1

(6 replies, posted in General Discussion)

Linda,

It is reassuring to know that yor husband does not have the side effects mentioned, especially the cold sensitivity.  Thank you so much for replying!!
I printed a list of the self care tips for this chemo, and I plan on giving it to her. Thanks again!

So this new Chemo drug that they have added to my moms Gemzar, Oxaliplatin has so terrible side effects, especially if exposed to cold.  We live in Ohio and it gets pretty cold here...has anyone else been on this drug and did you experience any bad side effects??

Thanks,

Jennifer

3

(2 replies, posted in General Discussion)

Hello again all

My mom went to her appointment today after starting back on Gemzar for 6 weeks (she stopped it for 12 weeks) and tumor marker results increased from 199 to 328.  And the dr said we knew this was going to happen (meaning not working anymore) so she decided to start her on a combination of the Gemzar and another type of chemo (not sure of name yet) and she will be getting treatments every 2 weeks instead of once a week.  My question is has anyone else seen their numbers go up while in treatment?  I just hope that this isn't the part where chemo no longer is stopping the cancer :'(

Here is a little history on my mom:
So my mom was diagnosed with Stage IV inoperable Cholangiocarcinoma in April this yearand given 4-6months to live with treatment...she started Gemzar and did 3 rounds of treament and her tumor marker went from 91 to 26 and then 10 at her last check.  Her doctor decided to keep her off Gemzar for 6 weeks and repeat the tumor marker and CT scan.  She had her follow up appointment last wednesday and found that her tumor marker went up to 30 and no change in the CT scan.  So she's gonna keep her off Chemo for another 6 weeks to give her body a rest because shes not tolerating the chemo to well she is realy short of breath and her hemoglobin drops while in treatment...at that same appointment the dr had also told my sister that death usually comes within a year of diagnosis.  Which really confused us because at an earlier appointment the dr was really impressed by the way the cancer was responding to the chemo, and told us that typically only 30% of pts respond to chemo and usually not as much as my mom did and that just increased her prognosis.  Can anyone give us some hope here, we were so hopefull earlier in the year, but was let back down last week....any advice or experiences would be appreciated

4

(10 replies, posted in General Discussion)

Thanks everyone I really do appreciate the input from everyone!!

Gavin do you know if PDT can be used with Chemo?

Thanks,
Jennifer

5

(10 replies, posted in General Discussion)

I was just wondering if anyone has heard of this:

Photodynamic Therapy (PDT)
Photodynamic therapy (PDT) is a new therapy that selectively destroys tumor tissue. A photosensitizer is administered and selectively retained by the target tumor tissue. The photosensitizer is nontoxic in its native state, however, after activation by a light at a particular wavelength, the photosensitizer becomes cytotoxic and produces local tissue destruction. The only relevant side effect seen to date is phototoxicity, which lasts often for 4-6 weeks after drug administration.

Animal and human pilot studies have shown a reduction of up to 60% of tumor volume after administration of PDT with hematoporphyrin. One trial using biliary PDT in patients with unresectable cholangiocarcinoma (Bismuth types III and IV tumors), who failed endoprostheses placement, has resulted in significant improvements in serum bilirubin levels and quality of life scores, with a 30-day mortality of 0% and median survival time of 439 days. Other trials investigating the effect of PDT in patients with unresectable hilar carcinoma who were treated with endoprostheses placement showed a six-month survival rate of 91%. Ninety-six percent of patients improved in terms of cholestasis, performance and quality of life. No adverse side effects were reported.

PDT appears to be a promising therapeutic approach for unresectable cholangiocarcinoma, and combines the two aims of treating cholestasis and reducing tumor growth. The apparent benefit in survival time, however, needs to be confirmed with randomized, controlled trials.



Any views on this??

6

(6 replies, posted in General Discussion)

Randi,
Thanks for the advise, and she does have her moments and when she does we cry with her...good idea on seeing a councler!!

Thanks so much

xoxox
Jennifer

7

(6 replies, posted in General Discussion)

Thanks everyone!!

Marion, I am not seeking medical advice, just some hope for my mom.  I was hoping that someone had a similar experience as my mom is...I will definately check out the website that you mentioned thanks again so much!!!

Lainy, We are trying to stay positive for our mom, we do not let her see us cry or worry at all!  It is so hard to not listen to the life expectancy that they are giving her, we try not to, especially since she has passed the first one that they give her, that alone does give us hope!!  It's hard not knowing much about this cancer, and what we do know is not good!  As far as second opinions she has had 2 other opininons, both with the same prognosis.

Randi, your husband is right about not worrying, but it is so hard and always in the back of our minds what the dr's say, even though she has proven to not be the typical patient.  She has already lived passed what they have told her she would, they gave her 4-6 months with treatmnet all 3 drs that she went to, and she is now going into her 6 months since diagnosis.  To her, we only talk about it when she brings it up we dont want to dwell on it, we never let her see us cry or worry about...we ALWAYS are positive around her, and I do believe it does bring her spirts up!

Thankyou all for commenting on my post, it does me alot to me and I will let everyone know what happens when she goes back in 5 weeks for a follow up!! Wish her luck!!

xoxo
Jennifer

8

(6 replies, posted in General Discussion)

So my mom was diagnosed with Stage IV inoperable Cholangiocarcinoma in April this yearand given 4-6months to live with treatment...she started Gemzar and did 3 rounds of treament and her tumor marker went from 91 to 26 and then 10 at her last check.  Her doctor decided to keep her off Gemzar for 6 weeks and repeat the tumor marker and CT scan.  She had her follow up appointment last wednesday and found that her tumor marker went up to 30 and no change in the CT scan.  So she's gonna keep her off Chemo for another 6 weeks to give her body a rest because shes not tolerating the chemo to well she is realy short of breath and her hemoglobin drops while in treatment...at that same appointment the dr had also told my sister that death usually comes within a year of diagnosis.  Which really confused us because at an earlier appointment the dr was really impressed by the way the cancer was responding to the chemo, and told us that typically only 30% of pts respond to chemo and usually not as much as my mom did and that just increased her prognosis.  Can anyone give us some hope here, we were so hopefull earlier in the year, but was let back down last week....any advice or experiences would be appreciated

Thanks,
Jennifer

9

(6 replies, posted in Good News / What's Working)

Today we got some great news about my mom, she was diagnosed in april with stage IV Cholangiocarcinoma. She just finished her third round of treatment which was Gemzar, her original tumor marker was at 91 before treatment, and her most recent one is 10!!!!!!  There are no treatments scheduled as of now, they will be doing a PET scan and a repeat tumor marker in 6wks.....i just pray that the scan come out clear as well!!!!

Thank you guys!!! xoxo

So my mother who has stage IV,non operable CC just finished her first "round" of Gemzar and her tumor marker went down!!! Before treatment her CA-19-9  was at 91 and after her first round it went down to 26!! Her oncologist said that this was great news that hers has is responded so greatly.  She said in about 70% of cases most people do not respond and in the 30% that do repond, it is usually not that big of a drop.  She was due to start 5FU along with the Gemzar,  but since she has responded so well to them Gemzar, they are just going to keep her on the Gemzar.  With that being said her oncologist also told her that her prognosis is better now.  Such Awesome news, we just pray that she continues to respond well to Gemzar!!

12

(13 replies, posted in General Discussion)

Hello,

My mom is 69and  was diagnosed with stage IV CC and is on Gemzar, she is almost done with her first "round" of treatment, they will do blood work on 6/18/12 to see if her tumor markers have gone down.  Then she will be starting the Gemzar along with the 5-FU.  I hope that it does not affect her, as bad as what I am reading ! She is currently experiencing abdominal pain after she eats, so there for she doesnt want to eat, along with having nausea and she vomited the other night, and running a temp as well.  She is also experiencing SOB, is that common with Gemzar?

13

(3 replies, posted in General Discussion)

Hello again,

My moms oncologist seems to think that it was hemorrhoids, they didnt check, but she does have internal hemorrhoids.  The bleeding has stopped so hopefully that is what it is.

Thanks for the care and concern!!

Jennifer

14

(3 replies, posted in General Discussion)

Hello again,

Just to refresh everyones memory my mother was diagnosed with Cholangiocarcinoma stage IV last month, and given 4-6months with treatment.   She has not had any symptoms other than she has lost some of her appetite.  Well last thursday 5/24/12 she had told me that she has had rectal bleeding, she told me on Saturday, and I asked her yesterday if she was still having this and she said yes.  I dont know about how much other than it leaks when she isnt going to the bath room.  I have a phone call into her oncologist, but I was just wondering if anyone else had this and if it was related to cholangiocarcinoma and what does it mean?  Any advise would be appreciated!

Jennifer

15

(19 replies, posted in Introductions!)

Congrats Joe,

I too got goose bumps reading your post, reading this gives me some hope for my mother.  She was just recently diagnosed stage IV cholangiocarcinoma and give at the most 1 yr w/treatment, she is in her 3rd wk of treatment of Gemzar and is doing good, we will know in 6 wks if it is working and I Pray that it is.  I continue to pray to God that he heals my mom and does not take her to soon from us, I truely do believe in the power of prayer... Good luck to you and keep us posted!!!

16

(7 replies, posted in Introductions!)

Liz,

Hi thanks for replying to my post.  We have been told that it started in 2 different places, the original dr who found it says it started in the gallbladder and her oncologist says it started in the bile duct.  Her cancer is inoperable because it has spread everywhere, pancreas, liver, stomach all throughout her abdomen.  Her oncologist says it is that the tumor started in the bile duct and spread everywhere else, that it "grew fingers" and attached to other organs. They say she is in stage IV and with treatment, we have heard 4-6 months and up to a year.  She is not in any pain right now, just tells the doctors that every now and then she might get a little twinge here and there and thats it. The only symptom that she is having is that she says she does not have an appetite.  We have been researching and researching all types of treatments.  We have called cancer centers of america (the one in IL) and they say they are not taking any new medicare pts that live out of state, we have an appt with OSU this month, and she is getting 3rd opinion from another dr this friday to whom she was referred to by her doctor who did her double mastectomy (she went for a yearly check on monday to her) and my mom had told her about her new diagnosis.  Last friday we went to First Dayton Cyberknife to see if she was a canidate and that dr said that because of the location of the cancer (some being in the fatty lining of the stomach that, it would be to hard of treatment on her) After my mom left the room , we had asked him what he thought and he said 4-6months with treatment and to get her affairs in place.  We are hoping that the chemo that she is on Gemzar will work, we will no after 6 wks of treatment if it is working she will be getting her 3rd treatment today.  If you dont mind me asking what type of chemo did your husbanc have? I am so glad to hear that his chemo was successful, and hope that all continues to go well... Keep me posted

17

(7 replies, posted in Introductions!)

Thanks, I understand that, Im not asking for medical advise just want to hear personal experiences that someone has had that is similar to my moms, just for hope <3

Hello all,

My mother was just recently diagnosed with stage 4 cholangiocarcinoma.  She has had three treatments of Gemzar, and we have been to other doctors seeking more treatment options, hoping for a better answers than we've got.  Doctors say she has a year at most with treatment, another doctor said 4-6 months with treatment.  This all has just come as such a shock to us all, she has no symptoms, other than she says she doesn't have much of an appetite, which we thought it was from her not eating for the week she was in the hospital. That is when we found out she had cancer, she originally went in for gall stones, had testing done, nothing was abnormal, other than gall stones, they went to take her gallbladder out and thats when they saw the cancer.
Any advise ot suggestions? we are so desperate to get better answers and help our mom, we love her so much and I can't bare the thought of loosing her  :'(