Thanks Holly! I am going to pursue 2nd opinion. My PCP is helping me with that. he is just my family doctor but so supportive. The doctors at UCI seem to have been in disagreement about when to do my post SIRT radiation scans. The radiology oncologist said to wait 6 - 8 weeks & then when I saw the surgeon he wanted to do it sooner. So I had the MRI 5 weeks after the radiation. I am a little concerned about this tumor board meeting that they will not be together on what to do next. Thus my need to get 2nd opinion. I have only had the radiation treatments. No chemo yet.
You all are so knowledgeable! I am learning alot being on this discussion board. It is helping me so much.
Pattimelt!
1 Fri, 10 May 2013 22:37:09
Re: Internal radiation therapy (22 replies, posted in General Discussion)
2 Fri, 10 May 2013 12:08:03
Re: Internal radiation therapy (22 replies, posted in General Discussion)
Thank you lisacraine! Very encouraging to hear good results. I have been feeling really good this week. My anxiety causes some physical stuff but no nausea & the bad taste I was getting is gone. When I feel this good it is hard to believe I am in Stage 3 CC!
3 Thu, 09 May 2013 09:38:33
Re: Internal radiation therapy (22 replies, posted in General Discussion)
Does anyone know or has anyone been able to be present when the 'tumor board' meets to discuss your case? My doctor is going to the tumor board on Monday & then we will see him afterwards.
4 Thu, 09 May 2013 09:28:48
Re: Starting SBRT Thursday, 5/2 (76 replies, posted in General Discussion)
I recently had 2 SIRT treatments that sound similar to SBRT. It has been 6 weeks since last treatment & I am finallly feeling good. I was so tired & nausea. Now I have to wait to see what will be next. Sometimes I wonder if my doctors know what they are doing! Thinking of you & hope your side effects diminish.
5 Tue, 07 May 2013 08:51:48
Re: Internal radiation therapy (22 replies, posted in General Discussion)
Thanks Lainy. The MRI results were not conclusive. It did not show that my tumor had changed but the doctor said the radiation may have caused some swelling before it 'shrinks'. This is a strange disease. We saw a guy at lunch yesterday with a t-shirt that said, "F--- CANCER"! I never use that word but I wanted to wear that t-shirt yesterday!
6 Mon, 06 May 2013 22:20:36
Re: Internal radiation therapy (22 replies, posted in General Discussion)
I am very frustrated. The results of my MRI were not great but doctor said he needed my bloodwork redone to see what the CA 19 will tell & then present my info to the tumor board to decide if I should have a 3rd sirtex radiation or move on the Chemo. I am feeing really down tonight.
7 Tue, 30 Apr 2013 21:20:33
Re: need help --advice please!!! (21 replies, posted in General Discussion)
My heart goes out to you. I have been going to a cancer support group & the pastor who leads it always says, "We are all terminal". Only God knows the number of our days. The only way I am getting through my CC is by the peace God gives & all the prayers of friends & family. God walks with us through all our trials & tribulations. The joy of the Lord is my strength! God bless you !
8 Fri, 26 Apr 2013 18:35:21
Re: My dad - CC survivor of 5+ years and counting (30 replies, posted in General Discussion)
It was so good to have your personal thoughts! I must have the very same thought patterns as you do! I also have good days & bad days. On the good days I do everything I can do & even on the bad days try as much as I can. My husband & family & dear friends are all so supportive & optimistic! I am thankful for them & as one of my dear friends keeps saying, "just Keep Swimmin"!! Also I know God is the Great Physician & He knows the # of my days better than any of the doctors!
9 Wed, 24 Apr 2013 09:09:31
Re: Internal radiation therapy (22 replies, posted in General Discussion)
I have had some friends suggest that I use doTERRA essential Frankincense oil. Has anyone tried this 'alternative' medicine? One of them was determined I do it & gave me a bottle. I said I couldn't afford it (it is $90) so she gave it to me. My massage therapist also suggested I rub it on the area of my tumor! I am such a sceptic & my doctor doesn't see any benefit of it.
10 Tue, 23 Apr 2013 22:03:36
Re: Internal radiation therapy (22 replies, posted in General Discussion)
Next Tuesday, April 30th. Then May 6th with my doctor to get results. Lots of waiting because of all the authorizations I have to get.
11 Tue, 23 Apr 2013 18:10:47
Re: Internal radiation therapy (22 replies, posted in General Discussion)
Thanks for the info! I have been feeling really good the past 2 days. Waiting until I have my MRI before I will know what is next for treatment. So I will enjoy the feeling good days.
12 Mon, 22 Apr 2013 13:41:07
Re: Internal radiation therapy (22 replies, posted in General Discussion)
I did ask about pain & taste in my mouth. He said the pain might be a good thing as the radiation may cause the tumor to swell before it shrinks! I haven't had pain there for the past few days. He said the taste in my mouth is from the tumor. My appt. was at 3:00pm & we didn't see him until 4:30 so didn't have time to go further with the questions. I was somewhat frustrated. I need to be sure we have more time when we see him after my MRI results come in.
13 Mon, 22 Apr 2013 11:01:53
Topic: Internal radiation therapy (22 replies, posted in General Discussion)
Since I last wrote I have had 2 Sirtex internal radiation therapies. I had reaction to the contrast but that was treated during procedure & 2nd treatment took med prior to prevent reaction. I had the last treatment 4 weeks ago. I have been having nausea & some pain in area of liver. I also am having bad taste in my mouth. I will have an MRI next week to determine how effective the radiation was & what will be done next. Our HMO medicare supplement has been good for us so far but is frustrating to have to wait for all the authorizations. So far everything has been authorized for me to have my treatments etc. at UCIrvine Chao Comprehensive Cancer Center. I take one day at a time & have the best supportive friends & prayed for daily. God is the Great Physician & He knows best. I have peace that I am doing what I need to do.
14 Wed, 06 Feb 2013 11:53:24
Re: HI (16 replies, posted in Introductions!)
I have had a couple of nights where I wake up with what is like a bad hot flash but I get kind of sweaty too. It lasts for a few minutes & then I am totally exhausted & weak after. Can't figure out if it is anxiety or symptoms! Still waiting to set up appt. for my pre 'mapping' for the radiation treatment. Waiting is not fun!
15 Mon, 04 Feb 2013 19:50:33
Re: HI (16 replies, posted in Introductions!)
I went to a cancer support group this morning with my hubby. We were very blessed by being there. It is so good to talk to others who have cancer too. They were very caring & prayed for us as we will for them. God is the ultimate healer & He knows the number of my days. I will trust Him for being with me on this path.
I will be talking to the person to schedule my 'mapping' appt. tomorrow. Hopefully it will happen as scheduled!
Thanks for your support too!
16 Sun, 03 Feb 2013 20:29:23
Re: HI (16 replies, posted in Introductions!)
I had my CT scan on Friday so should hear tomorrow as to what is next. I am having so much anxiety over this. I am a strong Christian & believe totally in God but at this point I don't feel much peace. I have had divirticulitis & trying to avoid getting another attack during my upcoming treatments. I want to live each day to the fullest but it is hard to do anything but worry! This is an awful cancer. I am actually surprised to see how many people have it. I thought it was only 2 out of 100,000 people who get it. I am rambling but just needed to talk to some people who have been there or are going through it too.
17 Thu, 31 Jan 2013 13:53:23
Re: HI (16 replies, posted in Introductions!)
The surgeon I saw at UCI is very familiar with CC. Dr. David Imagawa. He is the chief, division of hepatobiliary surgery at UCI. The Chao Family Comprehensive Cancer Center.
Thanks again for your input. I agree with 2nd opinions but they take time too. I am trying to get this whole process moving as quickly as I can.
18 Wed, 30 Jan 2013 22:57:37
Re: HI (16 replies, posted in Introductions!)
I am 66. I will check it out.
19 Wed, 30 Jan 2013 22:00:15
Re: HI (16 replies, posted in Introductions!)
After my biopsy I went to an oncologist in my healthcare network. She had me have a PET scan. It came back with good results as far as the CC had not spread to any nodes or anywhere else. It is inside my liver. I have no symptoms yet. No jaundice or grey stools. I feel fine (except for trouble with diverticulitis attacks).
She said it is very hard to treat CC so advised that I go to UCI medical center where there are specialists in this type of cancer. So then I had to start the process of getting all the authorizations being out of my healthcare network. We only have an medicare supplemental HMO. On Dec. 26 I saw a surgeon who said because of the size & location of my CC surgery would not be an option at this time. I then had to wait for authorization to get the 'sirtex' radiation treatment. It was authorized & I saw a radiology oncologist & a radiologist Monday. I had more bloodwork & now need an updated CT scan before proceeding with the treatment. 1st have to have the angiogram that will map the path for the radiation. Right now I am waiting again for results of bloodworm. Everyday seems to be too long for me. I am glad to find this support!!
20 Wed, 30 Jan 2013 15:10:15
Topic: HI (16 replies, posted in Introductions!)
I am a little overwhelmed at this point. They diagnosed my cholangiocarcinoma in October & I am still not having any treatment. There are so many doctors to see & tests to take & all the authorizations for treatment. During all this all I can think about is that my tumor will grow!
