My mom’s diagnosis and UCSD
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Hi Beatriz,
I so appreciate your reply and advice. How long has your dad been receiving treatment? I would love to hear more about your experience at UCSD if you don’t mind sharing. I have heard such great things about Moores, but as you and others have shared, this is such a rare form of cancer that I want to make sure she is being treated by the most highly specialized medical team.
My email is Megan.orr8@gmail.com if you do feel comfortable sharing anything further.
You had mentioned that you were receiving treatment at UCSD as well. I will keep both you and your dad in my prayers.
Thank you so much for your kindness. I can’t tell you how much I appreciate it.Sincerely,
MeganMegan….please don’t hesitate from asking questions. This is the place to do so.
At one point “maximum benefit” will occur with your Mom’s current treatment. In either case, ineffective or maximum benefit, the molecular testing results of Foundation One’s analyses will will identify DNA alterations (faults) for which a targeted drug may be available or a clinical research study is conducted. Or, perhaps some type of radiation treatment may be applicable. In any case, you are ahead of the game and that is very good.It is likely that UCSD is the place you ultimately choose, but a second opinion is of enormous value.
The real value of this forum lays in the information passed on by patients and caregivers, hence I hope for others to chime in.
In the meantime, dear Megan, try to relax. Your Mom has been diagnosed, she began treatment and much, much more has yet to be determined.
Oh, and thanks for removing the links. I too have to do this occasionally for my postings as well.
Hang in there,
Hugs,
MarionThank you for your replies Marion and Lainy. I will definitely look into USC – we would like to have her in San Diego, but the best treatment is of course the most important factor.
From what our current oncologist has said, she will be receiving her current chemo regime until “it is not effective”. Does anyone know how long this time period usually is? And what happens when it stops being effective, or isn’t effective at all? What other options are available?
The biggest side effect from the chemo so far is constant muscle pain. Has anyone else experienced this?
I apologize for my many questions. This is all so new and terrifying.
Thank you so much for your help.And sorry about all of the extra posts! It kept giving me error messages, but I guess it was actually working. I think I got them deleted now
Dear Megan, welcome to our remarkable family and the best place to be for CC support. If you type a word in to our search engine at the top of the page posts will come up like that subject. You might want to type in Moores Cancer Center to see if anyone has posted about that Center.
Yes, It would certainly be easier if Mom was by her daughters both mentally as well as physically.
Hoping for the best outcome for Mom from her Chemo. We have had quite a few Stage IV patients who were able to bring the tumors down in size and then be able to receive surgery which is the ultimate goal. Below is a site you may find helpful and please keep us updated on Mom’s progress!http://cholangiocarcinoma.org/newly-dx/
Megan…no problem and it happens often that multiple postings appear. Would you please be so kind us the below links and delete?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15602http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15603
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15604
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15605
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15606
Don’t worry if it is problematic to do, we always have Gavin has backup to handle these sort of things.
Thanks a million,
Hugs
MarionMegan….welcome to our special group. Moving your mother close to you is a wonderful idea and I am happy to see that she is amicable to doing so.
I hope for others to come forward and share their experience with UCSD.
Additionally though, dear Megan, I would try to consult with a center treating a high volume of our patients and for Southern California that center would be USC.
Again, welcome, we are happy you found us and let’s see what other advice will come your way.Hugs,
MarionHello everyone,
My 62 year old mom was diagnosed in October with Stage 4 Cholangiocarcinoma. She was completely fine until she began to have acute GI symptoms and they thought she needed her gallbladder out. When they went in to remove it, they realized there was much more and she was transferred from the hospital in the Central Valley in CA to Stanford. The diagnosis was so shocking, and my family is doing our best to learn everything we can about this awful disease. When they did the biopsy, we had them take additional samples to send to FoundationOne for genetic testing and we are still waiting on those results. As of now, she just finished her first round of chemo (gym/cis) at Stanford, but we are hoping to have her move down to San Diego to be closer to me and my sisters.
We are exploring having her treatment at Moores Cancer Center at UCSD, and I was wondering if anyone had any experience with them? I would love to hear any information at all!
Thank you so much in advance for the help and support!Sincerely,
Megan
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