Topic: The Cancer is back in Action - Advice Please

Hi Everyone,

Many of you may or may not be familiar with my mother's case, so just a quick recap. She was diagnosed in December with ICC with a large tumour of 8x9cm, two smaller ones in the liver as well as some lymph node involvement, she is also 46 years old. Having said this, after the biopsy was completed and a metal stent was inserted she started the gem/cis regimen in which she had some success. The largest tumour shrunk in half, one of the smaller tumours dissapeared and the other one was only 1cm. Her lymph nodes shrank slightly and that was that. She continued with the chemo until the doctor and her decided it was break time as she had already completed 7.5 cycyles by June. She started to experience strange symptoms after, pain in her shoulders, lower back etc. They ended up doing a repeat scan in July and everything was stable which was very good news. Unfortunatley, her condition worsened ... she ended up losing more weight, had bad fatigue, was burping all the time, had a fever here and there but nothing. We went to the ER and they did a chest xray for infections but didn't find anything and then two weeks later she had another ct scan (this is now September). When we got the results of her ct scan from September we were saddened to hear that her condition did in fact worsen, all the little tumours that had once dissapeared were now back again and active, her largest lymph node is now 4cm as opposed to 2.5cm, there are many more lymph nodes involved and apparently there are 3 nodules measuring between 2mm-6mm in her lungs. I couldn't believe it, the doctor on the other hand was concerned but said he does not want to give up even though we are calling in palliative care to ensure that pain is managed well a long with other symptoms. The doctor also decided that he would put her on Xeloda, 1800 mg for 2 weeks on and one week off. Seeing as her condition is not the greatest, has anyone been on this chemo regimen with advanced liver disease and seen success? I really am concerned, I need her to get better, feel stronger. She is not able to sleep as well, and complains of back pain all the time, she also has mild ascites.

If anyone could please provide me with some advice as to what they have done to combat liver disease that is advanced, it would be greatly appreciated. Unfortunatley, it seems as though Canadian oncologists have differing opinions about Cancer as opposed to Americans. I have seen on this forum that many people have used radiation, medical marijuana, and other chemo cocktails ... his response to radiation was that it was still being tested and hasn't been proven in terms of success but I feel like many of you have had success. This has become a very difficult situation, the doctor that she has is great ... he is not a negative person and I feel like he cares about my mother but I would like to exhaust all options to ensure that she feels better. Please share your experiences with me so that I have something to share with him and my mother so that she doesn't ever give up hope.

All the best to each and every one of you<3

Re: The Cancer is back in Action - Advice Please

Dear Milenzz, oh, I am so very sorry about your Mother. If you type in Xeloda on our search engine at the top a ton of posts will appear on Xeloda that may help. I have a question as I am not versed on your system in Canada, is there a possibility your Mother could go to Mayo Clinic in Rochester Minnesota? I don't know where she is being treated but Princess Margaret Hospital is one of the tops for CC in Toronto. I am so sorry your family is having to go through this Journey, it really 'stinks'. I know you will hear from some more members  please stay strong and hopefully just a change in Chemo may be the ticket that is needed. Please let her ONC know she is in pain, comfort is the key word. Wishing you the best and let us know how she progresses.

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: The Cancer is back in Action - Advice Please

Hi Milenzz;
I'm also from Canada, Toronto actually, so we're practically neighbors.  My husband has hilar cc and is being treated at Princess Margaret by Dr. Moulton. They seem to be extremely well versed in cholangiocarcinoma at the PMH.   He is about to start xeloda and will be also having radiation at the same time.  I'm afraid I can't tell you how the xeloda  works just yet.  I'm so sorry to hear about your mom.  This is such a horrendous disease.  I wish you all the best.  Peace.

Tanya

Re: The Cancer is back in Action - Advice Please

Thank-you Lainy for your insight and support! Tanya, it is good to know that there is someone in our area that is going through the same thing - I feel as though this is such a rare disease that it's hard to connect with anyone in the GTA!
I'm interested in the kind of treatment and service you get from Princess Margaret. We have opted to receieve treatment from Credit Valley Hospital as we live in Mississauga and it's very convenient (a few minutes away from our house) as opposed to driving through traffic to downtown - even though I work a few minutes away. I feel as though our oncologist is well versed in his area of expertise but I don't think that any type of billiary cancer is his specialty. I know he has mentioned to us that he does keep close relations with dr's from the PMH but now that my mother's condition has worstened I am thinking that PMH might be a better solution.

Are you pleased with the treatment options you have been provided with? Does Dr. Moulton have good bedside manner?

Re: The Cancer is back in Action - Advice Please

Milenzz... I am very sorry to hear the news. I would suggest getting a second opinion. It never hurts to have more than one option. I originally was being treated at MD Anderson in Houston, Texas USA but then switched to Cancer Treatment Centers of America in Tulsa, Oklahoma USA because I wasn't convinced that they were exploring all my possible options. And I went from being told a transplant was my only choice to after 6 months of chemo and radiation i was able to have a successful liver resection surgery. My treatment was tough and kicked my butt but I'm alive and healthy so it was completely worth it!

I would just do some research and see what other options are out there. It doesn't have to be anything personal against her current oncologist but its important you both feel like every option she has is being exhausted...

I know its a long way but If you would be interested, I can get you my radiation oncologist and medical oncologists information to set up a consult

At any given moment you have the power to say: This is not how my story is going to end! -Unknown

Re: The Cancer is back in Action - Advice Please

Milenz....I agree with obtaining a second opinion with a specialist "very" familiar with this cancer. Enclosed is the list of the Medical Advisory Council for our foundation:
http://www.cholangiocarcinoma.org/medic … ouncil.htm
Hugs,
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

Re: The Cancer is back in Action - Advice Please

Hi Milenz; we are very pleased with John's treatment so far at PMH. It's not perfect but the doctors seem to really care. Dr. Moulton is lovely. She is very professional, knowledgable but also honest and realistic.  We have an entire team of doctors, but Dr. Moulton is our main oncologist. We also like that we have a Nurse coordinator that we can call or email with questions - she is absolutely wonderful.  This is all still very new to John and I and we are just learning about this horrid disease, but we do feel like we are in the right place.  I'm sure that your doctor consults with docs at PMH but it probably wouldn't hurt to have a second opinion from one of the cc docs at PMH.

Tanya