My mums journey so far
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Shazza61-I hope the Abrazane helps! It is so hard when you seem to conquer one thing and another rears its ugly head.
Wildcat-We are patients are Barnes. Dr. Chapman and Crippin are the best of the best when it comes to transplant. Unfortunately, my dad does not qualify for one, but I would do everything I could to convince your mom to at least see them for a consult. If they can do a transplant, she could be in a whole different world in a few weeks!!!
Good luck!!
Stacey
Well we saw doctor and the sample from her stomach was clear and the scan didn’t show anything but they think the cancer has got slightly bigger and they presume her fluid retention is because cells are lining her abdomen and not allowing her stomach to absorb it.she has now been started on abrazane and has high hope of this working which we should find out ourselves as the fluid will go away.she is very positive and excited about what this treatment may do for her so fingers crossed it does its job.
Marion – Thanks for the information about Dr. Lenz at USC. I was not aware of him. I shall do some research and see if we can get in there for a second opinion. Today I heard from Loma Linda and they are referring Randy to another liver specialist there so I will call them tomorrow to see about an appointment. Thanks, again. Blessings, Susan
Dear Wildcat, welcome to our wonderful family. Your M.I.L. sounds like she has a good old fashioned case of denial. We have quite a few members being treated at Barnes and all rave about that Hospital. I agree that she should not wait and perhaps there is someone else who can talk to her? Clergy, doctor..someone. With 4 1/2 years behind her she has done well and that could be a sign of a successful outcome for a transplant. Good luck and please keep us posted.
My mother in law had cc 4 1/2 years ago. It was surgically removed along with about 1/2 of her liver. She had a scan, to be her last scan, 2 months ago. It had been a year since her last scan and the most recent detected a tumor. It is about golf ball sized and trapped right in the middle of her remaining liver. It is close to the portal vein. They did a chemo embolization and it actually shrunk it some. She just finished lung and bone scans and they came back clean. The doctor said she is a candidate for liver transplant and wants to send her to Barnes in St. Louis to see a doctor there. She told me tonight that she wants to wait. She is stage 4 but has no symptoms yet. I am worried that she will wait till it is no longer an option…… She is strong and healthy now but it is her fight and decision. I want to get her on this sight to talk to some of you but she does not want details of her condition and this is too close to home. God bless you all in your struggles with this condition.
Susan….I don’t know whether I had mentioned it before, Dr. Lenz at USC has treated a large amount of CC patients.
Best wishes,
MarionDear Samantha – I don’t have much to add but my husband was on Gemzar and while he had no ill effects while in treatment, it did not shrink his tumors at all. After 3 cycles (6 treatments) he stopped the Gemzar. He has been told he is not a candidate for any other treatment but we are seeking another opinion from Loma Linda. We had a liver specialist from UCLA review his records and he said there was no treatment. Our local physicians have said there is no treatment, but with a rare cancer, I think more than one or two opinions is valuable. Your mom is young and my prayer is that she will get a successful treatment. In the meantime, cherish each moment and hold each other close. Blessings, Susan
Hi All,
I am posting on behalf of my mum (as she is not computer literate), she was diagnosed in April 2009 with intrahephatic (I think is it called) Cholangiocarninoma. Her surgeon Dr Lynch at Mater Hospital Brisbane was 70% sure that he could renove the two spots one located near the portal vein & the other in the right lobe of the liver. However the surgery was unsuccessful as he could not seperate the cancer from the portal vein as it was closer to the vein than the scans have shown. He also said she has small spots on her diaphram. He said her only option was chemo which will never cure her and unless the cancer shrinks enough to not even appear on a scan he will not re-attempt surgery. So mum started chemo approx 10 weeks after he stitched her up, she started on Gemzar and was on that until June 2010 when her kidney function became increasingly worse & they kept her in hospital for 2 mths until it improved. She then was started on 5FU in September 2010 which she has been receiving since. However since she started receiving this chemo she has been bloating in the legs and belly she will bloat then it will go away & then come back, she also has to stick to a very bland diet to ensure she doesnt upset her stomach otherwise she is up all night in agony. Last week she had a scan still without using contrast as her kidneys are not 100% recovered and the cancer appeared unchanged however her oncologist Dr Mackintosh (also from Mater Hospital Brisbane) said that he thinks something else may be doing on such as the cancer on the move or the tumours playing up as its strange after 2 weeks of having a break from chemo she is still bloating its not getting worse but its there. So tonight she has a CT/Pet scan which will show a clearer picture if any cancer cells are floating around as the fluid taken from her stomach was clear of cancer. I also should add her cancer did shrink quite significantly in the beginning on the Gemzar. She is now considering spending $15000 to try a new drug still in the “test” phaze as there has been some success with that however the costs is quite significant when there is no guarantee it will work.
I would be happy to hear from anyone elses side effects from using 5FU and if anyone had a problem using Gemzar & any other chemo treatments that anyone has tried and has success with.
My mum is only 49 and I would like to think there is something out there that will ensure she is with us for many years to come. So far she has gone through chemo with minimal side effects but then hit a brick wall with major issues such as the kidney problem and now this bloating which I really hope is not the cancer playing up.
Samantha
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