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Hi everyone, I am taking Robert up to Moffitt tomorrow and hope to get a second opinion with the radiation oncologist for a new radiation therapy invoving injecting 90-y glass beads into the tumor with radioablation. Has anyone had any experience with this?
Robert had the pet scan and some areas lit up that I have not heard are indicative of cholangiocarcinoma. Have you ever seen pelvic bone mass or small nodules in the lungs from this tumor.? He still feels great but the treatment may make him ill. Let me know…thanks, nancy
Thank you all for all your good thoughts and prayers. In this holiday season when this illness takes on a life of its own, your well wishes bring us hope. Robert had a cat scan the other day and it showed that his chemo treatment of gemzar and oxciliplatin had reduced the tumor by 33%. but some tiny specks have now appeared outside the lung. He is going for a pet scan on the 18th but it looks like more chemo is up the pike. I will let you know how it goes. Meanwhile, Happy Holidays to all!
Thanks for the reply. He seems to be getting better but it looks like its cellulitis and the doctor put him on antibiotics and no chemo this week and now we wait to see how he is doing. Let me know if anyone else has had this problem . thanks, Nancy
Hi everyone, as the the weeks unfold there never seems to be a dull moment. Robert had his third round of chem the other day and just as he was feeling a little better he tried to exersize with light weights. The next day he couldnt move his left hand and wrist and was in excruciating pain. Is there any correlation to tendinitus and chemo with oxciliplatin and gemzar? By the way, the hospital is trying to figure out a way to adjust our bill with the insurance company. I have also enlisted the help of the Patient resources foundation. They act as an advocate for patients. This is a really helpful foundation if you need help with insurance companies. Thanks, Nancy
Thanks for the input. I went to customer service at the hospital and then to pastoral services and between them they are dealing with the insurance company. I still have no idea who will ultimately figure it out but meanwhile we are getting outpatient treatment. Ill keep you posted….
Thanks Marion. This is such a difficult and tumultuos road. Today we were informed that our insurance will only pay a small portion of outpatient chemo therapy but will pay for in patient therapy and this is causing a big problem for the hospital. Have you ever heard of anything so crazy?
Hello again, Roberts doctor called today and suggested he do gemzar and oxciliplatin in consecutive sameday administrations. Do you think there is a risk in toxicity? Why do they normally do this in two consecutive days every two weeks? Any input is greatly appreciated.
Hi again, thanks for answering my post.Your foundation is the one bright spot in my cc psyche. Robert is 62 years old and in great health except for this 10 cm tumor on his liver. He will be having a follow up cat scan next week to see what has changed in the last month. Thank you all for your information.
Thanks for your info. We went to see the radiation oncologist yesterday who gave me the impression that radioemboilization is as effective as chemo embolization or less so. This was perplexing and I wanted to ask you all of your experience with radioembolization. I was under the impression that using all three modes of therapy were the most effective. Any thoughts?
Robert is just finishing the second cycle and so far he’s fine except I have a question. Before they administered the gemzar yesterday the blood test showed his platelets at 80,000 and the nurse said he was borderline for chemo. They went ahead and gave him gemzar and last night the platelets were at 137,000. How fast do they recoup.?
Someone once told me that having cancer is like living in a parallel universe. I never understood what my friend was eluding to until now. I just spent the last week brewing concoctions from a vietnamese friend which invoves 10 jujubes and ginsing root to a gallon of water for 16 hours. These roots and herbs are brewed on low heat in a porcelain lined pot with a wooden spoon to combat the side effects of chemo therapy. Surprisingly, it is giving my husband tremendous energy and focus. He is in the second round of gemzar and oxilliplatin and has only felt fatigue and a little stomach ache which was promptly cured by the tea he drinks twice a day. Apparently ginsing is a cure all for everything from cramps to cancer. Anyone else out there have tried it?
