willow
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Wow! Thank you for sharing this incredible story about your mom.
Continued healthy blessings,
WillowDear Percy,
Praying for your recovery from the RFA side effects. This includes return if your appetite and your spirit.
Love,
WillowLisa,
Thats great news about your bloodwork and the fact you’re healthy enough to have those hernias repaired. I had no idea you had that side effect from previous surgery (or that it could happen). No, more surgery doesn’t sound like fun but I can picture you as a very active woman and nothing should hold you back from living life to its fullest. In fact, I can picture you tearing it up on the dance floor at a small venue with a nice rhythm and blues band
Let us know when the surgery is scheduled.
Willow
PS you should be getting that book ‘Survival Lessons’ any day as I mailed it Sat. I hope you enjoy it as much as my sisters and I did.Wonderful to hear this, Kris! Its a good time to pause and celebrate as Mark prepares for the next phase of treatment (chemo radiation). His Dr sounds aggressive so that’s good. Wondering if you can find a charity (Lije Rinald McDonald House but fir adults) so you can stay in the city during the week for Marks radiation tx?
Thanks for sharing Marks journey, your knowledge as a halth care provider and helping pave the way for others to use the new patient registry that will be open soon by the CC foundation. This is a critical to give researchers and doctors a database to use. I’m Wondering if people can register under a pseudonym to keep med info private? I’ll ask…
Cheers,
WillowCongratulations, Porter, on your smooth recovery! So glad everything went well and you will be home soon. Healing thoughts and healthy blessings,
WillowCaroline,
Thanks for describing this process. I agree with Percy that it helps others greatly to hear about this trial and what it takes for your Mom to participate. All the best to your Mom.
WillowYes, you’re on the right track. Yes, go ahead with multiple opinions even if you’re proceeding with the SIR spheres. This would be to ask what next steps may be suggested (do other experts agree chemo embo should be next step?). How soon after sir rad would they start the chemo embo? Glad you got in board with interventional radiologist as soon as they said “non operable”. You never know, the tumor may shrink enough from these treatments to allow surgery.. It has happened to several on this board. Is it just one tumor?.. Really depends on individual case, whether mets are outside liver (like in nearest lymph nodes), how agressive the surgeon is and how confident they are of getting it all. This cancer has a high recurrence rate, so they don’t jump into surgery lightly. Do you mind sharing: What is your wife’s age and general health other than the CC? What were the symptoms that took her to Dr initially? Did she have any known risk factors such as PSC (primary Sclerosing Cholangitis) or other GI issues? Did she have a biopsy? Ask now, early on, about genetic testing of a sample of her biopsy if possible, to look for mutations and bio markers that may help her qualify for clinical trials down the road.
Sincere best wishes to your wife and my empathy to you for having to be here in the first place.
WillowI love Lainey’s description of you as a “light in a very dark tunnel”! Knowing how far you go back with Lainey, Marion and the others, I definitely feel honored to have met you in person (and shared a lovely meal!) in San Francisco at the GI ASCO. Your generous and open spirit and knowledge touches all. I hope that sharing your story is also helping your spirit as well.
That said, I’m really glad that you are so proactive and are seeking multiple opinions. Sounds like you found some doctors who are truly thinking “outside the box”. When will you have the RFA again?
XO
WillowI love Lainey’s description if you as a “light in a very dark tunnel”. Knowing how far you go back with the others on this board I definitely feel honored to have met you in person (and shared a lovely meal!) in San Francisco at the GI ASCO. Your generous and open spirit touches all and I hope that sharing your story is also helping you as well.
That said, I’m really glad that you are proactive and seeking multiple opinions. Sounds like you found some doctors who are truly thinking “outside the box”. When will you have the RFA again?
XO
Willow
