What chemo is your mum on?
God Bless you Wordman! It is amazing that God gives you His strength to still be able to continue being a pastor! I don't know if you knew of Pastor Chuck Smith but he had the same strength & gave his last sermon 3 days before he went to be with the Lord!
I also had the y 90. Same as Lauren with the pressure on the groin where they insert the instrument for the spheres. Other than that I only had some fatigue & a little nausea. Nothing serious.
Your story is much like mine Mary. I know how you feel & how hard it is to hear that nothing has been working! I feel good though. Have not had any CC symptoms so far except for a little pain where the tumor is & some tummy issues. But feeling better since I am on a chemo break. I am trying to get some referrals but only have an HMO & keep getting denied. I can only take one day at a time & make the best of each day. Also having faith in God who is the Great Physician!
Blessings to you!
Re: Our appointment with the surgical oncologist is coming up (13 replies, posted in General Discussion)
Dr. Imagawa was the surgeon I saw at UCI. I was not able to have surgery but he referred me to Dr. Kuo the radiologist who did my SBRT. My tumor did not shrink so Dr. Imagawa sent me back to my regular oncologist for chemo. I had 2 rounds of Gem/Cis but my platelets went way too low so then 2 rounds of Oxa/Zeloda. Unfortunately none of the chemo shrunk my tumor. I am now trying to get a referral to Dr. Selby at USC who has done surgeries that Dr. Imagawa would not do. I have been denied by my insurance to see him. It is very frustrating. Dr. Imagawa is very straightforward & lets you know exactly where you stand. Your questions are all good questions for him. Hopefully he will be able to perform surgery for you! Blessings to you.
Thanks KrisV. I am appealing the denial to see a surgeon at USC.
I have had a medicare HMO supplement & have had trouble getting referrals to see doctors who have treated cholangiocarcinoma's. My oncologist is not proactive about it & the surgeon I saw at UCI determined that surgery was not an option for me. I tried to get a second opinion at USC but was denied by my insurance. We do not have the means to pay out of pocket for the expensive consultations either. We are trying to decide if we can afford to pay a larger monthly amount to put my on a PPO medicare supplement with Athem Blue Cross. Do any of you have any advice about this?? We need to know before Dec. 1st.
I didn't lose any hair with Gem/Cis but I only had 3 rounds of it. Then with Oxa/Xeloda did not lose any hair either. Also only 2 rounds of it.
The coffee enema thing is from the Gershon (sp?) institute. You also have to drink 13 green drinks a day & to go to the clinic would cost $4000 a week!! There is a documentary you can watch online. It is interesting but I couldn't do the coffee thing or the 13 drinks!
I just realized I posted this in the wrong place. Should have been in the Alternative place!! Oh well!! When I asked the surgeon how I got this he said, "You must have pissed off a witch"!! Ouch!
Thanks for your input. I agree with you all!
Topic: Alternative advice (11 replies, posted in Surgery, Resection & Transplant Treatment Options)
I have had so many 'friends'!! tell me I should try this or that diet. Dr. Oz had someone on the other day said if you take 1 tsp. of wasabi a day it will cure cancer!! Been told by another friend to go to 'know the cause' online and watch. This guy claims all cancer is caused by fungus so go on the diet to eliminate all foods with fungus! Then cannibus is supposed to cure cancer. I get overwhelmed & don't know what to say to them. Does anyone here know anyone who has been cured by any alternative methods!! I am trying to eat as healthy as I can.
Re: I need advice on decision to do chemo. Pls. Help (26 replies, posted in General Discussion)
I am 67 & was diagnosed a year ago with the exact same Stage IV, inoperable intrahepatic bile duct cancer. I 1st went to see a surgeon who determined it was inoperable then he sent me to see the radiology oncologist at UCI. I had 2 SIRT treatments of radioembolization. They did not shrink my tumor. I then went on 2 rounds of Gem/Cis with no bad side effects except my blood count went way down & my tumor marker #s increased. Then went on Oxaliplatin/Xeloda with worse side effects. I had horrible sores on my legs. Then had an MRI showing my tumor had grown. So none of the treatments have worked for me. I am now on a chemo break. My oncologist said even if I had more chemo it would only give me 3 - 4 months than with no treatment. I feel great. No symptoms at all from the cancer. Just fatigue. My oncologist said why not take a few months off chemo & enjoy feeling good! I will see her every month to check blood & then another MRI to see how the tumor looks. It is a little scary not having any treatment. I am trying to see another surgeon for 2nd opinion.
This disease is crazy. Seems like everyone reacts differently to treatments. I believe with all my heart that God is the Great Physician and will lead me to the right decisions regarding further treatment options. I am not sorry I tried chemo & if it had worked I would probably still be on it.
God bless you!
Just got a call that I was denied the authorization to see Dr. Selby at USC. They are referring me to a Dr. Charles Chandler at UCLA. Has anyone seen him?
Good news! We got the authorization to see Dr. Selby at USC. I have to get all y records to them now. That should be a huge task.
We are waiting for authorization from my insurance for the USC referral.
Thanks everyone! For those who asked I 1st had 2 radioembolization treatments. No shrinkage from them. Then went to Gem/Cis which did not shrink it plus made my bloodcount go way down. Then tried Oxaliplatin/Xeloda. No shrinkage & horrible side effects with sores all over my legs. The next chemo would be Oxaliplatin/folfox. We will see how my blood is in a month before considering going back on another chemo. I feel very vulnerable of course being off chemo but am trying some alternatives in the meantime. Hopefully the referral to see the USC doctor will be authorized. The other dilemma we have is finances. We just simply don't have money for out of pocket expenses. It would cost us 4 - 6 thousand to have more testing done for trials. Woe is me!
My news is not good. My MRI showed new growth. Not huge but my CA-19 is still climbing. Obviously chemo is not working. My doctor said it is amazing that I still have no symptoms of my CC. I feel good off chemo. So we are staying off for a few months. I will see my oncologist every 4 weeks to check my bloodwork. We are focusing now on quality of life, not quantity. I am discouraged when I see how well some of you do on chemo & that it shrinks your tumors! I am happy for you but then I ask "why isn't it working for me"?
I am being referred to USC to get a 2nd opinion regarding surgery. We had gone to UCI and was told no surgery.
I am focusing on one day at a time & enjoying these days of feeling pretty normal.
Trusting God to be my Great Physician.
Surfer1, I was referred to see Dr. Imagawa at UCI but he said my cc is inoperable & I then saw Dr. Kuo the radiation oncologist & had 2 SIRT radiation treatments. I then had 2 rounds of Gem/Cis chemotherapy & then 2 rounds of Oxilaplatin/xeloda chemo rounds. Seems like I am on 2 of everything. Unfortunately none of then have shrunk my tumor. Now I will be having another MRI to see if the last chemo did anythings. I also saw Dr. Serry at UCI who tried to get me into a trial but I did not qualify for that. I have great respect for all the doctors I have seen at UCI but so far not much good news for me. I feel good right now. I have had no symptoms of cc so far! No jaundice, itching or grey bowels!
I hope you will be able to have surgery which is the best way to go.
My 'living' list is very short. Be with family & friends as much as possible. Enjoy the simple things in life. Share the love of God with everyone. I had lots of 'dreams' on a bucket list but financially they aren't possible. I also spend time looking at old pictures & reading old letters & writing poems. I cherish the memories!
Yippee!! That is great news! I want to go on that trial!
I was in the hospital with diverticulitis and they saw a 'shadow' on my liver when they did the CT scan. When I got out of hospital my gastroentologist sent me for another scan which showed the tumor. then had the biopsy which diagnosed me with CC. I am stage IV. Never have had any symptoms! No jaundice or gray bowels. I had a PET scan and their is not cancer anywhere else. I haven't had to have stents. I never wanted chemo but went ahead & did it because I seemed to have no other choice if I wanted my tumor to shrink. The gem/cis was not too bad. I was tired & nauseated but the anti nausea drugs helped that. But this last chemo combo Oxaliplatin/xeloda was awful. I don't want to go back on it. I am a strong believer in God & feel like He will give me peace about what to do next. Right now I am glad to be on a little chemo vacation!
I saw Noreen Fraser on the Huckabee show tonight talking about a CDK inhibitor that has shrunk her tumor. She said it has not had any side effects! It isn't chemo. Her story is pretty exciting. noreenfraserfoundation.org
Ladylinden, it seems like everyone on here reacts differently to treatments. My CC was found by accident a year ago. I have never had any symptoms from it. I felt fine until I started treatment. 1st I had radioembolization twice. Them did gem/cis for 2 rounds. These did not shrink the tumor so started oxaliplatin/xeloda for 2 rounds. I have been really sick on this. Now we are waiting for my next MRI to see if it had any affects on the tumor. I still have no symptoms from the cancer. My oncologist said she may put me on 'chemo vacation' and keep a close eye on the tumor. My oncologist said it isn't fast growing. I have to decide at some point what will be best for me.
Good news! My CT scan came back normal. No blood clotting or anything on my lungs. Still coughing though!! Might be acid reflux cough. I won't be back on chemo for a couple weeks. My oncologist wants to do an MRI to see if the oxaliplatin/xeloda has worked on the tumor. I am happy to get a chemo break. These 2 rounds have been pretty bad. I had terrible nausea & the rash all over my legs & arms plus the burning & throbbing on the bottoms of my feet. And fatigue that isn't relieved by taking a nap. So I will still keep swimming!