fatema-alzahraa
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Hi,
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.
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.
Dear PeggyP,
I’m really appreciating your kind words, wish your husband will have the best treatment, as you know all of us here are trying to fight that terrible illness with any procedure (even if not approved yet) but with the least complications.
Although i read encouraging information about Y90 but i’m still so worried (espeicially from affection of the remaining normal liver tissue), after the test run the doctor showed me the images (by angio), they were really terrible so i asked him “Do you think she will have a sufficient remaining liver tissue??”, which annoyed me alot that he will mostly inject both lobes in the same session !!!
Wish your husband and my mom speed recovery.Hi Lud,
My mom also diagnosed as metastatic (bone) intrahepatic CC (large mass forming involving two segments and multiple satellites in all liver segments) 3 and half months ago, she was on GEMOX (gemcitabine+oxaliplatin) plus Erbitux (cetuximab) for 3 cycles, her CAT scan showed “Stable disease” but her treating physician was not “satisfied” with that result so he consulted an interventional radiologist who consulted i think others in France (where there was a conference about 10 days ago about Y90), they said we could proceed for that so she is off chemotherapy now and had the pre injection evaluation, they put coils in arteries supplying stomach (to prevent embolisation of Y90) and tested lung uptake which was 16% (they injected a radioactive substance and then measured its lung uptake which shouldn’t exceed 20%)As regard its efficacy, as i understood cholangiocarcinoma is the third recommendation for Y90 (after HCC and colorectal metastasis), efficacy in it is depending on tumor vascularity, the more the vascularity the better the response due to more drug delivery to the tumor. but most cholangio are not hypervascular.
I wish that i added something to you but regarding survival i don’t believe in it eve i don’t read it in any paper i believe that every one has its time and no one could know it except GOD.
Wish you and my mom speed recovery.
Hi Percy,
I think that targeted therapy still has a very long way before it could be approved so we can only undergo the trials in addition to chemo.My mother’s general condition is better now except for the general fatigue after chemo cycles, she was sooooo scared before CAT scan and she cried much, you know what… that was the first time i realized that mom is caring about the illness (she is a pharmacist so she knows that she has a tumor but i thought that she doesn’t know how serious is her condition), after CAT scan i was happy that she is stable but actually i was frustrated (also her oncologist) that there was no regression, i asked her doctor whether was the treatment stopped progression or it is the natural course of the illness and 3 months will not show progression, he replied that no body could answer that questions, when i asked him about his expectations, he said tha tshe may remain stable disease (which means he doesn’t expect regression
)Hi,
Thanks to u all for your replies.
Percy, i asked about mixed type (because i suspected it since the beginning since i saw the elevated alfa feto protein), i consulted her oncologist who said there is no method to diagnose it clearly, the interventional radiologist said that alfa feto protein is highly NON SPECIFIC and the CAT scan shows higher possibility of ICC or metastases rather than HCC.He is replacing gemzar with xeloda as he thinks that it is not that effective (he isn’t satisfied with the results of the previous 3 cycles), also he told me that we are waiting for the interventional radiologist till he comes back from a conference in France (about Y90) and he will consult them about my mom’s case if they approved it in her condition she should be off Gemzar for 6 weeks as it increases hepatic sensitivity to radiation.
In Egypt CAT reports are as i posted, for further details i discuss them with doctors, her CAT scan were reviewed by the radiologist, the oncologist and the interventional radiologist.
Regarding Erbitux, when i asked the oncologist he said that he wasn’t convinced by it from the beginning (he gave it to her because i asked him to do so…) but finally we decided to continue it till completing the 12 weeks.
BTW Percy, i asked him about sorafenib he replied that there are no recommendations to use it in CC, regarding panitumumab he told me that it is similar to cetuximab but “Humanized” so only less possibility of anaphylaxis.
Sallypa, thanks alot and waiting for your reply.
Hi,
Percy this is the full reportQuote:REPORT
Compared to the previous CT scan dated 27/10/2011, the current scan revealed no interval changes regarding:
*The size, number and distribution of previously detailed hepatic masses.
*The associated mild segmental intrahepatic biliary dilatation noted around the main mass.
*The multiple celiac, para-aortic and retro-crural adenopathies.
*The multiple expansile lytic osseus lesions are noted at the lumbosacral vertebrae and right iliac crest, the largest at the right sacral ala, measuring 5cm.
There is however starting sclerosis of the DV12 lesion reflecting therapeutic response (healing).
*The multinodular thyroid gland.
*No other interval changes or denovo lesions.
OPINION:
Stable Disease (SD).i thought about mixed type but when i asked her oncologist he said may be but we can’t know, the interventional radiologist said it looks like cholangio rather than anything else!!!
When i searched the internet i found that ICC may be alfa feto prot. secrteting.
But if i supposed that it is mixed it doesn’t make sense that alfa feto prot is declining and CA19.9 is increasing, as u know HCC is chemoresistant.
Could u tell me if u have any ideas abut Y90 or Xeloda??
Thanks.My beloved mother was recently diagnosed as metastatic intrahepatic cholangiocarcinoma (three months ago), i was really shocked and although i’m a physician i hadn’t the courage to search the internet about this illness because of the discouraging words allover it but when i found that foundation it helped me much.Here, people are so cooperating they exchange their experiences, sufferings, treatments, side effects and how to manage. Really it is a very useful, updated and supportive site.
Fatema Al-Zahraa
I give permission to allow for the distribution of the content of my post.
Hi Katrin,
Thank you very much for your reply and sorry for your anxiety and confusion wish you will find no metastasis, try to be more optimistic.Recently i discovered that it isn’t Gemzar which caused that horrible pain, oxaliplatin causes phlebitis (as if you are drawing a red line over her vein) so when they give Gemzar after it she couldn’t tolerate. so finally to solve this problem she received oxali. in a line then we used another line for Gemzar, yes gemzar causes pain but not as severe when given in the same line where oxali. received.
Hi Percy,
Thanks for your information, unfortunately i couldn’t find the article by dr.Jensen so if you please could you give me the link not the title.In the trial by Dr.Gruenberger they concluded that “Neither PFS nor OS were affected by K-ras status” and when i asked my doctor he answered that gene mutation doesn’t show significance in CC (not as in cancer colon or lung cancer) so he told me that we will gain nothing if we tested gene mutation.
Regarding Panitumumab i think i’ll postpone inquiring about it till my mother’s follow up CT (i mean if i found that cetuximab is not working) but i think its complications are major (as edmund said severe infected rash) which as i understand wasn’t easy.
When i told you about radiaion therapy and cetuximab i asked her doctor and he answered me that cardiopulmonary complications occured in patients with head & neck SCC and the cause is that they received radiation nearby the heart so complications occured but my mother received radiation over her lower back due to bone met. as i said before.
My mother’s cetuximab dose isn’t reduced some clinical trials gave 400mg/m2 (loading dose) followed by 250mg/m2 weekly (which is the same but weekly)
Hi Percy,
My mother’s acne is not that bad it causes her only on & off itching which is not severe so until now we are not going to use antibiotics but i’m inquiring if “mild” rash is a bad sign ???
i’m sure that you read that article about targeted therapy in cholangiocarcinoma but i’ll send the link to you in case you didn’t read it
Cancers 2011, 3, 2243-2254; doi:10.3390/cancers3022243
i wish to know your comment on it from the table showing ongoing trials and results of previous two trials (in austria & france) i think cetuximab may be of help, i don’t know if the results of the two ongoing trials will be published soon but i hope, something more i preferred cetuximab as it showed the least side effects, as you said pneumonitis and lung fibrosis are not easy also avastin may cause GIT perforation so when i consulted her physician he said that erbitux has few side effects (mainly acne).Hi Percy,
thanks for your nice words i wish to help anybody when it is possible, i know how everybody could feel when somebody he cares for is affected by that disease, although i’m a doctor but really i have panic attacks since my mother was diagnosed and really i feel that i need any support frequently, i believe that not only patients are suffering but also their caregivers specially when seeing them in pain
As regard my mom thanks GOD she is mildly better but she is still suffering from the back pain ( as her doctor said ther is partial response to radiotherapy), she started her third cycle today (GEMOX) cycle was supposed to be given last monday but unfortunately her neutrophil count continued dropping down and she received (Neupogen) after the injection she got viral infection and was feverish for 8 days.
She is also in Erbitux (cetuximab) for the forth week but rash is not as that much so i’m inquiring if that means no response ???
She is supposed to have CT scan next week after day 8 for evaluation.
I read a post where you were asking about Panitumuamb so if you please could you tell me if it showed a better effect than cetuximab??? i know that all these drugs are still under trials but we are searching for any hope in treatment.
Thank you so much for your concern and advices for everybody here.
(You can call me using “she”)Dear Bob,
I’m a physician (cardiologist), according to my information ascites occurs when liver function is disturbed, liver function tests are serum albumin and prothrombin time from which INR is calculated, neither liver enzymes nor bilirubin reflect liver function so i think you should consult your treating physician about that and if she should receive human albumin or plasma transfusion?? Something more unfortunately in cases of malignancy ascites (actually any fluid collection in serous cavities of body) usually are rapidly accumulating but still it could be managed. wish her speed recovery.
