middlesister1
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Dear Sammi,
Although we are very fortunate that Mom is still doing well, shortly after diagnosis, although not the same as a letter, I bought bracelets for us 3 daughter and Mom with charms that are inscribed with “The love between a mother and a daughter is forever”. She took it as a token of love and not a sign that we were giving up. I think a letter written in thanks and love to a parent could only be a good thing, and such a beautiful idea to do for a parent for Christmas, even if they are healthy.
Take care,
Catherine
Tom.
Like Julie, I have read your posts and the love and dedication come through the pages. I know whatever time you and Ben have together will continue to be special and I hope peaceful and pain free.
Catherine
Dear Kirsty,
I am very sorry to hear about Neil. I was so impressed by your positivie attitude and how you looked into every possible treatment plan. Know that you were the you were Super Wife as well as Super Mum.
You and your little ones will be in my thoughts and prayers.
Catherine
Teresa,
I’m glad he was able to have the treatment and will be waiting to hear great scan results in 4 weeks.
A few links that may be interesting- but not the exatct one I referred to in an earlier post. I’ll check my work computer later today. Too often I spend lunch time following links and must not have sent it home. Please know that my ability to understand these in almost non-existant, so they may not be applicable, but I still keep reading so I can ask the doctors if it could be an approach. Also, even if I have no understanding of what I’m reading, I love when I see good 3 and 5-year survial rates in non-resectable CC patients.
First is on radiation lobectomy (I liked the survival rates for HCC)
http://link.springer.com/article/10.1245/s10434-009-0454-0And since you were trying to look at all options, below links show encouraging use of RFA, and of RFA after SIRT.
http://www.ncbi.nlm.nih.gov/pubmed/24637151
http://www.ncbi.nlm.nih.gov/pubmed/19269763
Catherine
I lit a candle for Percy from MD- I wonder how many other places /people he touched and will continue to in the future. My thought was that this should be not only for loved ones ( although one is lit too honoring my mother), but for those living or passed who have touched our lives through this board. So yes, I guess it is loved ones, since there is a lot of love and hugs here , but please think more broadly beyond “family” and donate if you can ($10 helps and will be matched).
Gavin,
What you do is so much more than a small part. When we had an ONC who was saying wait and see, I sent her a couple of journal articles from links you have posted to show her that there may not be large studies published yet, but there is hope.
I was a bit disappointed that my candle showed up in MD rather than UK, but we’ll just have to ask Marion for next year to give us that option. Or, maybe the goal should be to see how many places around the globe someone like Percy touched and how many places we can see a candle lit in his memory.
I guess we can throw that challenge out there- if there’s someone on this board who has touched your life (can be living still and honored rather than memorialized – Duke comes to mind, but many others) light a candle – they even have a donation as low as $10 that will be matched by other donors.
Catherine
Hi- mom didn’t have much abdominal pain with mappping, and once the first couple of days had passed after Y90, mostly just fatigue for a few weeks (did have nausea, but that’s the norm for Mom and any meds). However, this second Y 90 round they gave a higher dose. To help with pain andd inflammation, they sent her home with a 5-day steroid that we had to renew since she still had the pain (but pain was higher than stomach area). Also, they had her take a 30-day prevacid.
Good news- Mom had the first Y90 in Feb and then was treatment-free till Nov 19. Traveled and enjoyed life. And, this past treatment was our call to be agressive- still showing no progression. I hope your symptoms get better quickly and the treatments are successful.
Take care,
CatherineDear Gavin,
I am constantly so thankful that you, and others on this board, have responsed to losing loved ones by helping others, Very small token of appreciation, but I lit a candle for your Dad so there is one (or maybe many) burning on this side of the pond for him as well. I’m sure he is proud of what you are doing for all of us and your Mum.
Catherine
Mandy,
I am very sorry to hear of your loss,. You and your children will be in my thoughts and prayers.
Catherine
Teresa,
Mom’s CA 19-9 has been pretty steady since diagnosis in Oct 2013, so sorry I can’t help. However, I want to thank you for taking the time to post the summary of your Dad’s treatments to date. Like you, I have spent much time reading posts and trying to find the common threads of those who are doing well and which treatments seem to have least side effects. With how rare CC is and how some of the treatments have only been tried in the past few years, it seems like the published research may miss some of the protocols that are working to extend length and quality of life.
Best to you as well,
Catherine
DMiller,
Mom had the SIRT (internal spheres) , it’s done as an outpatient. Two appointments- one is a test run when they map the way they will go and then a week or two later they do the procedure. If this is what they suggest for you, please let me know if you have any questions.
Good luck Tuesday,
Catherine
Rod,
I’m sorry I don’t have a suggestion (we have only done Gem/Cis and SIRT), but wanted to tell you how much I admire your journey so far and will be rooting for you to be around to see your son grow up. I’m hoping the clinical trial that may be ahead of you will make you another CC poster child like Melinda B.
Good luck,
Catherine
Christopher,
I’m sorry they couldn’t do the resection, but happy that you responded so well to chemo. Just a thought, but since my mother’s tumor was in an inoperable place, they are doing SIRT a second time with the goal of not only killing the tumor, but killing off the left lobe of the liver and letting the right take over. I found some limited studies that when this happened (typically not on purpose), there were long survival times- getting the benefit of surgery but the lobe is removed through radiation.
I guess my question is have they considered any other targeted treatments?
Catherine
