elevated bilirubin, normal enzymes , no itching!

Discussion Board Forums General Discussion elevated bilirubin, normal enzymes , no itching!

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  • #38688
    gavin
    Moderator

    Hi Varun,

    From what you say, it sounds like your mum has a variety of treatment options available to her and it is also good to hear that her doctor is willing to try them. It is also good to hear that you have consulted 4 doctors seeking their opinions and yes, I can see how it could get confusing getting these opinions from each.

    From what you have said about Dr Numora, and also from what Marion has said about Dr Numora as well then I would definitely consider contacting him. If your mum was willing to travel to the UK to consult a doctor there, then I am guessing that she would travel to Japan to consult with someone there. I can’t tell you what you should do with regards to what treatment your mum should try, but if my dad had the opportunity to meet with someone with this amount of experience then that is something that I would have liked him to do. Perhaps then he would be able to best advise a suitable treatment plan for your mum to undergo in India?

    As to PDT in the UK, I had heard that the trial had stopped but was not aware of the outcome or results of the trial. I am sure that you will come up with the right options for your mum and I wish you the best of luck with this. You are doing everything possible that you can for your mum here.

    My best wishes to you and your mum,

    Gavin

    #38687
    marions
    Moderator

    Varun…you are correct in that bypass surgeries are not performed often in this country; at least we don’t see much of it on this board. I realize that certain conditions have to be met in order to benefit from bypass surgery however; personally, I don’t believe that this is the entire reason for the obvious gap between that of the US and that of other countries. I am more inclined to believe that it has something to do with possible legal consequences for this palliative and highly effective procedure.
    Contacting Dr. Numora is something I would definitely consider. Being that you are based in India and have the option of consulting with specialist from various countries, Dr. Numora would be an excellent choice as he most likely has seen more patients with this disease than anyone else has. Treatment options may not vary greatly from those offered by other specialists however; gaining the opinion of Dr. Numora will assure you an opinion based on his extensive knowledge of this disease.
    We do not have a physician on this board therefore; comments made by any of us are based on our personal experiences with this cancer or, from what we have learned along the way. A professional opinion is always warranted.
    Cyberknife is one of the pin-point radiations directed to focus on a tumor with precision taking in account even the smallest movement by the patient including, movement caused by breathing. It is one of several forms of radiation methods used to treat patients. A radiologist will be able to discuss with you the optimal treatment best suited for your Mom.
    Knowledge empowers us and helps us make informed decisions. You are a wonderful advocate for your Mom.
    Good luck and best wishes,
    Marion

    #38686
    lainy
    Spectator

    Varun, Cyber knife can and does work if the CC is with in the guide lines. My husband had it 2 years ago. It is not a cure all in as much as CC returns, but versus other remedies there are hardly any side effects and it only takes 3 – 5 days. The tumor must be under 7 cm and there cannot be a lot of tumors present. Usually they would do a PET Scan and follow that with the Cyber Knife. When Teddy had his, the tumor was 7cm and he had 25 radiation treatments to get it to 6cm then after 3 months had the Cyber Knife. Good luck in what ever you decide to do. It is great that you have a doctor willing to look outside the box.

    #38685

    Hi Marion,

    Thanks for responding!

    Why would you say my mum’s case is one of the more unusual ones? Is it because of the way its progressing? are bypass surgeries not common for cc?

    Thanks for all your wishes!

    Varun

    #38684

    Hi Gavin,

    Good to hear from you too! Mum’s undergoing the same thing right now, sudden jaundice and no itching unlike when she got diagnosed in 2007.. any idea why that happens? I never thought she would get jaundice even with all the ducts draining.. strange!

    My doctor spoke about cyberknife, he said we could give it a try, and he also said we can try PDT.. but he said it might or might not help.. we never know. Cyberknife and PDT are both available in India (cyberknife was always available here but I didn’t know about PDT till my doc told me.. but I think it will be the first time using PDT at least for cc in Bangalore). I also consulted 4 other doctors, one said cyberknife doesn’t work for cc.. and others said we can try.. one more said chemo wasn’t an option again since she already had chemo (gemox).. one more doc recommended that we should contact one Dr.Nomura in Nagoya, Japan since that’s a reference centre where cc cases around the world are directed to ( they supposedly have the most experience dealing with cc in the world). I’m so confused with all these opinions!

    Also, i tried contacting hospitals in the UK for PDT, I got information that PDT trials have stopped and is not used as a treatment anymore because of high mortality rates.. is this true?

    Thanks so much for responding Gavin! My best wishes for you too!

    Varun

    #38683
    marions
    Moderator

    varun….the function and anatomy of the liver including, the entire gastrointestinal track is very complex. The bypass surgery, including progressive disease blocking your Mom’s bile ducts makes this one of the more unusual cases on this site. It appears that your Mom is responding well to the antibiotics and that is really good news. I wish for continued success with the placement of the internal stent and the possible unblocking of the bile ducts. And, yes, dear Varun, this cancer affects all of us and none of us wish to be confronted with it. I wish for much strengths coming your way. Your Mom is wonderful to have raised such a wonderful child. I am thinking of you and sending many good vibes your way.
    Marion

    #38682
    gavin
    Moderator

    Hi Varun,

    Good to hear from you again, but I am sorry to hear that your mum was in the hospital again. When my dad’s jaundice came back again late last year, he had the yellowing of the skin and eyes, but did not have the itching at all, unlike when he was first diagnosed in 2008.

    You say that your mums doctor says that you should just accept all of this, but did the doctor speak with you about the treatments you mention? And if so, what did the doctor say about them? Would it be possible for your mum to be seen by another doctor for another opinion? Is cyberknife or PDT available as a treatment in India?

    I am sorry that I can’t help you any more. And I know what you mean when you speak of wanting to take some of the pain away from your mum, I thought that many times with my dad. I hope all goes well for your mum when she goes back to the hospital next week.

    My best wishes to you and your mum,

    Gavin

    #38681
    devoncat
    Spectator

    Just my experience, but I had gem/cis chemo regime and it was VERY easy. I did get some growth while on it, but not much. After a year on chemo, my 3 tumors have decreased to 2 tumors, but those tumors have grown.

    I had no sickness on that regime, just tiredness and it takes several hours to get the complete infusion.

    Hope that helps with your decision.

    Best of luck,

    Kris

    #3606

    Hi everyone,

    Mum was in the hospital again last week, she developed cholangitis, and this time the posterior right duct is blocked.. whats surprising is, bilirubin levels were 2.4 on saturday and then it went up to 7 on wednesday, without any itching whatsoever (only 2 ducts on the right lobe are blocked)! Its never been so high except before the bypass surgery almost 3 years back.

    They’ve placed an external drain from the right duct (posterior), and after 2 days did an ultrasound which showed that all the segments were draining ok n there was no block elsewhere. But her bilirubin levels r the same, and eyes and skin are yellow without any itching. Why would the bili levels remain so high despite of all lobes draining? all other liver function tests are normal.. My doc says, he has no idea honestly.. and that we should accept all this.

    Mum will be going back again next week, as they will internalise the external drain and see if they can unblock the blocked duct. She went back in just a month after getting another stent place(third one).. my doc says, the tumor is spreading now across the biliary tree and blocking all the ducts, its getting increasingly difficult to manage it now.

    Wondering if we should try cyberknife or chemo (gem and cisplatin – a new study has been done which indicates some benefit) or PDT. I’m so lost.. i wish i could take some pain from my mum.. i wish i could give some of my life and health for her!

    I thank everyone for all the support.. god bless you all!

    Varun

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