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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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Posts found: 1 to 25 of 61
I used eucerin, udder cream.
I have been on celexa (like lexapro) for about 5 years. It has been great. Take Xanax if I need to' but very rare.
Pam and Lauren,
My prayers are with you.
Dr. Lenz needed to change my chemo as the last, fulfox stopped being effective.
He changed to folfiri/Avastin and the Avastin was denied. He then put me on folfiri /tarceva. The tarceva and irinotecan were both denied after one treatment of folfiri/irinotecan. I'm so upset. I talked to dr. Lenz and Taline/PA and insurance wants cases that show proof of the effectiveness of these drugs. this is not easy to find, as these are off label for cc.
Taline called me yesterday and said they will cover Folfori/irinotecan if I pay $100 before each infusion. She said not to let them bill me, as going through billing and insurance will cost more than the $100. Absolutely ridiculous.
I am going to fight BC/BS until I get it. I'm trying to gather facts from other cases. If any of this applies to you please post and let me know.
I was put on fulfori/ tarceva last Thursday. The tarceva was denied, now after one treatment they have denied folfiri also. I have blue cross/blue shield and they want proof that this treatment helps in cc. They want documentation.
How could they deny this drug? What are my next steps?
Please I need help!there has to be some way to get this. There are many people on this site that receive it.
My neighbors,friends,and church people are using the site mealtrain.com for our family for two years. My cousin set up the calendar on this website with everyone's email. They can pick an open date and sign up. They bring a meal each Thursday night at 6:00. We put ideas of what foods we like and can eat in this site. When a month runs out, she adds a couple more. This has been so nice. Even if I'm not up to eating my family is hungry. If people don't want to cook they get take out for us, but not fast food. They may get California Pzza Kitchen, etc... There is also a place for me to address them on this site. Most of the time it's too much food and we eat some for leftovers.
Thanks for your update. Looking forward to hearing everything you learned.
God bless you.
My thoughts and prayers are with you. What a wonderful relationship you two sisters have had. Hang on to those wonderful memories.
Dear Percy and any others with input on this chemo combo,
I was hoping to get some feedback from you. I had scan on Tuesday and saw dr. Lenz today and received not very good news. Two of the tumors in liver have grown slightly by about 4 mm. There is also one new lesion. In peritenium a couple of tumors have grown by mm.
I knew things were changing, as I have had more pain. Dr. Lenz is trying to get me in clinical trial with folfiri and verlaparib. If I do not get in trial we will start on folfiri and tarceva next Thursday. If I get in trial I will start on June 11th.
I am disappointed that things are changing, but Dr. Lenz said " they haven't exploded, they have just changed some." I know that God is with me each day and I still feel its my time to fight. He is by my side and he is the only one that knows when I will leave this earth.
I just wanted some feedback from you about these treatments.
I was denied Avastin, then USC appealed for me and it was denied again. We tried to look at getting the manufacturer to pay for the medicine. You need to make less than 100,000 in your household. We did not qualify. The hospital has nothing else they can do and said I should try to appeal on my own.
I do have a copy of the denial letter. Now what? I feel that if the hospital or Dr.
Lenz couldn't get it approved, what chance do I have? I guess I should just call and talk with them first about my case. Any ideas?
Marion, he suggested I talk to Taline, his PA about what the rejection letter said. I don't think Dr. Lenz has the time to handle these. I will talk with Taline on Monday, just wasn't sure if there's a specific way to appeal it.
Yes, I do have pain, but am on a 25 Fentanyl patch and take 1-2 dilaudids each day for breakthrough pain. My main problem is trying to gain weight. I have started megase and hopefully that will help.
Since diagnosis I was on Gemzar, xeloda, and nexavar for 17 months until it stated progressing. Dr. Lenz then moved me to fulfox in October. At the last appointment everything was stable, but he wanted to get Avastin approved to add it now or later. The insurance declined Avastin right away.. Now what? I want to appeal to my insurance company. I have seen some older posts about getting Avastin approved, but nothing recently. I want to get on this appeal quickly.
I see my onc and PA every two weeks. I am examined by both of them.
I was on xeloda for 19 months. Three pills in morning and three at night. The only trouble I had was feet peeling and numbness, but nothing I couldn't handle.
It got to be a little too much after a year, so he cut me down to 4 days instead of 7. I never got the mouth sores or any other side effects. I was on this with Gemzar for 19 months, then had to switch to 5fu/oxilaplatin which I'm on now.
Best wishes to you on this new treatment. My prayers are with you.
Dear capo dad,
What exact supplements is your ex wife taking? I am also in orange county, but go to USC for treatment. I have never been able to have surgery and will be coming up on my two year diagnosis. I have been on chemo these last two years. Can you tell me exactly what she's using. My problem is that I've lost so much weight these past months. I am on a patch for pain.
Thank you to all of you. I will start thr patch tonight. I do get many anti nausea medications with chemo, but this the worst I've been. I get decadron, kytril, aloxi, emmend, and Ativan. I also have others for the days after. This was my fourth cycle of the new chemo, 5fu/oxiliplatin. I had a scan on Tuesday and liver and lung rumors are stable. Slight growth in peritenium , and dr. Lenz feels this is causing the pain. My markers ans cea all look good. We will comNtine on with this chemo. A little better today, but still very nauseous. This is difficult as I'm continuing to drop weight and have to put some back on. Thank you for your support and prayers.
I wanted to fiNd out if anyone is on fentanyl patch. I am going to start. On
One due to ongoing pain. I will use dilaudid as a breakthrough. Does anyone have info on it's use.
Nausea all day today and vomiting from chemo yesterday. Should I start patch tonight?
I'm having a very hard day today. Since my diagnosis in May 2010, I have been up and down with depression. Today is a particular bad day. I keep going back over the 8 years before diagnosis and all of the signs something was wrong and not one doctor did anything to help. I had stomach problems and bowel issues, but Dr. Thought it was just stress and not a big deal. I always knew something wasn't right. Every couple of years I would go in and be checked, but nothing ever found. He never did Ct or any other deeper testing. Just did blood work and that was always o.k. Until my May diagnosis when they did ultrasound at my urging and saw something on my liver and then took a month to diagnosis CC..
I have such blame today of myself and my Dr. For not finding it years ago. So sad. Don't want to leave my husband and two children.
Sorry just needed to vent,
I have been on chemo for 20 months and have only missed 1 because of low counts. There is no end to my chemo treatments. I hate when people ask, I just say there is no end I have to do this forever. I have been stable for 20 months, but the Gemzar /xeloda just stopped working and I had a little growth.
He has put me on oxiliplatin with 5fu and had my second treatment yesterday. Hoping and praying this treatment works as well as the last. I can't have surgery as it has spread to liver, lymph nodes, lungs, and peritoneal area. It was in all of these place at my original diagnosis.
I was on xeloda and Gemzar for 20 months and it just stopped working. At the beginning I had the red and sore feet with peeling. My doctor kept the dose, but only had me take it 5 days instead of 7. That really helped me. This was my only problem with xeloda.
I started the fulfox two weeks ago with my second treatment being today. No nausea because of all my pain meds. A week after treatment got diarrhea and stopped vomiting also. It didn't happen again after this one time.
I am experiencing quite a bit of pain in abdominal area. Trying to keep it under control wil vocodin/500 with dilaudid 2mg. I have one more treatment and then a ct to see if the new treatment is working.
The following week we will be taking a week long trip to kauai. It will be my husband, daughter(16), best friend and caretaker helper and mom. We are going to relax and have fun. Hopefully my pain has lessened by then. Our son can't go, as he is in college back east and no break for him.
Dr. And everyone hopeful new treatment will cause stability. Gemzar and xeloda gave me 20 months.
Thanks for the support,
Is 5fu/oxiliplatin treatment difficult? I may be switching to that and Dr. Lenz said it will be about the same as the one I'm on now which is xeloda/Gemzar/and nexavar. I looked up old post, but did not see many.
Percy- Thank you for your thoughts. I am a Christian. There is no way that I could have gotten through the last 20 months without God in my life. Everyone i know I ask them to pray for me. I believe this is why my treatment has been so successful. The Lord has been with me.
I am taking the Vicodin 500, about 3-4 in 24 hours. I also have pain each morning in the middle area right below the breast bone. I will email Dr. Lenz tomorrow and continue to pray about what to do. He has me off the nexavar and xeloda. He is waiting for insurance approval for the 5fu/oxiliplatin. The pain is definitely getting worse and is not all relieved by the Vicodin. They gave me a prescription for dilaudid and fentanyl patch, but I haven't tried either. I'm very nervous to try them.
Thank you for your support,
Percy- The scan before this stated:
Stable lobulated primary mass between the left and right portal veins measuring approximately 3 cm. multiple stable hepatic low density mestatic lesions.
Stable lymphadenopathy as well as omental and peritoneal carcinomatosis.
Remainder of exam is unchanged compared to 9/20/2011.
I realize you are not a doctor, but you understand more about all of this than I do. I never had fatigue and no pain from the nexavar. I had abdominal and back pain when first diagnosed. Now the pain is on my left side under the last rib and throughout my back. I take about 1500-2000 mg of Vicodin a day.
Dr. Lens explained that any little bit of growth in the peritoneal area can cause lots of pain.
So confused and wondering if I should stay on the same drugs or time to switch.
Don't want to use up my options if not necessary.
Percy- Dr. Lenz was going to continue the treatment until I talked with him about the pain. He said with this cancer he has to rely on ct's, bloodwork and the way I'm feeling to make his decision. He took into account how my pain has increased quite a bit over the last two months. This was the report from my last ct: multiple low density liver lesions, which are stable to slightly increased in size. Stable to mildly increased omental modularity, concerning for carcinomatosis. Mild interval increase in mess enteric soft tissue attenuation, which may be related to edema.
Would love your input on these findings. Would it still be more beneficial to continue same treatment.? Is 5fu and oxiliplatin not effective?
Posts found: 1 to 25 of 61
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