Novalis TX machine
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Lyn:
When my husband Tom had his re-occurance with an inoperable tumor – his ‘then’ onconogist told us that chemo or radiation would not help and that he had 6 months at the most.
I would not accept that answer and we got 2nd, 3rd and 4th opinoins. Although they all agreed that the new tumor was inoperable because it involved the hepatic artery – they all felt that radiation and / or chemo could help.
Tom underwett 28 rounds of radiation, then started oral chemo (Xleoda) and later when through IV Chemo (Gezmar and Cisplation) The IV chemo was because a radiologist mis-read a scan and said there was a tumor (Mass) by his bladder in the pelvic region. After about 5 rounds of IV chemo, they discontinued the chemo.
Since that 6 months ‘death sentence’ Tom is still here with me. Some 20 months later. My advice, get another opinoin and find someone willing to take a chance on radiation. It may give your Dad a longer time to be with his family. Even at the onset before Tom started on radiation they told us that they could not guarentee the outcome…but so far we are vey happy with results…anything was better than 6 months.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Lyn, most heartily agree with PCL and Marion. You need another opinion. Glad to hear your dad had a successful Whipple, and it was about the same time Teddy has his. 5 different doctors all told him no chemo would help where his was located. He did fine for 5 years then it returned where his duodenum used to be. He had Cyber Knife and that took care of it for 2 more years. Unfortunately it returned again at the same area and no more could be done. Please try and get a 2nd opinion.
Hi,
I do not understand why the oncologist said that radiation will not work;I STRONGLY suggest you get a 2nd opinion from an “interventional radiologist”.
Oncologists may not always know the new treatments available outside their practice and SBRT is relatively new.
It will be of great benefit to know the size of the tumor in terms of like 3cmx2cm or 3cmx4cm ( in 2 or 3 dimensions) and the exact location–ie: in the bile ducts inside the liver or the bile ducts outside the liver since you mentioned your dad had the bile duct cancer 5 yrs ago; It will provide more treatment options for the tumor.
Again ,2nd radiology consultation is highly recommended.
God bless.Hi Marion
I know that since last August the liver consultant has been monitoring his ca19-9 levels and dad has had numerous CT/MRI scans. The CT scan in February showed something. Dad had a CT scan again the beginning of June and it showed that it had grown 1cm from February.
Silly question but I’m wondering – Are consultants up to date on today’s treatment as in Cyberknife/Novalis TX?
Lyn
Lyn…..Given the nature of this disease and the high rate of recurrence I would focus on obtaining another medical opinion from a center treating a high volume of Cholangiocarcinoma patients. Our UK patients may be able to share some of their experiences with you. Within the next two weeks (until the scheduled appointment with the tending physician) you might want to inquire as to how to go about obtaining this second opinion.
When meeting with the physician for the scheduled appointment I would recommend taking along a note pad or recorder. You would want to know the following: Which test results support the opinion of recurrence of this disease? Based on that conversation you may want to inquire about a referral to a radiation oncologist and if so needed a referral to another specialist.
Hang in there. Too many questions still are unanswered.
Please, stay in touch. We care and we will help you along in this maze of understanding this disease.
All my best wishes,
MarionHi Marions
My dad is already under a liver consultant in Liverpool UK and has been for the past 5 yrs. I have asked what stage my dad’s cancer is and they couldn’t tell me (don’t think that they have done a biopsy).
Any ideas what I can do next?
Trying to stay positive!!
Lyn
Hello Lindylou….I agree with gaining a second opinion from a physician very familiar with this cancer.
Location of the tumor will determine the eligibility for any treatment including, radiotherapy.
Several of our members are UK residents some of which have been so kind as to post their treating physicians on this site.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126&p=1Additionally, you may want to take a look at Helen’s CC website:
http://www.ammf.org.uk/cholangiocarcinoma/specialists/Good luck, keep up the fight, and please keep us posted.
All my best wishes,
MarionHi Lainy/PCL1029
Many thanks for your replies. We have been told that dad’s tumour is 3cm and has been growing 1cm every 4 mths and that it is only in the one place at the moment (fingers crossed that it stays in the one place). We haven’t been told by the consultant what type of CC he has but he has an appointment in 2 weeks to go back and see him so that’s one of the questions that I will be asking. Dad is 73 and he says that all the mentioned side affects have put him off chemotherapy and also what the oncologist said about getting another stroke. To look at him, you wouldn’t think that there is anything wrong with him (quite a few people have told him that including the consultant and oncologist).
Dad is under a hospital in Liverpool UK. They have called this cancer a reoccurance as he had bile duct cancer 5 yrs ago and had the whipples operation which was a success. They have also told him that they can’t operate on this cancer because it’s supposed to be too close to the aorta. I can’t help think that it’s because of his age!!
The consultant/oncologist said that radiotherapy wouldn’t work on this type of cancer but I’m going to have a fight on my hands for Novalis TX machine.
Fingers crossed!!
Lyn
Hi,Lyn,
I am a patient of CC for 2years.
Base on what I know,which is not too much about radiation; Novalis TX machine is used to deliver radiation -SBRT (stereotactic body radiation therapy) directly to the tumors of the lung,liver,bile duct and the brain.The success of the treatment depends on the location of the tumor.
You did not mention what type of CC (ductal or intrahepatic) that your dad’s bile duct tumor is;but my guess is ductal CC.If this is the case,PDT will be another choice if not contraindicated.Post -marketing experience reported that “myocardial infarction have been reported rarely with the use of Gemzar” either as a single agent or in combination with other chemo.
Base on what you described about your dad’s CC treatment plan,I will strongly recommend you to get a 2nd opinion from another radiologist and an oncologist to make sure. How old is your dad and where does your dad live? it will help other members to recommend a good treatment center and doctors for your dad.
God bless.Dear Lyn, welcome to our wonderful family but sorry you had to join us. The
Novalis TX sound much like Cyber Knife which my husband had 3 years ago. I know that with CK the tumor has to be under 7CM. It must be contained in one area. Nothing is guaranteed when it comes to CC. Where is your Dad being treated? Keep in mind that we strongly suggest 2nd and 3rd opinions. Good luck and please keep us posted.Hi
Does anyone know if the Novalis TX machine will work on this type of cancer?
My dad has now had this for a year and the cancer seems to be growing 1cm every 4 months but hasn’t spread anywhere else. He has been told that an operation is out of the question and that chemotherapy could bring on another stroke on the basis that he had one 16 yrs ago. I have heard that this machine works on liver cancer.
Lyn
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