rain

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  • April 1, 2015 at 11:41 am in reply to: A bit about me #86537
    rain
    Member

    Hello Moose,

    I just wished to let you know that my father is curently battling CC and also lives in Melbourne.

    Please feel free to contact me with any questions etc you have.

    My greatest piece of advice is to get as many opinions as possibile.

    I am already very pleased that your medical team is offerring you adjuvant chemotherapy. When my dad had his Whipples operation in 2012 they did not offer chemotherapy as he had clear margins and also clear lymph nodes. I asked for a second opinion at the time and they also stated no need for chemotherapy. I wish I had found this board before as maybe I would have challenged the decision before (all medical articles I read stated no evidence for chemotheray so I thought was ok).

    I wish you all the best,
    Rain

    March 2, 2015 at 4:45 pm in reply to: Update on Dad & Next Steps #84493
    rain
    Member

    HI Apk,

    My father is also battling this disease in Melbourne.

    Just to let you know that his Oncologist has let us know of a phase I drug trial at the Austin and also Monash.

    https://clinicaltrials.gov/ct2/show/NCT01773018?term=hutchison+AND+met&rank=1

    This is a met inhibitor like the drug that Kris is on from this website.

    Mayvb you can also ask about this.

    Regarding SIRT. My father also did this in December and to be honest the results havent been completely positive; his outside liver disease has grown and am not 100% sure if it has made a positive impact to his liver disease yet (CT positive; PET less so).

    Feel free to ask any questions.

    Teresa

    March 2, 2015 at 4:26 pm in reply to: GREAT NEWS – MERCK DRUG (Keytruda) is WORKING!! #84676
    rain
    Member

    Thank you so much Colleen for updating everyone. It is so nice to see good news on this board and gives the people in difficult situtions the courage to continue our path.

    I wish you and your mum all the best

    Teresa

    January 12, 2015 at 10:21 am in reply to: inoperable, but clean scan at 15 months (now 39 months) #86178
    rain
    Member

    Excellent news Catherine!! Am so pleased for your mother. Quality of life is so important.
    My dad has his CT scan on 27th Jan after the SIRT on the 17th December. I am praying he has a good result.

    All the best,
    Teresa

    December 18, 2014 at 11:24 am in reply to: Summary of My dad’s case just in case useful for others #85892
    rain
    Member

    thanks Catherine for your reply.

    My dad had the SIRT on Wednesday. Naturally we have a 4 weeks wait to see if works or not.

    I am interested about the lobectomy that you describe. Could you send me the papers that you were able to dig up. It sounds very interesting and if Dad has a response to radiotherapy I believe it maybe a good option for him (naturally only if radiotherapy works).

    Teresa

    December 12, 2014 at 3:52 am in reply to: Update on Dad #85462
    rain
    Member

    Thanks so much Debbie for your advice.

    I must admit I have been very impressed by Dr kato-s office and also him personally. he was kind enough to ring me the other day (pity I was just about to change planes to go to Australia).

    he has impressed me so much that even though it will be expensive I believe if we (my dad specifically) decides to operate we will go to NYC and see him.

    I will post a summary of my dad in a differnet post just in case it helps other people

    Teresa

    December 9, 2014 at 7:46 am in reply to: Update on Dad #85459
    rain
    Member

    HI all,

    I am feeling quite lost and with an incredibile decision to make.

    Two Australian surgeons have reviewed my dad-s case and not sugested resection.

    However I have sent his scans to a well known Italian surgeon and also Dr Kato. Both have replied that they consider surgery as an option.

    I am not sure what to do as I am not sure if the surgery is “curative” as he has had lymph node disease in the past. It would be great to be able to speak to Dr Kato so I can ask my questions.

    any advice an thoughts?
    teresa

    November 13, 2014 at 8:03 pm in reply to: Three years, three resections #85245
    rain
    Member

    Hi Genevieve,

    My father has 2 liver lesions and I would like that he is seriously considered for surgery. I know that it is not intra hepatic carcinoma however am wondering whcih hospital your husband visits and whom is his surgical/oncology team?

    thanks
    Teresa

    June 27, 2014 at 10:02 pm in reply to: Hi Percy #81453
    rain
    Member

    All,
    I am sorry to all that I have been absent for a while. I would read posts regularly however if I had to be honest I needed a bit of a break ( I sometimes just need to read only the positive posts)

    Percy , I can only echo what everyone has already said. The strength you personally gave me when my father was diagnosed with metastatic disease was inspirational, all the more because you are also affected by it.

    I wish all the best for you and I will add you to my prayers.

    All the best
    Teresa

    April 8, 2014 at 9:10 pm in reply to: Hi friends #81370
    rain
    Member

    HI all,

    thanks for your responses. I feel like you have all become “old” friends.

    Unfortunately as feared he has disease progression as a liver lesion has grown… 8mm in 6 weeks. Seems like alot to me.

    However I have to give him credit he has already discussed with the Oncologist starting FOLFOX on Monday. Anyone have any experience with this regimen?

    I know it was hard on him however we had gotten used to GEM/cisplatin and Panitumuab and also the wonderful cinical trial nurse….. I hope our experience with FOLFOX is even better but am of course worried…

    Rain

    January 20, 2014 at 9:14 pm in reply to: How much more can she endure? #78630
    rain
    Member

    Dear Ilias,

    I am so sorry to hear about your mother. All my thoughts are with you

    Teresa

    July 11, 2013 at 8:27 pm in reply to: Decrease in CA 19-9 #71714
    rain
    Member

    Hi friends,

    Just a quick post to say Dad’s CA-19-9 was 18 yesterday!! CT San showed some shrinkage (a few mms but I will take that)

    All the best to everyone here

    Teresa

    July 11, 2013 at 7:27 pm in reply to: Please pray for Tiffany, she is getting a liver transplant. #73466
    rain
    Member

    Havent connected for a while and was SO HAPPY to see this news!!!

    All my best wishes for Tiffany and her Family

    Teresa

    June 27, 2013 at 8:31 pm in reply to: PET Scan and Blood work #72995
    rain
    Member

    Excellent news Lisa …. Am so happy for you and your family
    Teresa

    June 19, 2013 at 7:46 pm in reply to: Decrease in CA 19-9 #71708
    rain
    Member

    Hi friends,

    Just a quick post to give our board some good news.

    Dad has his port put in on Tuesday and after three cycles of Chemotherapy his CA 19-9 came back as 32 (normal under 38).

    I know this is good news and and for this I am grateful

    I am so grateful for this board,

    Teresa

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