Topic: Mom diagnosed

My mother was diagnosed with cholangiocarcinoma in September 2007.  She was having pain, and the doctor said she had gallstones that required surgery for removal.  During the surgery they found a tumor and it tested positive for cc.  She has since been treated at Stanford with the Cyberknife and is receiving chemotherapy using Gemzar.  She went for her followup at Stanford about three weeks ago, and they told her they had good news and bad news.  The good news was the tumor they had used the cyberknife on was gone; the bad news was they could see several more tumors on her liver.  They told her there was nothing else they could do for her there.  I guess the tumors on the liver must have been microscopic at the time she had her first PET scan.

My Mom is 75, and want to be one of the miracle patients.  She knows in reality that she probably won't be, but you never know.  I saw her last week, and she looks pretty good.  She has lost weight and is tired, but that is probably due to the chemo.

Re: Mom diagnosed

Hi Kara,

Tough situation but the good news sounds real good!!  My prayers are with you and your Mom as she works through her chemo treatments.  You are a solid anchor for her support through these trying times.

Re: Mom diagnosed

Kara, are sirspheres or theraspheres an option for your mom?  they are specifically aimed at the tumors in the liver.  Originally this was for mets from colorectal cancer, but they have been having luck with CC

Re: Mom diagnosed

Kara,
I agree with thecdr in re: to other forms of treatment.  You might want to collect all medical records (CT scan, MRI, doctor's reports, etc.,) and forward it to another physician or facility familiar with CC such as UCSF.  I am assuming your location is somewhere in Northern California. 
You might want to use the search function on top of the page by entering sirspheres, or theraspheres, or Y-90 in order to peruse the treatment protocols of other members on this board. 
Wishing for the absolute best,
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mom diagnosed

Hi Kara,
I wish you all the best. My mum (68) was diagnosed with cc in April 2007. She's had a whipple and chemo. Her liver was totally tumor free after the operation. But now, she has metastasis in her abdomen, small intestents and pancreas. There is no more hope. My parents are off on vacation to the south of France (we live in Belgium) thinking all is well because her physician decided to lie to them. I've gotten the news today from her general practitioner that the future looks very grim.

I'm so angry I don't quite know what to do... except hope that my parents have the time of their lives together, because it's going to be the last vacation they have together.

Take care and wishing you all the best
Pat

Re: Mom diagnosed

Hi Pat

That must have been devastating news you received about your mother's latest CT scan.  I would have to say, however, that I am really surprised to learn that her physician lied to her about the scan.  My experience, and I think that of most members here, is that the doctors may not have all the answers but generally do not hold back from telling how things are.  They may not rellish giving bad news but they certainly do it.  Was anyone with your mother when the physician spoke to her?  Is it possible that she didn't want everyone to know the bad news so that she could have her holiday with your father without everyone worrying?

All the best

Ron

Re: Mom diagnosed

Hi Ron,
Yes, my dad was with her. Before the CT scan she had an echo of the liver and I was with her at the time. Even when her tumormarkers multiplied by 4 her physician told her she had nothing to worry about, I know because I was with my mum and dad during that consultation. The sad thing is that he admitted to our general practitioner that he thought that was the best thing to say to her. Worrying your patient is not something you do, he said. I trusted him, I really did. That is why this news is so hard to take.  That is also why I am so angry now.

Thanks Ron

Pat

8 (edited by marions Mon, 07 Apr 2008 19:59:40)

Re: Mom diagnosed

Pat,
I so much understand your pain and frustration as I had experienced the same when my husband's disease progressed, and the options for further treatments became limited.
Personally, I have had the opportunity of talking with many physicians in re: to  CC as to how it develops, how the disease progresses, and what treatments may, or may not, be effective in combating this cancer. 
I am sensing an overwhelming amount of frustration with the attending physicians in re: to the treatment of those patients being afflicted with CC and that frustration being directly related to the lack of research in this specific area of occurring cancer. 
Although, scans present themselves to be a valuable tool in determining the disease unfortunately, there are limitations, and it is those limitations physicians are confronted with when making a diagnoses.  In addition too even when taking in account other symptoms such as tumor markers, etc.  until to date a clear picture of CC has not evolved as there are many variations differentiating one patient from the next.  I believe for 2nd opinions (or more) to be in order, and those opinions should come from those centers who have at least some familiarity with this cancer.
Sending all my love and best wishes to you and your family,
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mom diagnosed

Pat

I can understand why you are so angry.  In my opinion, there is no justification for your mother's physician not to be truthful and frank with her, unless he had been told by her that she didn't wish to know.  Otherwise it is not his decision to make.  I would be livid if I found out that information was being withheld from me, particularly if that meant that I could not organize the remainder of my life the way I wanted and be able to put everything in order.  Of course that takes no account of any delay now in your mother having treatment.  This is probably not the right time to do anything about it but I do not think this matter should be left.  I think I would certainly wish to find out if this is the hospital policy or, more likely, the physician's own view.

All the best

Ron

Re: Mom diagnosed

Marions and Ron,

Thank you so much for you advice and kind words. My sister and I went to our general practitioner this morning. He had the results of the scan and could only confirm that my mum is now in the last stage of cc. The cancer has matastasized into the peritoneum. She is already experiencing stomach and digestion problems, constipation and fluid build up in her abdomen, which ofcourse isn't good. Our doctor told us to prepare for the worst and he doesn't give her more than a couple of months at the most. Mum and dad don't know this right now. No need to upset them now that they are on holiday together and enjoying eachothers company. Had them on the phone yesterday  and that was very very hard, because mum sounded relaxed and content.

I also believe in second opinions. And we did get a second opinion, because the first physician we went to see, now almost a year ago told us then there was no hope and mum had 4 months at the most. We then went to the University Hospital in Ghent which is renowned for its cancer treatments. Mum had a whipple, had a very bad post operative two weeks, but came back to us. She was then treated with chemo (gemzar) and radiotherapy. She had a very good 5 months then, where she started going on long walks again, riding her bike and started driving her car again (never thought she'd ever do that again). So we should be thankful for those months.

Friday will be hell, because my parents are coming home. Our general practitioner will then call them and ask them to come over. He will tell them the bad news... really don't know what to expect. But I'm preparing for a very sad weekend.

I did alot of reading on cancer of the peritoneum. The informatie doesn't leave much room for hope.

All the best to you

Pat

Re: Mom diagnosed

Thanks to all for your support.  My parents actually live near Vandenberg AFB, which is considered central coast California.  They commuted up to Stanford where she received her cyberknife treatment.  I am in the Air Force and am stationed at Beale AFB which is in northern California.  I gave my Dad the information about sirspheres and he said he will ask her doctor (that is if he can get it by what he calls the "war department", which is my Mom).  She doesn't like going to the doctor, and says she doesn't want my Dad pestering him with questions.  I told that is what the Doctor is for, and she should vocalize all of her concerns and questions to him. 

Pat, I am sorry to hear about how your Mom's doctor lied to your parents.  I hope all goes well, and I also hope they are having the time of their life.

Kara

Re: Mom diagnosed

Hey Kara,

Hope your dad is pestering those doctors with alot of question. It's the only way sometimes to get information. Also hope your mum is doing ok, which I know in terms of cc is relative.

My mum is in hospital right now. Last friday the doctors drained the fluid that had build up in her abdomen which for her is an immense relieve. She can digest food again and feels alot more comfortable. Today we should get the blood results and the abdominal fluid results.

I know that this will only confirm what we already know. If really nothing else can be done for my mum, my sister and I are going to take her home. I'm taking time off from work and so will my sister to take care of both my mum and dad. Hoping we'll have more good than bad days.

It makes me happy that they had a good time in Southern France, even though mum wasn't feeling all that well.

Kara, may your mum be one of the miracle patients!

Pat

Re: Mom diagnosed

Hi
I'm Krista.  Kara's sister.  I live very close to my mom.  I see my parents once a week..  This last visit, I have learned that their local oncologist read the report from Stanford.  This Dr. has decided that it would be in my Mom's best interest to discontinue treatment.  He will give her two more doses of Gemzar, have a PET scan done, then it is over.  Is this it??  I don't have a good feeling that this Dr. is trying to fight.  His wife is sick (and has been for quite some time) with cancer.  I'm not sure he's even trying with my Mom.  He's got alot on his plate.  Maybe I'm grasping at straws, I just don't think it is time to give up.

Re: Mom diagnosed

Dont give up yet if that is how everyone feels. Go get a second and third opinion. You often dont even have to meet with the doctors, just send the scans and results.

Best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Mom diagnosed

Yes, don't give up. My mum was given up and we went for a second opinion. As a result her oncologist is starting with chemo tomorrow, a combination of Gemzar and Eloxatin. This combination is in Belgium not used for cc, but he says that he's had good results with this combination. Our oncologist also said that he cannot cure my mum, but he can buy her time, and more important quality time. So she's going for it...

best of luck

Pat

Re: Mom diagnosed

Kara and Krista,
you might also want to consider contacting UC San Francisco for another opinion.  Please, let me know if you need help with this.
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

17 (edited by JeffG Tue, 22 Apr 2008 13:11:16)

Re: Mom diagnosed

Kara and Krista.... I strongly agree with Marions, Pat, and Kris.  Gemzar has a lot more side effects in my opinion than some of the other chemos.  I'm currently am on a taxotere chemo regimen and it is holding things in place except for the 2 1/2 month break I took off cause I wanted to go to Hawaii with my wife.  This particular chemo doesn't have accumulative effects and my Oncologist stated that as long as this chemo holds things abay, I could take for up to three years.  The down side of this chemo is you will normally loose your hair initially and it is hard on the white blood cells that fight infection.  So if you don't mind taking anitbiotics and give yourself filgrastim injections for a week after each chemo treatment, then this may be an option.  It has actually shrunk my tumor approximately 40% on my last scan.  You also have to watch out for fluid build up and take Furosemide once a day to make sure fluid don't build up around lungs and keep swelling of ankles down.  I know it sounds like a bother but it really isn't considering I'm on the go and doing basically what I want with in limits.  This Doctor to say he's giving up don't sound good to me.  Unless she has a lot more tumor activity going on or has other serious health problems I would be getting another opinion with out a doubt.  I have tried almost every chemo well it seems like it, and Gemzar was the first I tried. I think a total of , well 7th different regimens. One last thing is the Oncologist knows all the side effects and if they would prescribe and start you on these medication ahead of time you can motivate pretty good.  I have some drowsy spells, but whats wrong with an afternoon nap hey?  Wish you all the best!

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

18 (edited by Kara Mon, 05 May 2008 15:06:42)

Re: Mom diagnosed

I talked with my sister Krista, and she told me my Mom's doctor couldn't even finish reading my the report from Stanford (he actually told my parent's this also) because it was too depressing.  I would hope that my parent's go and get a second opinion, but they are from a small town and my Mom doesn't want to travel.  I guess it is her choice.

Re: Mom diagnosed

It is with heavy heart that I tell you my Mother passed away on July 31st.  Her cancer had spread to her spleen and bones.  She passed at home with her family around her.  Thank you for all your support.

Re: Mom diagnosed

Kara,

My heart goes out to you and your family.  May your mom have peace, and your family have comfort. 

Hugs,

Sara

30-something caregiver

Re: Mom diagnosed

Kara, I am sorry to hear that.  Bless you all.  My heart goes out to you.
Mark

Re: Mom diagnosed

Kara, I am so sorry for your loss.

May your mother rest in peace, and may your family find peace and consolation.

God bless
~Lisa