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obrienfam5

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  • in reply to: Trying to make sense of it all #97563
    obrienfam5
    Participant

    Gavin,

    so yes, a very long time between posts!  I am now 7yrs, 6mos., Post diagnosis and resection surgery.  Subsequently, I have undergone 4 VATS to remove ICC Mets in my lungs and 3 SBRT to address 3 other Mets in my lungs over the first 5 years Post diagnosis and initial resection.  Over the past 2.5 years I have had no evidence of disease in either my liver or lungs.  No chemo at all.

    Over the past 4 years, Patty Corcoran and I kept track of each other as she was diagnosed a month prior to me and by my limited reading was the only long term survivor that I had found.  Unfortunately, just a few weeks ago we lost Patty as she was no longer able to keep this dreaded monster at bay.

    So why my reengagement after so long.  Well, I really never left, just read more than commenting and now I am back to trying to understand what the future may be.  There is very little that I have found out there of long term survivor stories or insights.  I want to continue to be one of those and I want to know of others such that I can continue to look forward with even more confidence.

    Thanks

    Ken

    • This reply was modified 1 year, 2 months ago by obrienfam5.
    obrienfam5
    Participant

    Marion

    Now you see my enthusiasm for the possibilities! Imagine being able to take a biopsy, culture the tumor into many small replicates, and then testing each in real time to old drugs, new drugs, different doses, etc. such an approach could speed up the process of finding both individual and generic means by which to both slow down and stop the tumors.

    It appears that the research team has been able to grow breast, lung, and a few other cancers in the lab. I want to add CC with the same goal as the published work, finding a way to end the insanity of surgery being the only option for he majority and offering a faster way to find new ways to eradicate the repeat occurrence of after the fact tumors.

    Ken

    obrienfam5
    Participant
    obrienfam5
    Participant

    One and All: This is exactly the kind of passion I am looking for, but first some clarifications.

    The research I am speaking of is not on tumor samples post surgery and such but on actual tumors grown in the lab. The great aspect of this approach is that different drugs, combat ions, and strengths can be evaluated in the lab in a near “live” situation. Such an approach can get at the fundamentals much more quickly, and on a personal level, than can be achieved thru long term studies. In the case discussed in the article, the patient, and believe or not one of the researchers, each had a condition that causes recurring tumors with no known or proven treatment method, sans surgery. Success for the individual was achieved by growing the tumor in the lab and hen trying known, different, and new drug theraphies. In the end, a new and different drug was determined to be the best.

    I plan to write both the researchers and the oncologist I saw at Mayo, Rochester, MN, to see if I can get them to use the tumors from my lungs tat I exect to ave removed in December as a starting point.

    Thanks for he comments back and I will keep you nformed.

    Ken

    obrienfam5
    Participant

    Gavin and others: I recently read an article in the USA Today which was a summary of a JAMA article regarding a new method for growing cancer cells in the laboratory. The method was discussed with regard to developing a drug treatment for a recurring non-cancerous tumor that was very rare and caused the involved individual to have to undergo over 340 surgeries over the past 20 plus years of his 24 year old life. The work to grow cancer cells in the lab and then use the small tumors as a means to identify effective treatment regimes was being done at Georgetown University in Washington, D. C.

    Given the strong similarity of this none responsive tumor to the behavior of CC to chemo or radiation, is anyone aware of or would it be beneficial to start a campaign to grow CC in the lab as a means to significantly escalate the speed by which an effective treatment could be developed?

    I had a large fist sized tumor and half of my liver removed 18 months ago, experienced a single mestastes of the cancer to my left lung 9 months after my initial surgery and had that 8 mm nodule removed, and now am waiting to have three additional nodules of the same size removed from my lungs. As I may have lots of lung to give now, and would love to believe that these will be the last nodules ever, I would even better like to have a true solution to end the cancer in my body without having to experience the shooting in the dark process of current chemo therapies which appear to have a near zero long term success rate.

    Thanks

    Ken

    in reply to: Younger people with CC! #61850
    obrienfam5
    Participant

    I am 53 with diagnosis and surgery at 52 for a very large intrahepatic mass in the right lobe. The tumor find was totally serendipitous as I had no symtoms at all but had the CT scan for a totally different reason. Removed the tumor and did not have any chemo or rad post surgery. At the time of surgery, no indications of any other tumors. At 6 months, CT scan id’d small, 5 mm, nodule in lower lobe of left lung. Followup CT scan at 8 months indicated that the nodule had grown to 8 mm. Wedge resection surgery removed the nodule and confirmed same cancer as intrahepatic cholangiocarinoma previously removed from liver with right lobectomy. Just complete two post lung surgery CTs, at 3 and 6 months post ung surgery, and both were completely clean. Planning to have another CT in 3 months and then move to 6 month CTs.

    in reply to: Good Scan #53914
    obrienfam5
    Participant

    Congrats

    Ken

    in reply to: Can’t worry about the time #50190
    obrienfam5
    Participant

    My thanks to each of you for your possible thoughts and reminding me of who is truly in charge.

    Ken

    in reply to: Trying to make sense of it all #53644
    obrienfam5
    Participant

    Chicago, il

    in reply to: Trying to make sense of it all #53645
    obrienfam5
    Participant

    Margaret and Marion

    Its great to know that there are others with knowledge and experience to talk with as my wife and I traverse this challenge.

    Margaret, my prayers and thoughts are with you and Tom. I pray that you and Tom have many, many great days together.

    Marion, can you give me a perspective on those hospitals or medical groups that have the most experience treating intra hepatic CC. I read a lot of recent research regarding the chemo therapy and some more recent info regarding means by which to make it more effective.

    My next exam is December 1 and I want to be prepared to make good decisions.

    Ken

    in reply to: Trying to make sense of it all #53641
    obrienfam5
    Participant

    Thank you very much for the additional insight and thoughts.

    My prayers are with you.

    Ken

    in reply to: Trying to make sense of it all #53639
    obrienfam5
    Participant

    Thank you both for the replies and the welcome. I appreciate the comments about the “chronic”desease and the second opinions. I guess that is somewhat here I am at the current time.

    I was quite disheartened to read all of the literature and the relative bleak picture it often painted. I am not ready to just call it quits. I am also very interested to hear of the second and third resections as possible options should the cancer recur. This was not something that my surgeon seemed to be very positive on. Also, it is interesting to hear of the chemo and radiation adjuvant treatments, especially all that I have read with regard to the apparent non-sensitivity if the cancer to these approaches. Then again, I just read a very interesting article regarding potential changes in the manner of approaching chemo so as to increase the sensitivity of the cancer to the chemicals and to preclude the cells from turning in on themselves as a means to preclude being impacted by the chemo.

    I am trying to discern if getting another review and assessment from say Mayo would be the right thing to do or if waiting on my next CT and then going forward would be best. In either case it is very good to hear others positive ongoing efforts and results.

    Thanks

    Ken

    in reply to: Recurrence rate #51332
    obrienfam5
    Participant

    Good morning all. I am a 53 yr old male 7 months post resection of a large 7×11 cm intrahepatic tumor in the right lobe. My surgeon was able to remove it with good margins however did not take any lymph nodes. He did not recommend either chemo or radiation. Had first followup CT and all looked well with the liver thought one small spot on left lung that we are not sure if it is an issue or not. Plan to re-CT in 2 months. have been reading a lot on prognosis and treatment with little clear conclusions. Lots of literature seems to focus on hilar vice intraheptic and data does not appear to differentiate well between those cases involving younger versus older patients. Also data regarding chemo and radiation seems inconsistent. Very glad to read this entire post. A great psychological lift in a sea of what otherwise appeared to be very bleak news. :-)

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