Introduction: 55 y/o male with a recurrance.

Discussion Board Forums Introductions! Introduction: 55 y/o male with a recurrance.

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  • #58569

    Hi PCL,

    I have consulted 2docs in BRussels. The 1st in oct last year did not offer anything new but about 15 days back I had 2 sessions with a ‘digestive oncologist ‘ who said that resection should be attempted. we are awaiting the result of two more rounds of chemo to decide.

    Sorry for the trouble with the spelling and thanks for all the effort. Will keep you posted.

    #58568
    marions
    Moderator

    So far I have received one response, but no advise was given. I will continue to reach out.

    #58567

    Thanks, Marion. Will wait for your reply.

    #58550
    marions
    Moderator

    Prayersforall…..at one time we had a relationship with a physician in India, who had distributed our brochures at a medical conference in Calcutta. He also ever so graciously helped us with our numerous questions, but two years ago we lost our dear friend to this disease.
    I do know that occurrence of Cholangiocarcinoma is quite prevalent in India. This has been confirmed by the many physicians I come in contact with over the years.
    The Cholangiocarcinoma Foundation has a listing of major international cancer centers however; we have not been able to receive notice from a reputable source as to where the best place in India might be. I would assume it to be in Mumbai and/or New Delhi.
    Having said that, I have contacted several physicians and am awaiting their response –as soon as I hear back – you will know.
    Hugs,
    Marion

    #58551
    pcl1029
    Member

    Hi,
    Myelosuppression is my only intended word to use, depression was a typing error.sorry, It means the chemo will depress or decrease the production of RBC,WBC Platelet by the bone marrow,especially from irinotecan .

    Apart from that, I show the pathology report (biopsy) to my pathologist who had come from John Hopkins ,his overall impression is this; he was not sure if that biopsy description is from you or you directly quoted from the summary.
    Any way just based on your message alone, Cholangio CCA is likely he also mentioned your mom’s lung looks ok too since the ttf-1 is negative.he thought that the CDC-2 should be CDX-2 instead,and that is why he doubted that the biopsy report you put on the message is the original description quoted from it.
    They are very picky when they want to give out their opinions,but don’t worry ,he is my friend. Next time just make sure you quote from the report directly.

    I don’t really know any place in India that is the top medical institution for the radiology oncology. My guess is the hospitals that are affiliated with the top universities . Since you are in Brussels ,Europe. Can your mom get treatment from there. Interventional radiologist is the one you should talk to before the tumor metastasis. The lymph node mentioned may not be anything at this point but I am not sure it will affected the decision of the radiologist who you will consult later.
    May I ask what is your profession and do you know anyone in the medical field in Brussels.? I know one of our member call Lud had the radioembolization Done in France,it is close to Bressels,right?
    All the moderators on this board are volunteers and at this point we may not have enough knowledge to know about the best medical institutions outside the States or Canada for CCA.
    I AM NOT A DOCTOR,but I still do not understand about your mom’s chemotherapy,it seems to me that the oncologists are trying the available regimens until the one that works but in the meantime the tumor is still growingCompare to the regimen before the change on December,2011.
    I just do not feel comfortable about the situation , I will seek other option if she is my mother.
    God bless.

    #58566

    Hi PCL and Marion,

    Her latest blood report of 7th February before starting 5 fu are
    Haematology

    EDTA found
    Rbc 3.34
    Haemoglobin 9.4
    PVC 30.8

    RBC indices. MTV 92.2. Mch. 28.1 mchc. 30.5
    Total WBC count 7070000000
    Platelet 120000

    Differential counts within limits

    Creatinine 0.8 -has been within the normal range since the start..

    sGPT 47 – within 9-52range since the start of treatment in June l

    CEA 53.8 ca19.9. 990 ca-125 307 latest values as already mentioned

    The latest ct scan report on the liver is

    ‘Again noted are heterogenously. Enhancing mass lesion involving the segment v, viii and vii now measuring 11.1 by 7.8 cm (9.7 by 5.2 cm previously )
    Again noted is another enhancing focal lesion in the segment ii now measuring 1.7 by 1.0 cm(same size since oct 2011). CApsular retraction is noted adjacent to mass. Small peri portal lymph nodes are again noted. The porta hepatitis is normal. The intrahepatic portal venous radicals are normal. No evidence of intrahepatic biliary radicular dilatation. The hepatic veins and intrahepatic portion of inferior venacava are normal.’

    PCl, I did not understand the meaning of ‘ myelosuppression depression’. My mother is tolerating the 2nd cycle of 5fu better . Initially the opinion of the assisting doc was to go for a 3 week cycle in view of her age and that we are now in the third line of treatment but in view of my mother. ‘s reasonable tolerance to chemo by the Grace of GOD, our oncologist insisted on a 2week cycle with the neurogen given right after the 48 hour infusion.

    I don’t know if this is the right forum to ask but I wanted feedback on radioembolization, PDT, cyber knife facilities within India.

    Thanks

    #58565

    Hi PCL and Marion,

    Her latest blood report of 7th February before starting 5 fu are
    Haematology

    EDTA found
    Rbc 3.34
    Haemoglobin 9.4
    PVC 30.8

    RBC indices. MTV 92.2. Mch. 28.1 mchc. 30.5
    Total WBC count 7070000000
    Platelet 120000

    Differential counts within limits

    Creatinine 0.8 has been within the normal range since the start..

    sGPT 47 within 9-52range since the start of treatment in June l

    CEA 53.8 ca19.9. 990 ca-125 307 latest values as already mentioned

    The latest ct scan report on the liver is

    ‘Again noted are heterogenously. Enhancing mass lesion involving the segment v, viii and vii now measuring 11.1 by 7.8 cm (9.7 by 5.2 cm previously )
    Again noted is another enhancing focal lesion in the segment ii now measuring 1.7 by 1.0 cm(same size since oct 2011). CApsular retraction is noted adjacent to mass. Small peri portal lymph nodes are again noted. The ports hepatitis is normal. The intrahepatic portal venous radicals are normal. No evidence of intrahepatic biliary radicular dilatation. The hepatic veins and intrahepatic portion of inferior venacava are normal.’

    PCl, I did not understand the meaning of ‘ myelosuppression depression’. My mother is tolerating the 2nd cycle of 5fu better . Initially the opinion of the assisting doc was to go for a 3 week cycle in view of her age and that we are now in the third line of treatment but in view of my mother. ‘s reasonable tolerance to chemo by the Grace of GOD, our oncologist insisted on a 2week cycle with the neurogen given right after the 48 hour infusion.

    I don’t know if this is the right forum to ask but I wanted feedback on radioembolization, PDT, cyber knife facilities within India.

    Thanks

    #58564
    marions
    Moderator

    Prayersforall….Biopsies are tricky and do not always able to reveal enough of the cancer cells. I do know that physicians in India are quite familiar with this disease, but I would ask has to how many patients your Mom’s physicians have treated with bile duct cancer.
    Hugs,
    Marion

    #58563
    pcl1029
    Member

    Hi,
    Have your mom had a MRCP done to detect the possibility of CCA or stricture in the common bile duct or the distal portion of it?
    If your mom have already had 2nd opinion by the liver specialist ; the next logical step will be an interventional radiologist consult to see whether radioembolization for the large size liver tumor is appropriate ,radioembo if indicated will have less side effects than 5fu+irinotecan; After the MRCP procedure,if there is stricture in the common bile duct ;then explore the possibility of PDT or cyberknife as well.
    I will do more study on your biopsy report and to see what my histologist friend’s opinion on your mom’s result will be ,by the weekend if possible.
    I still do not understand the change of the regimen away from Gemcitabine and Xeloda. 5FU+irinotecan is tough to take;grade 3 and 4 myelosuppression depression may develope .
    Remember, the treatment triangle for CCA(as well as for most cancers but not all) are surgery,chemotherapy and radiation treatment.
    Did your mom had CBC and CMP lab done and are the liver enzymes within the normal range; Neupogen(filgrastim) or the long acting one is appropriate for the low WBC due to myelosuppression.
    God bless.

    #58562

    Thanks PCL and Marion. My mother is being treated in India and we are consulting a reputed medical oncologist referred to us by a liver specialist. we have obtained opinions from oncologists at major hospitals within the country. The unanimous opinion was that inview of large size of liverlesions chemo should be immediately started.

    No other procedure except biopsy has been performed. Of course colonoscopy and normal upper hi endoscopy we’re done. The biopsy report of June 2011 is under-

    ‘neoplasticism cells express ck7, ca19.9, wt-1,CDC-2, vocally weak positive and negative for ck20, CEA, ck19, ttf-1, ER, PR, synaptophysin,chromogranin, ck5/6,,mesothelioma,mammoglobin. Controls are satisfactory’

    She has no jaundice and her sgpt tests done before every chemo are satisfactory till date. But in the last 2to 3months she has had to take injections to boost WBC counts twice and now with the 5 fu combo is taking the injection for neutrophils as already mentioned.
    Her last ct scan on 7th feb 2012 ( oral,rectal and IV contrast) is under-

    Summary

    Marginal increase in the size of right lobe conglomerate hepatic focal lesion.
    Relatively stable left lobe lesion.

    Stable size sub centimetre right lung module.

    Other incidental and non critical ct findings.

    I didn’t know how much is relevant..regarding 2nd opinion as mentioned by PCL what are the modalities?

    Thanks.

    #58561
    marions
    Moderator

    prayersforall…when is the next scan scheduled? After completion of 6th treatment? I also wanted to mention that often times the CA 125 is watched in addition to the CA 19-9. Remember unlike other cancers with definite markers, tumor expressions of CC are not defining.
    Hugs
    Marion

    #58560

    Hi PCL

    our oncologist believed the origin was pancreatic and hence believed gemcytabine was the primary treating drug, thus he replaced the xeloda with oxaliplatin hoping to achieve better result. But now even after 8 months of diagnosis when nothing has been seen in pancreas or gall bladder he has decided to start her on 5 fu immediately with irrinotican and leucovorin as mentioned by me.

    Regarding Ca125 the whole body pet ct report of oct 2011 says
    ‘ovaries and uterus unremarkable. No significant pelvic lymphadonopathy’

    Hope it makes sense.

    Best wishes

    #58559
    pcl1029
    Member

    Hi,
    What was the reason after December to switch to a different chemo while she is doing so good on the chemo?
    AFP=1.7, that means the original of the cancer may not from the liver itself.
    CA125 is mostly related to ovarian cancer and I did not see you mentioned anything about it. CA125 if >65 normally indicated of malignancy(about 90% chances);but if patient have fatty liver; hepatitis chronic or active;or type 1 diabetes,than the Ca 125 level will be affected by them too. So the CA125 is not a reliable biomarker for CCA.However ,elevation of CA19-9>129;CEA>5 and elevated CA125 may support diagnosis CCA.
    Your mom had both colonoscopy and EGD done and find nothing,so that is good news knowing that the malignancy is not from the GI tract.
    There is a high sensitivity and specificity for diagnosis of CCA when CA19-9 >129;likewise Ca19-9 will be MUCH higher in pancreatic cancer patient .

    Have your mom had a MRCP done to detect the possibility of CCA or stricture in the common bile duct or the distal portion of it?

    I am not a doctor and I am just a patient like your mom for 34 months;but the BEST lab and scan report was when she was on the Gemcitabine and xeloda regimen;I don’t know why the doctor changed the regimen,usually in the States,if the regimen works well they will not change it unless disease progress or intolerable side effects occur. But this regimen is for some reason works better for the extrahepatic CCa than the intrahepatic CCA which means unless your oncologist finds out differently,and your mom have not had the MRCP done; I will SPECULATE that the cancer may be originated in the distal bile duct area.
    2nd opinion from a liver specialist (they know more about the liver and the bile duct physiology than most of the oncologists)and radiation oncology consult is recommended especially if the tumor are not matastasized.
    Tumor of unknown origin is also a possibility.
    OB/GYN consult for your mom is also warranted.
    Keep in touch and
    God bless.

    God bless

    #58558

    Thanks, Marion. I am glad I found this site.

    #58557

    Thanks, Marion. I am glad I found this site.

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