First post-Hallwang CT results

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  • Sundanceh
    Sundanceh Member Posts: 4,392

    Had paracentisis to remove

    Had paracentisis to remove the ascites fluid about 10 days ago, and they took off 1.7L (1/2 gallon) of fluid.  I think it is starting to come back though.  Had my PET scan today, and will post results as soon as I get them.  Right now, I am scheduled to start FOLFIRI + Avastin on July 16th, unless the PET shows significant necrosis of my tumors, at which point I might switch gears and go back to Germany for more treatment....  To be honest, I "feel" like I am getting worse (more fatigue than before, ascites build-up, etc...).  Not looking forward to FOLFIRI and potential side effects, and I'm concerned because they gave me irinotecan in the TACE procedure on the liver and it didn't seem to have any effect on the liver tumors.  One interesting thing is that my blood counts continue to get better (have always been good but even better now) and at my last treatment all of my liver enzymes were normal.  That is the first time all have been normal in over a year...

    On the bright side, I went with some friends to play golf this weekend at Arcadia Bluffs here in Michigan (#13 ramked public course in America) and played fantastic on the front nine with a 1 over par 37.  Struggled a bit coming home and shot 44 for a total of 81 for the 18.  Fatigue started to set in on that back nine...

    Tedd

    Good Luck, Tedd

    My 4th recurrence is definitely in the liver...highly suspected in the lungs...and there are indications in the lumbar region of the spine.

    It seems each recurrence gets progressively worse when it comes back.

    I met with a new oncologist today...he specializes in surgical liver oncology....we're leaning towards me doing TACE now, chemo unknown at this time as the plan is being discussed and with another test pending.

    I got a chance to talk with him about some of the Hallwang approach....hyperthermia and the DC vaccine etc. 

    It was interesting, because he said when they do the before and after scans....that the after always looks good, for sometimes up to 2-years.....and then, there is inevitably a recurrence...and he said that things tend to come back stronger and with multple mets. 

    His specialty is liver and he seems (to me) to be up to date on the varying protocols locally in the states, as well as abroad.  Didn't have enough time in the consult to discuss Removab, but from the gist of his conversation, I got the impression that things work for awile and they don't.

    Much like with all that we attempt to do...

    It was interesting just to be able to tap his opinion on this subject and get some feedback, as we were discussing a part of my case for the liver. And fortunately, TACE is available in the states at the hospital I would be receiving it at. 

    Folfiri can be a tough drug....since Irinotecan had no effect with TACE, I'm wondering if they feel the systemic delivery of the Irinotecan through IV will be more effective through this transmission route?

    Continued good luck with your plan!

  • tachilders
    tachilders Member Posts: 313
    Sundanceh said:

    Good Luck, Tedd

    My 4th recurrence is definitely in the liver...highly suspected in the lungs...and there are indications in the lumbar region of the spine.

    It seems each recurrence gets progressively worse when it comes back.

    I met with a new oncologist today...he specializes in surgical liver oncology....we're leaning towards me doing TACE now, chemo unknown at this time as the plan is being discussed and with another test pending.

    I got a chance to talk with him about some of the Hallwang approach....hyperthermia and the DC vaccine etc. 

    It was interesting, because he said when they do the before and after scans....that the after always looks good, for sometimes up to 2-years.....and then, there is inevitably a recurrence...and he said that things tend to come back stronger and with multple mets. 

    His specialty is liver and he seems (to me) to be up to date on the varying protocols locally in the states, as well as abroad.  Didn't have enough time in the consult to discuss Removab, but from the gist of his conversation, I got the impression that things work for awile and they don't.

    Much like with all that we attempt to do...

    It was interesting just to be able to tap his opinion on this subject and get some feedback, as we were discussing a part of my case for the liver. And fortunately, TACE is available in the states at the hospital I would be receiving it at. 

    Folfiri can be a tough drug....since Irinotecan had no effect with TACE, I'm wondering if they feel the systemic delivery of the Irinotecan through IV will be more effective through this transmission route?

    Continued good luck with your plan!

    My TACE procedure included

    My TACE procedure included mitomycin C, irinotecan and avastin delivered directly to the tumor via the arterial blood supply, which is how they do TACE.  Don't see how irinotecan systemically via IV would be any different, but we are trying it and will see what happens.  Quite frankly, I think it is in large part that "standard protocol" is if you do FOLFOX first, you then do FOLFIRI next.  The chemosensitivity testing they did on my circulating tumor cells indicated that irinotecan should work for me, at least until the MDR-1 gene starts kicking in and making my tumors resistant to it.  The chemosensitivity results for irinotecan were not quite as good as for oxalaplatin (70% response versus 80% response), but we will see how it goes...  Best of luck with your TACE procedure if you get it. 

    Tedd