Cholangiocarcinoma
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Hi Jane,
research Essiac tea and Goji Juice. It’s helping my motherinlaw. Pain is reduced and her quality of life is better. I am a firm believer in complimentary medicine. I figure if traditional medicine writes you off, what have you got to lose?
maureen
I am only on Gemzar. I have had 11 doses. I do 2 weeks of chemo with one week off. They reduced the original dose and went to the 2 weeks on because of the blood counts being so low on the 3rd week. I am waiting to hear about my CA 19-9 when I go to the doctor tomorrow. I also had a bone scan last week.
I have had 7 cycles (14 treatments) of Gemzar and Zeloda and feel and look great. No hair thinning and people are surprised when they hear I have stage IV. The drugs they give with the chemo are amazing so you don’t feel ill. I get hyper from the Decadron steroid they give along with the infusion. My tumor has greatly reduced in size. I am am glad to hear you started chemo, Jane.
Dear michmcd, thank you for your info. I can’t believe your CA 19-9 results. Are you on any drug along with Gemzar ? I have had one session of 3 treatments with 1 week off and on 5/6 will start the 2nd round. I have also had no side affects, but maybe I will after the 2nd round ? I have not had any blood work yet to see if there has been any improvement. I will have that next week, I think. How many treatments have you had ? Thank you again for hope. Jane
I was diagnosed on 12/8/08 and surgery wasn’t an option. I just had my 10th chemo with gemzar (gemcidibene). The biggest side effects are fatigue and low blood counts. I had a little bit of nausea but it has been controlled with zofran or compazine. I haven’t had any thinning of my hair. A pet scan in December showed a spot in my liver and fluid in my lungs and pelvis that the doctors said were metastisis. On the pet scan in March, the fluid in my lungs and pelvis were gone along with the spot in my liver. My CA19-9 was 7998 in January and went down to 526 in March. So the chemotherapy has been working for me.
Hi Jane, I have done all the chemo-gemcidabean, 5FU(pump) and now Xeloda. I also had radiation. I have been sicker with the flu, to see me I look normal not bald or pale. my side effects from a ll of this was fatigue. It took a while to come on and a while to go away. I see you are from Chicago, so I would contact Dr. William Chapman (google him, quite impressive) he is located at Barnes Jewish Hospital in St. Louis MO. He is one of the leaders in this cancer. He is a transplant specialist ( I am on transplant list) with out him I would have no hope. Don’t let chemo scare you it is not what the movies potrait, they have great drugs to manage all the side effects. It is a small price to pay to see tomorrow. Good luck Cathy -spraywedo@aol.com
I’ve had very good luck on chemo. I was diagnosed around the same time as you were and was not a surgical candidate (mets to the diaphragm and omentum ruled it out) so chemo or nothing were my main options. I was on cisplatin and gemzar from November through April mostly 2 weeks on 1 week off on the cycles one treatment each of the on weeks. This brought my marker levels from the 100k’s to zero and I only had tiredness and low blood counts and some nausea for side-effects for the most part until close to the time we discontinued this treatment. At that time I started getting ascities and some intermittent fevers possibly from reservoirs of infection in the necrotic liver left when the tumor was killed. This treatment also reduced the tumor size to less than half the original and the mets could not longer be seen on the scans. When I had a case of Acute Spontaneous Peritonitis which put me in the hospital for a week and made my kidneys not function well for the first few days of the hospitalization.
My doctor decided that the IV chemo was hurting more than helping at that point so changed over to Xeloda which is less harsh than the IV chemo I was on and my blood numbers and fatigue improved and the tumor continued to shrink so that it was no longer visible on my scan about 2 months ago. So I went completely off chemo for two months and had a followup scan and its returned but is still small and my tumor marker is only in the low 100s so I’m restarting the Xeloda this week.
So chemo seems to be a hit and miss proposition. I know some people don’t get any effect at all but I and my doctor were surprised how well it worked on my tumors.
The chemo may give you little side effects or major and my be quite effective or completely ineffective. It seems the only way to know is to try and see what happens and stop it if it seems to be doing more harm than good.
The nausea from the chemo for me was well controlled with anti-nausea drugs (Zofran/Ondansetron with Lorazapam/Ativan) and if my blood numbers dropped too low I got transfusions and delayed the chemo treatment. The only lasting effect I had was some tingling and numb feeling in my toes that began near the time when we discontinued the IV Chemotherapy and still hasn’t come back.
Hi, Jane:
I have also sent you a private response.
I know the boat you are in. I too was scared to death to try chemo the first time. I refused to eat the day of my first treatment because of my fears of nausea, vomiting, etc. Well, I sailed through that treatment and all other treatments with no problems at all. As a matter of fact, I go to the gym and work out on my chemo days AFTER treatment! Decadron and Zofran (which they give you alonside the chemo drugs) do wonders for fighting side effects. No one has any idea that I am on chemo unless I tell them. I do not look sick or tired, and I do all my normal activities.
Chemo is a reasonable option, because that is the main tool for stopping any NEW tumor formation. Theraspheres and chemoembolization can only treat the existing tumors and sometimes are not any more effective than IV chemo. There are lots of success stories in this discussion group regarding Gemzar, cisplatin, Tarceva and Avastin. Your doc sounds like he/she has a good plan; stabilize disease with chemo, then attack the new tumors with Theraspheres, and then follow-up with “clean-up” chemo after the Theraspheres. That is “state-of-the-art” treatment for the time being.
Good luck, and let us all know how you are doing!
Violarob in Texas
Hi Jane, I just wanted to add something based on my experience with my husband.
Don’t allow too much time to go by without insisting on new scans to see if chemo is working. If too much time is spent on one type chemo and then find it’s not working for you…then those other options may not be available to you.
My husband’s oncologist kept saying he wanted to see systemic results before trying cyberknife, but in fact…he really wouldn’t have known because he never track the progress properly. His numbers where, but the doctor said the chemo wasn’t working…he was an ass and I feel he is the reason my husband is not here today.
Keep track of your tumor markers yourself…get the numbers from back when first diagnosed and see where you are. YOU BE IN CHARGE, and don’t let them give up on you.
By the time we moved to another doctor, the damage was done.Good Luck, stay strong and fight like hell.
Lulu
Thank you all for your responses. I am so happy to hear that you all have had various treatments and done well. My doctors do want me to have either embolization or Therasphere, but (I guess) want the chemo first to kill any cells that might be floating around, if it’s possible to kill them? My bilirubin level is 0.4, so the spheres should be an option to me at some point. These 2 tumors recurred right at the edge of the resection area, so apparently they didn’t quite remove enough, but perhaps they simply couldn’t remove any more of the liver. This I don’t know.
Hi Jane,
my wife has had 6 rounds of gemzar and she did quite well, only complaining of fatigue and a little hair thinning. This treatment works for some and for others it does not.everyone is differant. While it kept the tumor in check it did not shrink it. But keeping it in check I think is a win situation. She had the sir-spheres treatment in Feb. and we are still waiting for results, because it takes 8-12 weeksbefore they can take a scan. Everything I read and hear says that this is an effective treatment… we have our fingers crossed and faith in the LORD. Its a step by step procedure, everything has to be just so before you can be consider a candidate for it, and i hope that you can have it . Keep questioning your doctor about it, and seek other doctors advice about what treatment is right for you. Because what i learned from this experience is some doctors are willing to do what other doctors will not. The best of luck to you and you will be in our prayers……you have come to right place for answers the people here will answer your questions, they are a very caring group….good luck to you RonWelcome Jane,
I have had pretty experience with chemo as well — having had Gemcitabine and Carboplatin for over 2 years. I had fatigue, low white blood counts, thinning of hair, but not the loss of hair.
While, it didn’t shrink any tumors, it’s kept the growth to a very slow level.
During one of my chemo breaks, I had radiation treatment — Sir Spheres for the liver. It’s was quite effective. I hope that you’ll get a chance to try it when your bilirubin levels get lower.
I hope this helps,
G
Hello Jane and welcome! Your fears are very understandable, as I’m sure its been a rollercoaster for you in the last months. My Dad underwent Gemzar and outside of causing some fatigue & taste bud modifications, he had no other complaints. He never lost any hair and many others have done well with it as well.
Early on in seeking options for Dad, we looked at Microspheres. Dr. Kennedy at Wake Oncology (NC) performs the Microspheres Treatment (his secretary is Darlene and the Phone: 919-854-2189). I’d read on the board of others that used him. We liked the idea of the option as it was an outpatient proceedure that entailed just a few days in NC, and would allow Dad to continue with this chemo schedule here in NY at home. At the end of the day, he was denied candidacy because his bili levels were too high- they wanted them normal.
Best of luck to you Jane in your quest for options, you’re in our thoughts!
-Tess
Hello Jane…. I am sure for many to answer your questions however, I would like to welcome you also. Many have been treated with Gemzar and have achieved positive results so, why not you? Until others have a chance to respond to you it might help to read up under “Side effects” or, you might want to try the “Search” function by entering the word “Gemzar” (omit the author). But, most of all, I would like to encourage you to continue posting on this board because, support, love and understanding is coming your way.
Hugs
Marion
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