial drug altogether. Seeems a bit crazy because it is good information to know that maybe Panitumumab at 100% dose should not be given as a first line of attack with Avastin and FOLFOX. Oh well, seems to be out of our hands now. Due to the neuropathy, his doctor also reduced his oxiplatin a bit. Following your advice, he is going to start taking the glutamine powder to help fight neuropathy - his doctor gave it the ok today. Thanks for your input, sorry I will not be able to e-mail you or your mom due to cancer compass guidelines.
I hate to hear that he is out of the study. Don't give up. It is my understanding that the drug should reach FDA approval soon. I'm going to give my mom the link to this message thread. Hopefully she will be able to figure it all out. Hang in there!!