March 18, 2012 at 3:22 am #58125
My doctor said that two weeks for chemo to clear out was ok. So 10 days in your mom’s case does not sound unreasonable.
I am scheduled for PET scan Monday and mapping on Tuesday. And then procedure on April 3. I will keep everyone up to date with progress and hope that this treatment can be the start of a long path for many of us here
EdMarch 16, 2012 at 3:44 am #58124
I was lucky enough to get insurance approval fairly quickly. So that is all set to go. I will continue to update the board. Everyone here has been such a great source of support. I hope that we are all moving toward that day when this terrible disease is controllable and curable.
I hope all is going well for your family and that your mom has great success with the treatment.
My original treatment was the GEMOX + panitumimab trial….I did treatments every other week and had 18 of them…so 36 weeks of treatment
I am going to find out how long I need to be off gem tomorrow. Because I have been on treatment so long I think the plan will be wait until after the radioembolization is done to figure out if more chemo is necessary.. But gem + capecitabine has been mentioned
EdMarch 16, 2012 at 12:35 am #58123
Wish you good luck in your radioembolization, if you please i want to ask you some questions if you don’t mind.
as i read you are on a clinical trial (GEMOX+Panitumumab), what do you mean by 18 cycles do you mean weeks?? my mother was on GEMOX (3cycles), cetuximab 12 weeks , Xelox(xeloda+oxaliplatin) two cycles and i think that we will have to stop oxaliplatin due to neuropathy too.
So what did your radiologist tell you about the duration you should be off gemzar? i’m really confused as my mom now is on xeloda (she hed her 1st embolization on 22nd february and planned for the next one on 10th April) her radiologist told me that it will be enough to stop xeloda (capecitabine) 10 days before embolisation!! and if you stopped oxaliplatin what are their suggestion about alternatives?
BTW also my mom has large mass in her right lobe and multiple (countless in the other).
Thanks alot and keep in touch.March 15, 2012 at 11:57 pm #58122
I hope everything is well with you with regard to your pursuit of radioembolization.
I was told by the radiologist it may take up to a month to get the approval of the insurance company;so be prepare for that since it is mostly out of the liver treatment protocol and the radiologist has to talk back and forth to prove or justify each case.
I read about a dozen articles and found no big difference in using glass or resin microspheres(SIR-Spheres) ;The tumor response rate vary from 20-42% for the glass and from 23-44% for resin microspheres.But if you count the total tumor RESPONSE rate and the stable (NO Change) rate together;the total DISEASE CONTROL rate is very good at 75% even though it is not a cure.But it will buy a couple years of qualify of life without suffering the continuous side effects of the chemotherapy and targeted therapy agents . And hopefully by that time the research results of this cancer will catch up the disease and free us,the patients,forever.
Keep us inform please;and in turn you will help all of us in fighting this disease. No body wants to be here on this board,but if we had been chosen by the higher authority to do so , we have to obey and try our best to help the fellow patients in every way that we can no matter where they are on this earth until otherwise. And I know you will always be one of the pioneer in helping all of us.good luck and
God bless.March 15, 2012 at 10:29 pm #58121
Percy and Fatema,
I am currently working with my radiologist to schedule the radioembolization.
I just finished my 18th cycle on the trial and the skin toxicity associated with the panitumimab continues to take a toll. I also had to stop the oxaliplatin due to nueropothy.
I will keep you up to date as I progress and I have my fingers crossed this will kill the remaining 40% of my cancer
EdMarch 2, 2012 at 12:00 am #58120
Thanks for your reply.
One thing good about that is if your mom did have a higher vascularity of the liver,that may mean the radioembolization your mom have will be more effective and will have a higher successful rate than the norm. That is good news.
Good luck and take good care of yourself, say hi to your devoted sister for me too,your mom is very lucky to have not one but TWO loving daughters taking care of her; she would be so proud of herself too.
God bless.March 1, 2012 at 10:59 pm #58119
Thanks marion for your reply.
Percy your words are really touching, thank you but actually i and my sister are lucky to have a mother like our mom, i wish her to get well soon and i can say that only we are indebted to our GOD who guided me and my family in my mother’s illness by support from the surrounding people with special increment to that great foundation which helped me much.
They are suggesting mixed type due to increased vascularity of the tumor (bu her treating oncologist said that it is not a good diagnosis), he suspected neuroendocrine tumor when i reminded him that mom was complaining from the sciatic pain (back pain) since 5 years for several times so he thought for a while and said “long history of bone metastasis+increased vascularity, did they make chromogranin A to her?” he asked, so we performed it and waiting for the result, the bad part is that the core biopsy remaining in the paraffin block wasn’t enough and they used the slide which may give non accurate result but any way we can’t do another biopsy now so if they failed i may ask her oncologist about the blood test “neuron specific enolase” but my opinion is that a weak possibility to be true.March 1, 2012 at 4:38 am #58118
Jim, thanks to keep an eye on this and follow up to ask the radiologist and keep us informed.
Fetema , dose it mean your mom may actually has HCC-CCA ?
Or carcinoid of the GI as the primary tumor? Wow I am confused too. I thought CCA Mostly is diagnosed from pathology tissue stains and I think your mom had it all done?
What is the reason that lead to their suspecting of may be neurondocrine tumor as the primary tumor now? Because of new symptoms or the back pain your mom had before.
The difference between your mom and the group of the patient is that, you mom has you to find the best treatment plan for her and it will make a big difference for your mom.Tell your mom she is very lucky to have a daughter like you to care for her.
Good luck and
God bless.March 1, 2012 at 1:46 am #58117marionsModerator
Fatema… yes, Stanford has an excellent team of radiologists.
Hugs and love,
MarionMarch 1, 2012 at 12:07 am #58116
Hi Percy and Standtdad,
Percy i read the article but as i got from it, it is telling about metastatic colorectal carcinoma (where cetuximab is proved to be of value and it is the second one in recommendations for Y90) so i think we shouldn’t apply it on cholangio where both of cetuximab and Y90 are still under trial, something more even those in that paper didn’t give us a documented explanation of that finding and they are suggesting it is about tumor aggression (lack of response to cetuximab and to radiation).
My mom did her first session of radioembolization last week and planned to undergo the next session after one month (according to her general condition), when i asked her oncologist and the interventional radiologist they told me that she should only be “off” gemcitapine or xeloda for only 10 days prior to the embolisation (as they increase liver sensitivity to radiation)
Of course i will ask them about that point about cetuximab but which is weird that when i asked her oncologist about cetuximab with radiation he told me that it may potentiate the anti tumor effect of radiation (although he was not encouraging it at the beginning of her treatment).
As i got from herradiologist that response to Y90 is not depending on tumor type but tumor “vascularity” the higher the better.
BTW her radiologist told me that he consulted his professor in “stanford hospital” and he is suggesting that it is cholangio-hepatoma due to its vascularity?????
Is stanford a famous hospital in radioembolisation?,her radiologist was training there for long time.
Sorry i’m a little bit confused and frustrated because of the multiple “NEW” dianoses of my mom (i forgot to tell you that they are suspecting that it is neurondocrine tumor and we are waiting for the result of the immunohistochemistry!!!!!) and also the news in the group are frustrating as every time i visit it i found someone says that his/her beloved one passed away which really depressed me.
Wish you good luck standtdad in your radioembolisation and speed recovery to you and to my mother and all diseased people here.February 29, 2012 at 9:10 pm #58115
I will follow up with my onc and interventional radiologist but my guess is that data is very limited
The study does discuss that the reason for difference may be aggressiveness of tumor or length of treatment of those on centuximab. Which seems reasonable
Either way I will hope that I am different enough from centuximab cohorts in this study to get a more median intraheptic responseFebruary 28, 2012 at 9:58 pm #58114
Your mom is on cetuximab if I remember correctly,the above link may be of interest to you.Please find out why and if you can ,put it up on the board here so the other members will be benefit too.
BTW,have your mom completed the radioembolization treatment yet?
God bless.February 28, 2012 at 9:50 pm #58113
Thanks for your compliment.
Below is an article of y 90.radioembolization .
Please pay special attention starting at section 3.4 and the rest with regard to patient who had Avastin or Cetuximab chemo before y 90 treatment. Ask your radiologist to seek out the reason why first before the radioembolization and ask about the overall response rate after the y 90 treatment in YOUR situation if he/ she can try to give you an answer. The overall response for intrahepatic CCA Is around 46-50%. For extrahepatic CCA, Radioembolization may not be useful at all.
God bless.February 27, 2012 at 9:03 pm #58110
Thanks for all the great perspective. It helps a lot to have someone as knowledgeable as you sorting out some of the same options
Yes I am still on the trial….17 treatments…and I had a scan last week.it was mostly stable….my large tumor went from 4.0cm x 3.8 cm to 4.1 cm x 3.5 cm
The right side has not changed much since treatment 12
So the debate becomes continue with a treatment that is keeping me stable (side effects on skin and neuropathy are no picnic), try new nchemo with hopes of shrinking some more….or embolism ….
I agree with your philosophy….I have two teenage boys and so I am hopeful if I can keep my boat floating for a couple of years….someone will throw me a life preserverFebruary 25, 2012 at 5:23 pm #58112
If I were you ,unless your tumors sizes shrinked enough to allow surgical resectionn BOTH lobes–which I really doubt at this point that resection is the choice before you have the radioembo treatment.I do not know how the surgeon can resect both lobes in your situation since your disease state involved both lobes. So logically ,I will have the radioembo treatment first; the surgical consult at this point before radioembo may not provide you any addition info with regard to resection possibility for you now. Your have one big one on one lobe and some small ones on the other. and I think radioembo is currently the best treatment options for you besides the clinical trials that you have now,
BTW may I ask are you stiil on that clinical trial and what is the result of the most current scans showed about your tumors?What % of the shrinkage of the tumors?Are the little ones COMPLETELY gone? if so you may ask the surgeon to get rid of that one by resection first and leave the big one for radioembo later; But it does not make senses to me to do so. I still believe radioembo for treating both lobe is a good choice for you now unless contraindicated.
It will not hurt to have a base line(MRI or CAt scan) now or withing 4 weeks before your radioembo to compare with the later scans;anyway if I understand correctly, you may need to be off the chemo for 4 weeks before you can have the radioembo.
Resection after radioembo may not be needed depends on your condition.But if you are healthy enough ;you may consider it too but if the CCA recur,for myself,I will re-radioembo or RFA or have SBRT before consider surgery as it is easier to take . I will only explore resection if it is the only option available .
Re-radioembo maybe the choice of treatment if the location of the tumor,the state of your health(ECOG scale 0-1)and the size of the recurrence tumor
(eg=25%) is in your favor ; it can provide a long term survival . As you know ,even you can have surgery for the CCA ;you know that CCA can come back even after you have a good and clear margin . I have clear margin(1.5cm) after resection but the CCA came back after 14 month of Gemzar and 6 month off chemo. Please keep me inform, we are actually in the same boat but just different in timing of boarding ;and if I may say so,my friend , under the available current medical advancement ,it is not how soon we can go abord with a cure on hand ,but it is how much we can do while the boat is still floating .
Do I make any sense to you? good luck and
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