VERO the high tech specialized radiation treatment option

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  • October 29, 2014 at 3:47 am #84393
    reacher
    Member

    We are in awe of the treatment my husband s getting at Scripps Proton Therapy Center in San Diego.
    He will be getting proton therapy over five weeks concurrently with chemo called Xeloda.
    I am documenting everything to share in Canada.
    My husband’s tumour was discussed at Tumour Board two days after our arrival with four disciplines of Doctors….radiation oncology, medical oncology, surgical and gastro intestinal.
    It was teleconferenced last week between Loma Linda, Johns Hopkins and Anderson.
    We are impressed with Dr. Giap and Dr. Sigal.
    The only hard part for us is we have no insurance since we are patients out of country.

    October 1, 2014 at 7:54 pm #84392
    supermum
    Member

    Lainy wouldn’t that be amazing!!! We so need a break!

    Gavin I feel so lucky having these as options close to the UK , my husband is 42 we have no choice but to throw everything at this.
    Xxx

    October 1, 2014 at 7:44 pm #84391
    lainy
    Spectator

    Dear Kirsty, yea!!!!!!!! You are truly Pioneers here seeking a new treatment! We are all anxious to hear what happens. Hoping for you to pave a new path here and wishing you both the ultimate best!

    October 1, 2014 at 7:40 pm #84390
    gavin
    Moderator

    Thanks for that Kirsty. Fingers are crossed or the 13th and remember to let us know all the details and how your husband gets on with that. That’s good as well that chemo was able to be done yesterday even at a reduced dose and let’s hope that the antibiotics do their do, fingers crossed as well for that!

    Cracking on with life again sounds like a real good plan to me!

    Hugs,

    Gavin

    October 1, 2014 at 7:25 pm #84389
    supermum
    Member

    Thanks guys!

    Treatment went ahead yesterday at a reduced dose and he is now on oral antibiotics for his infection, we never got to the bottom of what the cause was but his inflammatory markers and liver function are now on their way back down and he is home, well, and ready to crack on with life again.

    So the Vero consultation is in Belgium on the 13th and we have also sent his records to Milan as a back up and they emailed this evening saying that the team there will review his notes in the next few days then get back to us with a decision. I am praying we get the go ahead for this and I am so grateful to this site for all the brilliant aids I find here!

    Stayed tuned for my post regarding Foundation One, results are back but I don’t want to hijack this thread.

    Lots of love to all
    Kirsty.

    October 1, 2014 at 4:36 pm #84388
    marions
    Moderator

    Reacher….please take a look at the Cholangiocarcinoma Foundation Medical Advisory Board:
    http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/

    Hugs,
    Marion

    October 1, 2014 at 5:10 am #84387
    reacher
    Member

    Marion,
    Tell me more about the hipatabilary dept at Princess Margaret in Toronto.
    Names woukd be helpful.

    September 30, 2014 at 6:33 pm #84386
    gavin
    Moderator

    Thanks for that Supermum! Real happy that you have the app in Belgium for the vero and I so hope that it goes well! And of course, I hope that the chemo goes well also. My fingers are crossed for your husband and please let us know how everything goes.

    Glad to hear that you are feeling positive, especially so after such a stressful weekend for you both.

    My best to you and your husband,

    Gavin

    September 30, 2014 at 12:20 am #84385
    lainy
    Spectator

    Dear Kirsty, YEA!!!!!! for your appointment in Belgium re: Vero consult. Your positive attitude will do wonders for you both and carry you far. Just so you know we have had members here who had :pepper pots: and the chemo worked very well to put them into a better position for treatments. I can tell since your first post that your fright has turned in to a lot of fight and this is a good, good thing. You are handling your part of this terrible journey like a pro. Amazing what we learn about something we never heard of, yes? When is your appointment in Belgium? Glad hubby is feeling better after the bad weekend.

    September 30, 2014 at 12:07 am #84384
    marions
    Moderator

    supermom….absolutely, keep fighting. Great response to the current chemo regimen and tons of good wishes for all good things to continue. Good luck on the upcoming visit with in Belgium and please keep us in the loop.
    Thanks and hugs,
    Marion

    September 29, 2014 at 8:21 pm #84383
    supermum
    Member

    Well after a very stressful weekend I have a confirmed consultation In Belgium for vero!!!

    We have had a roller coaster weekend, my husband developed a fever Saturday thru Sunday and is in hospital on antibiotic IV, his platelets were low last week and we were unsure if we could do treatment this week but they are back into the 100’s and the temperature has gone, treatment was delayed today but going ahead tomorrow which will be day 1 cycle 2 Gem/cis. The Dr is concerned that the liver mets are causing all the problems so Straight after this cycle we are looking to do radio in the hope it will take the heat off the liver for cycle 3, I don’t have an exact number of liver tumours but the Dr described it as a pepper pot so the majority of radio treatments aren’t available to us right now. On the upside the tumour markers went down after only the 1st cycle!!!

    I feel really positive even after this little setback and I am still determined to fight for my Happy ever after!

    So excited about the Vero.
    Lots of love to all.

    September 29, 2014 at 4:13 am #84382
    marions
    Moderator

    Reacher….for second opinion you might might want to get in touch with the radiologist at Princess Margaret, Toronto. They have a robust Hepatobiliary Department.
    Hugs,
    Marion

    September 28, 2014 at 3:13 pm #84381
    reacher
    Member

    Discovered Scripps Proton Health Center in San Diego.
    Dr. Huan Giap is the radiation oncologist for proton therapy.

    Had a discussion with chief fund raiser with BCCA.
    VERO costs $6.5 million to establish
    Proton therapy cost $50 million to set up.

    Currently, Princess Margaret Hospital in Toronto is trying to obtain proton therapy.

    I am hoping my husband will be a candidate for proton therapy at Scripps.

    September 25, 2014 at 5:41 am #84380
    marions
    Moderator

    Reacher…..as far as I know the effectiveness of proton beam therapy compared to other types of radiation for the treatment of Cholangiocarcinoma is still being tested. We have not yet seen large scale studies however; this Phase II clinical research study is recruiting:
    http://clinicaltrials.gov/ct2/show/study/NCT00976898#contacts
    Hugs,
    Marion

    September 25, 2014 at 4:36 am #84379
    reacher
    Member

    Okay!
    So VERO may not be everyone.
    I sent in over 75 pages of medical records on my husband to the University of Florida proton institute.
    The pancreatic radiation oncologist, Dr. Charles Nichols said my husband is an ideal candidate for proton therapy radiation as opposed to VERO.
    The cost is crazy expensive, with 33 treatments over 6 weeks in Jacksonville at the University of Florida.
    Really big decisions to make regarding his health care.

    Has anyone heard of this institute, the oncologist and proton radiation therapy?
    Dr Google calls it the Rolls Royce of radiation.

    Feedback woukd be most appreciated!
    Reacher

    Vancouver has proton radiation at UBC called triumf but they do not treat bile duct cancer.

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