1 (edited by Jujubear Mon, 30 Jul 2012 14:21:31)

Topic: New to the board

Hello, I am new to this board, and glad to of found it. My mother is 62 yrs old, and was officially diagnosed with bile duct cancer in Feb 2012. She had symptoms of jaundice on the 2nd week of Jan 2012. After going to the emergency room, to a nearby hospital, and staying there for 3 weeks, with no diagnosis, we decided to move her to a bigger hospital in the city. We live in staten island, ny and are now going to mount Sinai for her treatment.

She was not a candidate for liver transplant because of her getting a biopsy on that area. We were told by the head of the liver transplant dept that the area where her biopsy was done, made her ineligible. She also cannot get surgery due to the tumor location being near major blood vessels.

The move to the bigger hospital helped because she was able to get her stents placed, where as the hospital in staten island had no GI's who wanted to perform it on her. I think because they were not experienced with this case.

She's had her first stents placed in March 2012, and went great. She then started her chemotherapy (gemzar) in April, and was doing well.
Then in May, she started to catch fevers and noticed that her urine was getting dark again. After doing blood work, they said that she will have to change her stents, because one of them got clogged. Her 2nd time around wasn't easy breezy. She still had fevers, and also got fluid buildup in her stomach. After a few weeks, she got better but the fluid did not go down.
She took a trip down to Korea, to see if she can get a laser treatment on the cancer. The doctors advised her that she cannot of the tumor location on her major blood vessels.
She is now back home, continuing her chemotherapy at a lower dose. The dose that she was getting was too strong and her platelets were very low.

My dad, sister and I are her care takers. I can speak for myself that in the beginning I was very upset, and depressed. I did not know how to handle all this. My mother is battling her 3rd cancer, and I just feel insecure not knowing what to expect.
These days, I am trying to be strong her and be there for her. Are there any ways to help with her platelets?
Thank you all for reading. Good luck to you and your loved ones. smile

2 (edited by Jujubear Mon, 30 Jul 2012 14:25:18)

Re: New to the board

I forgot to mention that she is taking diuretics for the fluid in her stomach. It has gone down a lot and has been 2 weeks. Also, she is stage 2. I do believe there is a letter next to the stage, but do not have it on me at this time. I will update that later.

Re: New to the board

jujubear...welcome to our site. You and your sister are wonderful advocates; your Mom must be so very proud of you.
In regards to the low platelets; this site offers a good overview:
http://www.mayoclinic.com/health/cancer … IONGROUP=2

I would also advise to obtain a second opinion from a center "very" familiar with this cancer.  Others may come forward and share names of physicians they trust or, you may find this link helpful:
http://www.cholangiocarcinoma.org/punbb … hp?id=3126

jujubear, has your Mom's fever subsided?  Have you been given an explanation as to why your Mom is retaining fluid?  What are the results of the latest CT scan? Please, continue to be inquisitive and don't shy away from obtaining answers to your questions.  It helps to prepare for a physician visit by preparing a list beforehand.   
Again, a warm welcome and I am sure for others to chime in real soon also.
Hugs are heading your way,
Marion

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

4 (edited by Jujubear Mon, 30 Jul 2012 19:08:58)

Re: New to the board

Hi marions. Thank you for the link, I will check them out after this post! I hope my mom is proud and happy. That's all I want from her. I just hope that she does not think she is a burden on us, because she is not...
The fever has subsided and we were told that it is what patients with this cancer get. For the fluid buildup, we were told that she would have to stay for further testing to find out. But if she chose to do that, then she cannot do the chemotherapy. So, we decided to continue the chemotherapy and take the diuretic to see if that helped with the fluid. She was given antibiotic ( levithrol), and has been taking that every day since July 13th, also. The antibiotic was given to prevent her from infection in her stents. We have not done another ct scan after we started her chemotherapy. From the last mention of her getting one, they said after her cycle she will do one. I will ask to make sure though!
We were recommended to go this hospital from a family friend who is a doctor. She wanted us to see the head doctor/ surgeon of liver transplant, and he then referred us to the head GI doctor( for ERCP) and head GI oncologist. Sometimes I feel overwhelmed going to the oncologist. I am not one of those ppl who know what to ask, and my mother is the same way. So sometimes, I feel like if we don't ask something, we just won't be told anything.... And the treatment center, it's not family friendly. There was an incident I had with a male RN, because he did not want to let my dad sit on a chair...
I will ask my mother if she will like to get a 2nd opinion from another hospital. I just don't want her to feel weak, or feel that we do not trust the doctors. That is what the doctors in Korea said to her. To not think of anything, but to trust her doctor who is giving the treatment.
It's hard to see my mom like this because she was always active and never wanted to stay home. Now, her life is just at home. This past Sunday, her friends from church came by to chat and to pray. I know that she had a great time, and I'm so happy they came!

Re: New to the board

Dear jujubear, I just want to mention that we are big believers in 2nd and 3rd opinions. Listen to your gut feelings they will not serve you wrong. If you feel your Mom is not getting the proper care get another opinion. I am thinking that at Stage 2 she may have other options. Please keep us posted as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to the board

Hi Lainey. Thank you for the suggestion. I have been looking into Sloan Kettering and will speak to my family about it.
I think my reasons of wanting another opinion started when my mother was getting her records to go to Korea, and we realized that we did not know her stage of cancer. Then the unwelcome feeling that I personally get from the treatment center...
I do think that my situation has made me a bit more sensitive. So positive thinking is a must!..

Re: New to the board

Hello all! Just to update...

I called Sloan Kettering to see if we can schedule an appt for a second opinion. I was told by the representative that because mom is receiving chemotherapy, they cannot see her. After she is due an updated scan, then either by the doctors recommendation or by our choice, we can contact them to have her consult with a doctor at Sloan.

Is there a particular oncologist or doctor that you will recommend? I had asked if she can schedule with doctor yuman fong, and she told me that he is a surgeon, so if she was looking to consult for surgery then he would be the guy.
Hope I am doing all I can for her.
Thanks all!

Re: New to the board

Jujubear, you are doing just wonderful, Dr. Fong is at the top of our list! Please don't second guess yourself, your gut feelings will get you through to the right decisions.  We are only human and CC is not! You are a wonderful daughter and I am sure your Mom is proud  and mentally comfortable to have you with her on this journey. Try your best to be very strong as that is how you will get through. I am sure some other members will have some suggestions as well for Doctors in your area.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to the board

Thank you Lainy. Im glad that I found this site for support. Everyone be strong!

Re: New to the board

Hi Jujubear,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you've joined us all here as you will get so much support and help from everyone. There is nothing really that I can add to what Marion and Lainy have said to you about doctors in the US, further opinions etc but I just wanted to stop by and welcome you here.

I was my dads carer during his fight with CC and from what you have told us, I can say that you are doing a superb job for your mum! It is a tough role to play, and no wonder you say that in the begining you were upset and depressed, that is very common. But you are douing everything that you can for your mum and I know how much that will mean to her.

I do hope that you will keep on coming back here as we know what you are going through and we care. We are all here for you.

Best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New to the board

jujubear--

fong did my husband's surgery on may 1st. margins were "close" (not quite positive but also not definitively negative) and he had lymph node involvement. anyway, we definitely like fong. BUT as for oncologists, we loved Dr. abby seigel at columbia pres. her # is 212-305-9781. she works with dr kato who is another top top surgeon. all the best and God bless you!

audrey (aka betzeegirl)

Re: New to the board

Thank you, Gavin for the warm welcome and kind words. I am I am glad that I can get support from you and the amazing people here.

Hi, Audrey.  I hope your husband is doing well! My mother will get her scans In the next two weeks, so we will see what the best thing will be for her. I'm so thankful that you told me about dr fong and the oncologist. Speaking with my family, I think they feel good with the oncologist we have now. He is very knowledgeable, and does answers our questions. I will keep the number down to have with me! Thanks again, and God bless+

Peggy

13 (edited by jimmy82 Sat, 11 Aug 2012 01:28:13)

Re: New to the board

I m also new aboard and it is really appreciable to see all of your informative discussions.... My grand ma was also recently diagnosed with blood cancer and  now a days she is in a nursing home where proper care is being provided to her and i hope that she will get back soon...
aged care homes

Re: New to the board

Jujubear
Are you and your mom of Korean decent?
My mother is 72 and was diagnosed  Nov 2011. She is almost done with her chemo, 2 treatments left. She will have PET scan and CT scan in Sept to check if chemo and radiation had any effect.  She too could not have surgery due to vein involvement.

Anna

Anna

Re: New to the board

Dr. Javle at md Anderson is awesome with cc!

Read my good news! I just don't understand why a bipsoy would make it to where she can't have a transplant?!?!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: New to the board

Tiff...biopsies can spread the tumor cells and will cause the patient to be excluded from the Mayo Clinic Liver Transplant Protocol.

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: New to the board

Jujubear,

My mom just starred with Dr. Maeve
Lowery at Sloan.  Her staff is wonderful and I think she is a very accomplished doctor.  She is a medical oncologist in GI.  She regularly consults with Dr. Fong and his boss Dr. Jarnagin if there is a surgical consult needed.  Best of luck.

Lauren