June 20, 2015 at 9:25 am #88777
ALso wanted to say a big thank you to you Melinda Bachini for sharing your story,
You are an inspiration to us all. I only hope that the UK will offer something like this in the future. My sister has finally had a MDT review so at least she is being noticed now which will strengthen her case for more treatments/clinical trials in the future if needed.June 20, 2015 at 9:12 am #88776
Thanks Marion, Catherine and Gavin. Catherine I have been following your posts as there are some similarities and so thank you for responding as it has given me such hope. The one thing the UK doesn’t seem to do is blood work? Is this something that is mainly carried out in the US? Should I be asking for this?
We just seem to go by the scans. My sister is in a good place right now although she doesnt want to raise her hopes too much and is hoping that the scans in August will be able to offer more clarity especially the MRI.
I watched the video of Melinda Bachini’s journey which was so inspiring and have forwarded it on to my sis. I have no idea as a caregiver what my sister is going through and I do know that I have to be sensitive to her needs and wants but she is happy for me to continually search and gather as much important information as I can to help beat this cancer so. This is why this site is invaluable and am so grateful for the quick responses from you. Thank you xJune 19, 2015 at 6:10 pm #88775gavinModerator
This is excellent news about your sister, thanks so much for sharing this with us all! Your sister did indeed respond well to the chemo and news such as this will give hope to so many people as well, thank you for this.
Glad to hear as well that SIRT has not been ruled out as a future treatment option for your sister should she need it but right now I would be focusing on the present great news that you all got. My fingers are crossed for the good news to continue with the MRI in August and yes, everyone is indeed unique and the stats are just that, numbers!
GavinJune 18, 2015 at 10:37 pm #88774middlesister1Moderator
So happy to hear the wonderful news!
Although through a different path, my Mom is at a similar point. She had radiation and chemo which killed all cancer that could be visible on the CT and PET scans. She has been treatment free since November, but will be having another scan and blood work in Aug. Her doctor used term remission, and said we will have to wait and see. Her original prognosis was 6-12 months (in Oct 2013). We are doing our best to treasure the great place we’re at and the time we have been given.
Thank you for sharing another example of how statistics do not cover all and Best wishes for good reports in August.
CatherineJune 18, 2015 at 7:21 pm #88773marionsModerator
Mizzey…..wonderful and much welcome news. We love to see such excellent results to treatment.
I would like to chime in on what I have learned in regards to non-visible cancer i.e. surgical margins with cancerous tissue.
This is the way I understand it: due to the invasive nature of the tumor often times it is not possible to remove all cancerous tissue, as it may be encroaching on vital organs or blood vessels. Note: the liver is highly vascular.) Positive margins generally require additional treatments i.e. chemotherapy or radiation if deemed appropriate by the experts.
Scans help identify the response to treatment.
A complete response corresponds to disappearance of all targeted lesions (tumors).
Partial Response (at least a 30% decrease) of the tumor(s) is identified.
Progressive disease showing at least a 20% increase of the visible tumor or an additional lesion may be visible.
Stable Disease fits neither of the above mentioned criteria i.e. complete response, partial response or progression of disease.
Scans still have limitations, but at present, it is the best we have.
I hope you can make sense of it, but the fact that your sister had a resection eliminating the obvious tumor lends for good reason to celebrate.
Hoping for others to chime in and share their experiences with you.
MarionJune 18, 2015 at 5:17 pm #11406
I just wanted to share the good news we have for my sister who has ICC. She had a resection back in August last year but unfortunately they could not get clear margins so was put on GEM/CIS for 6 cycles . She was then told in December that the MRI showed lots of microscopic spots in her liver meaning that she is no longer looking at a cure. The news hit us hard as we were relying on the resection to get it all. However she did respond well to the chemo which had shrunk the spots which was an excellent outcome.
Her last CAT scan in May showed no visible cancer although they do want to do an MRI to review this further. We saw her oncologist today and they are really pleased that there has been no growth. Although a little confused as the Oncologist said there was cancer but not growing at the moment??
I wanted to say a Big Thank you to all of you on this site who have supported my sisters journey. I have found out so much information and with the help of AMMF (thanks Gavin) I have found out about SIRT and pushed for this . As a result they have had a MDT meeting and as there are no visible signs of cancer at this stage they are not able to do this but will consider this as an option in the future.
Her next MRI is in August so will know more. However for now she is in a great place compared to being told in Dec that there was nothing more they could do with an approx 1 year survival. Just goes to show the statistics are not always right and everyone is unique. I just hope and pray that the cancer remains dormant.
Has anyone else gone through a similar story where they have had a resection but did not get clear margins? If so would love to hear from you. I know she is not out of the woods yet but it does look like there is more hope and most importantly more time to continue beating this disease.
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