why x-ray with MRI
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April 26, 2010 at 6:18 am #37115rowena32Member
Hi,
I got the results from my blood tests and the CT scan that I had this past week. I talked to my doctor from UCSF and since they were no worse than the last ones in March, she thought we should wait another two months and retest. So, no chemo starting in May for now. The radiologist at UCSF will read the CT scan and hopefully, will see no new growth. My blood test CA-19 did come down a little from 6400 to 4975 but the CEA went up .4 points to 5.7.
I have an appointment with Dr. Demanes at UCLA on the 4th of May to see what he has to say about brachytheraphy or any other options besides chemo. So, for now, it looks like the big “C” might be “sleeping” and the doctor does not want to disturb it.
I am still feeling fine, particularly in the mornings and by the evening. I might have a backache or feel something going on in the stomach or liver, which might be gas. I will discuss this with her at my next appointment.
Let’s keep praying and hoping for a cure.
Best wishes,
TheresaApril 23, 2010 at 5:15 pm #37114marionsModeratorThe Gem/Cis combination has been established as the “Standard of Treatment” for Cholangiocarcinoma. This of course does not mean that other agents may not also be as effective as individuals vary in their response rate. You might want to read up on past postings re: the Gem/Cis combo. The search function will provide you with many hits.
Best wishes,
MarionApril 23, 2010 at 4:56 pm #37113linda-zSpectatorTheresa,
I was on Gemzar / Cisplatin for 4 or 5 treatments (lost track) and am now on Oxaliplatin with Xeloda pills. I did very well on the Gemzar / Cis but I have heard others that did not. I was told Gemzar can do havoc on your white blood count more than the others and did experience a short time of that, but didn’t have much other side effects.
Now the Oxaliplatin has more severe side effects. In particular the cold-intolerance when drinking cold liquids and hands and feet are more sensitive to cold (making sharp needle-like pains in your throat, hands and feet when coming in contact with cold). Always wearing something on your feet to keep them warm, and gloves when getting something out of the freezer or sometimes the refrigerator, and not drinking cold liquids at all (only room temp or warmer).
I haven’t experienced any difficulties with the Xeloda pills, although the effects can be accumulative and I have only gone through 2 treatments. Dehydration (from diarrhea) and the hand and foot syndrome can occur where your hands and feet dry out and can blister, peel and turn extremely red/purple. I don’t know if it’s the Xeloda or Oxal. that also causes neuropathy (numbing and/or tingling) of the hands and feet. Since I am taking both at the same time, I’m not sure sometimes which does which.
What I do know is that everyone experiences the meds differently. I’ve seen some in the infusion center that seem to not be handling the meds well or talk about more nausea. I didn’t have that either, so it all depends on your body and what it can tolerate.
The reason for the different drugs are so that your body, or really the cancer, doesn’t get immune to the meds it’s being hit with. If one doesn’t work, they may switch it up to hit it with something different that may basically do the same thing….shrink tumors, destroy it’s cell makeup so it won’t multiply again, etc.
I thought my onc told me that Gemzar/Cisplatin was their first choice because they had the most success with that. Different medical people are also going to have different opinions. Ask all you can about why they want to do one or the other and whatever questions you may have.
Linda Z.
April 23, 2010 at 1:25 pm #37112kathybMemberHi Theresa,
Are you still having the “activity” around your liver? Hope you are feeling better.
A surgeon at Mayo told me there wasn’t a lot of difference between a CT scan and a MRI as far as he was concerned. Then he jokingly added that you can’t tell the MRI people that. The U of I Hospital and Clinics did the CT scans. I personally don’t know the difference.
I’ve sent you an email through this site.
Kathy
April 23, 2010 at 6:43 am #37111rowena32MemberKathyb,
I haven’t seen a post from you for a few days so hope that means you are feeling great.
I had my blood test last Thursday and a CT scan Tuesdays and all the results have been sent to the doctors. The doctor from UCSF is suppose to call me tomorrow and let me know what she thinks of the results and if we should start chemo now or wait awhile longer. I have an appointment with Dr. Demanes from UCLA to talk about branchytheraphy or any other treatment that might be useful for me. I asked about having a MRI this time instead of a CT scan, thinking that it might show up more (I don’t know the difference). But I had another CT scan for the doctor wanted to compare it to the one I had six weeks ago. The doctor had mentioned gemzar and cisplatin as the next choice but I am wondering if the oral chemo would have the same results and less side effects. Does anyone know how good the results have been and what kind of side effects it has?
Best wishes
TheresaApril 16, 2010 at 7:43 am #37110rowena32MemberThanks, Kathy, I sure hope it isn’t the cancer. But I guess I will know after the CT scan on Wednesday. I called, again, today about the appointments at UCLA and the one that does the scheduling said she was working on it and would call and let me know when it is set up. In the meantime, we will have positive thoughts!
Best wishes to you.
TheresaApril 15, 2010 at 1:35 pm #37109kathybMemberTheresa,
This waiting game for doctors, insurance companies, tests and then test results is hard. It can put your stomach in knots! If the doctors want to see you, I’d take that as a good sign.
Sorry you are not feeling so good. I know whenever I do not feel good the first thing I think is, “It’s the cancer.” I hate it when doctors do that, and they do; but I do it too :o( There’s a lot that can temporarily upset the system or make you sick. It doesn’t have to be the cancer.
Hope this is a good day.
Kathy
April 15, 2010 at 6:30 am #37108rowena32MemberHi, All,
I had my telephone appointment with Dr. Demanes from UCLA yesterday and it was not as productive as the first one. He wants me to come to see him and also another doctor at UCLA. They are suppose to make the appointments the same day since I will be traveling about five hours. I called today but my call was not returned so I will call again tomorrow to see when the appointments will be. Tomorrow, I will have another blood test and then a CT scan on Wednesday of next week. I have not felt as good this week for it seems there is some activity going on in my liver. I have not had this uncomfortable feeling before, so I am a little worried that the cancer is growing. I wonder if there is anything I can have beside more chemo. I was hoping that maybe brachytherapy would help me but am not sure if I will be able to have it. Or does this help?
TheresaApril 9, 2010 at 6:44 am #37107rowena32MemberHi, to all,
As you know I was expecting to find out today if brachytherapy was something that I might be able to do. The doctor was too busy to make our phone appointment this morning and they told me he would call later today or Monday as he would be out of the office Friday. I am not very good at waiting, so about 4:00, I called, again and who do they put me through to, but Dr. Demanes himself. He apologized about this morning and said he had my scans but had not gone over them, but would like to have another doctor there to see them, too. He will set up an appointment for Tuesday afternoon and said he had not forgotten me, but had been so busy. I told my chemo oncologist about having contact with Dr. Demanes and he was pleased that that might be an option for me. Gemzar and Cisplatin will be the combination I will be having when I have to start chemo, again. I would rather have Xeloda since I wouldn’t have to have a port, but I don’t know that much about it . My next appointment is May 3, after I have had another blood test and a CT scan and have heard from Dr. Demanes.
Marion, we all want to see that “Cure” for this cancer and glad that the Foundation has you and the others working for us.
Best wishes to all of you.
TheresaApril 9, 2010 at 1:15 am #37106marionsModeratorThank you, Kathy. Don’t be sorry for mentioning it. I have accepted it. What I have not accepted is for this cancer to be thought of as “rare” disease. This is what this Foundation is all about. We want to see some significant changes regarding treatment options for this cancer followed by a “Cure.” And, we will achieve it.
Best wishes coming your way,
MarionApril 9, 2010 at 1:06 am #37105kathybMemberI’m sorry, Marion. It’s sometimes hard for me to know who is the caregiver, who is the patient or who has been the caregiver.
Thank you for staying so active on this board and helping all of us in so many ways. God bless you.
Kathy
April 9, 2010 at 12:58 am #37104marionsModeratorkarthy….my husband’s diagnoses came at a very late stage. Unlike you, he did not respond to any treatment. His resection extended his life by several months.
You go, Kathy.
Best wishes,
MarionApril 8, 2010 at 10:03 pm #37103kathybMemberMarion,
Yes, my oncologist suggested Gem/C chombo in February. The plan now is to start after my May 12th appt. which will include an MRI – checking first with my GI doctor to find out if the stent can possibly last through treatment or if it should be changed before I start. They can change the stent during treatment if necessary, but would rather not.
Fortunately, I have not had any prior physical problems. Is your husband currently on Xeloda? I had 24/7 FU-5 and radiation last fall. No shrinkage, but stopped it from growing.
Kathy
April 8, 2010 at 9:40 pm #37102marionsModeratorkathy…..has the physician recommended the Gem/Cis combo? That of course will be the deciding factor. Due to underlying physical restrictions, some people are not able to tolerate this combo.
Good luck,
MarionApril 8, 2010 at 9:12 pm #37101kathybMemberTheresa,
Please let us know what the doctor said about brachytherapy. I think that is one of the options Mayo said I could not have because of my increased risk of infection. I will specifically ask next month at my appt.
I’ve never noticed a CEA test on my lab reports.
After reading the links Marion has posted about Gezmar and Cisplatin and learning more about it, I am now ready to have chemo a part of my life for several months.
Kathy
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