September 30, 2015 at 4:39 am #89839marionsModerator
Tiah……I firmly believe that a tumor board comprised of various, multidisciplinary team should be involved i.e. oncologist, surgical oncologist, radiologist, pathologist. Jointly they will discuss patients for whom they are considering a multi specialty approach. But, most likely they are only found in major centers.
Not sure how it works in Australia, but I assume for those not near a center, consultations with these different specialists must to obtained individually.
From what I have learned, radiation treatments take in account the proximity of tumor to major blood vessels, multitude of lesions, and size of tumor.
There is much to learn about this disease. Have you taken a look at our home page including the webinars presented?
MarionSeptember 30, 2015 at 2:59 am #89838tiahMember
Thanks ladies. I will be going with her this afternoon to get her disconnect from her 5FU infusion (she has to carry around a bottle for 2 days). I don’t think we plan on seeing the Dr today but as soon as I can go to an appointment to see him I will ask him about the choice of chemotherapy. Also, considering how well she is coping with the chemotherapy I was wondering if radiation therapy would have much benefit, or would the toxicity risk be too high. I will discuss this with him also and then keep you posted.September 29, 2015 at 10:55 pm #89837marionsModerator
tia……a warm welcome from me as well. You are correct, your profession allows for a greater understanding of the clinical and biological information of Cholaniocarcinoma or any other disease.
This cancer can be isolating’; connections with others in similar situations is of high importance and very beneficial not only to the patient, but for the caregivers as well. So, I am glad you are here.
As Lainy mentioned, several others from Australia are active or have been active on this site. This is what the Search function revealed. Please note that your conversation is included as well.
Although Gem/Cis has become the preferred chemotherapy treatment of choice, it is however not the only combination used for this cancer. I too would be interested to know as to why the oncologist choose the current regimen over Gem/Cis.
Again, glad to see you here and I wish for many more interactions with us all.
MarionSeptember 29, 2015 at 4:01 pm #89843lainySpectator
Dear TIAH, I am so sorry to read about your Mother but am glad you found our CC Board as we are the best place to be for CC support. First I would like to commend you and your family for doing everything just right! I know we cannot erase your fear as yet but please know that we have had quite a few CC patients, who after chemo to bring the tumor down in size, have gone on to successful surgeries. We also have members in Australia so I am hoping they read your post. Attitude is so important and you all seem to keep your spirits up and that is great. If you go to our Search engine at the top and type in Australia you should find posts from others in your area. Wishing you all the very best and please do keep us updated on your Mother’s progress as we truly care. Oh, and congratulations on not being a lurker anymore, glad to have you join our elite Board.September 29, 2015 at 3:52 pm #11740tiahMember
Hi guys, I’ve been reading on these forums the last couple of weeks but finally decided to join and post about my mother.
Last month, August 2015, a general check up at her GP found some mildly elevated LFT’s, so an ultrasound was ordered. After an ultrasound, she had an immediate CT scan which discovered an approximate 9cm mass located within the liver. Otherwise she was completely asymptomatic. She had an MRI and then was referred to a HPB surgeon, and then had a biopsy on a nearby lymph node approx 2.5cm, which returned negative for cancer. CT on lungs showed lungs were clear. The surgeon ordered a biopsy of the liver, and then were referred to an oncologist. He explained that although there is no portal vein invasion, it is currently inoperable to the the closeness to a vein (I can’t recall which one), however his aim is to shrink the tumor and then go for a liver resection. He seems confident he can do this provided the tumor shrinkage. At this stage we did not even know what type of cancer she had (so we assumed it was just liver cancer).
Once we saw the oncologist (early Sep 2015), we were told the diagnosis was cholangiocarcinoma. He wasn’t very positive when we saw him, stated it was pretty advanced (although clear lungs, no mets, negative lymph node biopsy), however he said theres some abnormal looking lymph node(s) nearby. He decided because she is young, fit and healthy to start her on FOLFIRINOX (oxaliplatin, irinotecan, folinic acid and 5FU). I’m not sure why he decided on this over gem/cis, which seems to be the first line treatment. I have not been able to personally ask him this. She had a port insertion in the clavicle area, and receives treatment every 14 days. She is currently on day 2 of the second cycle and is handling it quite well, minimal side effects including occasional diarrhoea, some pins and needles on the first 3 days of cycle. The oncologist explained that there’s a 50% chance she will respond to the chemotherapy – so we are trying to stay positive.
I’m very grateful because she has amazing family around her at this difficult time. I’m also very proud of her for the way she has handled it, through the ups and downs, the tears and the strength and courage she has had, and how positive she is remaining now that she has started the chemo. Up until starting the chemo she was very scared and emotional, but know she feels she is soldiering through it. I feel bad for my dad, him and my mum have been together since they were 16 years old, and he lost his mother to brain cancer at 15 years old. My boyfriends father was diagnosed with oesophageal cancer one year ago, and although he has had successful treatment and surgery and is currently cancer free, I don’t think even that prepared me for my own mother’s diagnosis. I work in the healthcare field (pharmacist), so I’m very grateful to have a greater understanding of many aspects of the cancer journey, particularly in regards to medications and medical terminology.
I would love to hear from anyone in Australia who is going through a similar journey. Also, anyone who has had experience with FOLFIRINOX in cholangiocarcinoma. We are hopeful that if folfironix fails, we might be able to access a trial medication or possibly have access to some funds for a medication like Pembrolizumab, however we would look into tumor profiling before going down this avenue.
Thanks again for reading, and nice to meet you all!
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