September 5, 2017 at 12:28 am #95158mbachiniModerator
Such great news! So happy for the good results……breathe now, enjoy some time without worry. All my best to your husband!
Keeping you and your mom in my thoughts and prayers…..she has inspired so many!
MelindaSeptember 1, 2017 at 8:09 pm #95167gavinModerator
This is great news indeed, thanks loads for sharing it! Just made my night actually!! Fingers crossed for Tuesday now and let us know what the board say. The good life sounds good to me!!
GavinSeptember 1, 2017 at 6:39 pm #95169spokanemomParticipant
Such wonderful news!! And, I am so glad you didn’t have to wait days for the scan results.
I LOVE to hear your Mom’s amazing story. Thank you for sharing and keep us posted. Congrats to your daughter too!
VictoriaSeptember 1, 2017 at 1:00 am #95168
Thank you- Mom is looking at chemo, surgery (for abdominal met) , and undetermined treatment ( maybe nanoknife) for the original location. Tumor board is meeting next Tues so we will get their recommended treatment plan.
HOWEVER – NOTES TO ALL HERE— In Nov 2013, when Mom was not operable, they said 12 months and chemo could give us another 3. We have been living the good life of no treatment and just having occasional scans
Now, even with cancer coming back, surgeon, ONC, and IR are NOT giving the prognosis that all is lost. Even the surgeon told us last week that we gave her 3 years and we will do the same again.
When diagnosed in 2013, the dream ( not realistic then) was for Mom to see my daughter get her PhD . Graduation is 16 Dec 2017, and she will be there,
My love is with you all,
CatherineAugust 31, 2017 at 11:44 pm #95170
Thank you Catherine! I believe you’ve got some big appointments coming up for your mom, I will keep you all in my thoughts. Blessings, TillyAugust 31, 2017 at 10:51 pm #95171
Thank you. I greedily needed to see good news today. Also, LOVE the quick results.
My hugs and happiness are with you and your family,
CatherineAugust 31, 2017 at 10:27 pm #95172
Happy scan results!
Peter underwent the CT scan this morning and—thanks to the oncologist and the radiology team—we got the results about three hours later. Some of the technical terminology reads as follows: “No evidence for discrete residual or recurrent lesion… no evidence for metastatic disease to the chest.” The upshot, though, is in the oncologist’s subject heading of his e-mail to us (exactly as he wrote it): “CT result – GOOD NEWS.”
We are so happy… relieved to be able to inhale and exhale normally again… and extremely grateful. Thank you Melinda and Victoria for your kind words and encouragement ahead of the scan.
Also– sending out good thoughts for those of you being treated at MD Anderson with hopes that any treatment delays will be minimal or nonexistent. Blessings, TillyAugust 30, 2017 at 5:56 am #95173spokanemomParticipant
I am so glad that Patrick’s news is inspiring to you! He is actually feeling a little better today. Scananxiety is horrible! I will be sending good thoughts your way and hope that your husband proceeds smoothly on to your next phase of treatment.
VictoriaAugust 28, 2017 at 7:24 pm #95186mbachiniModerator
Sending good thoughts, lots of hugs and many prayers your way for great scan results! I am having scans done as we speak, results tomorrow……even after eight years of doing this, it never gets any easier. Darn scananxiety!!!
Keep us posted….
MelindaAugust 28, 2017 at 7:04 pm #95185
As a refresher: my husband has extra-hepatic and/or gallbladder CC, Whipple procedure in April, currently on the SWOG S0809 protocol (12 weeks of Gemzar & Xeloda, then 5-6 weeks Xeloda and radiation). He is just now finishing his final cycle of chemo.
Peter has handled the chemo portion of things really well. He’s had some big time fatigue this final cycle and moderate hand foot syndrome that has limited his activities. On the whole we are feeling very grateful for how this phase has gone.
But now we enter the Scananxiety phase. On Thursday morning he will have his first CT since his pre-chemo scan in June. Both of us are feeling very hopeful and very nervous. In a “normal” world no one would want to deal with five weeks of chemo/radiation but we don’t live in a “normal” world anymore. So we want the scan to be A-OK and, yes please, bring on the chemo radiation. I don’t have to tell anyone here that this stuff is crazy hard!
SpokaneMom’s post on her husband’s successful completion of chemo/radiation was great timing for me — so happy for you and your family! Thanks again to the community for giving me an outlet for my fears. It helps. Blessings, TillyJune 22, 2017 at 7:44 pm #95184marionsModerator
Happy to know you are takig advantage of the beautiful weather. Lainy used to remind that “live is for the living. Peter and you have gone through alot, enjoy.
BTW: I live in the San Francisco Bary area as well.
Wanted to mention that the cholangiocarcinoma hilar region is treated with surgery as well. It’s a combined liver and bile duct resection.
Here is an article explaining in detail:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1357124/
Hope you and Peter can get out this weekend as well.
MarionJune 22, 2017 at 5:44 pm #95183
Thanks again for all the welcome messages. It does seem like there are two main surgery tracks for those who are able to have surgery — liver resection for intrahepatic CCA and the Whipple for extra hepatic/distal CCA.
It is amazing how the little pleasures of life can seem huge post-diagnosis. Yesterday we went out to lunch at one of our favorite restaurants. I was so grateful that he had a good appetite going into his second week of chemo and we had a lovely time. So far handling chemo OK other than some hives that popped up on his knees. Blessings and best to all! TillyJune 22, 2017 at 12:42 am #95182
Thoughts and prayers are with you every day Julie (Iowa girl)- I do have to admit i kind of cringe on how creative you can be even with this crappy disease. With the nice weather forecast, we will order pizza and hang out on the deck this weekend. We will be celebrating Mom’s 77th bday- a milestone the doctor’s said we would not reach. And, it will be a Carvel Icecream cake
Love and hugs,
CatherineJune 21, 2017 at 3:23 am #95181iowagirlMember
Hi Tilly and Welcome. Thank you for outlining your husband’s diagnosis and treatment. You did an excellent job and many will come after you (unfortunately) who will benefit from your post. I was diagnosed in Feb of 2014, with intrahepatic CC and had a resection of my liver, so I am not familiar with your husband’s surgery very much, but I am aware of Whipples. Glad to hear that he recovered so well. I am currently NED…again as of last August, after having a second resection for a recurrence after about two years and another recurrence 7 months later (August). I’m currently falso fighting MDS (as a result of the adjuvant chemo….a rare side effect….but I am in remission from that, though we don’t know for how long…it will eventually fail). There have been many dark days since 2014….but I am enjoying my life as God gives it to me…..and celebrating my grandon’s 6th birthday this weekend. I use to be a cake decorator….so SI will be once again making him a special cake….this year…a tornado cake. LOL He LOVES weather stuff! Last year was the Saturn V rocket cake ….because he was into space related things and rocketry. There IS life after CC. I don’t know how long the MDS and CC are going to let me stay around., but I’m not going to miss a moment God gives. Hang in there.June 20, 2017 at 4:05 pm #95180debnorcalModerator
Hi Tilly, and welcome to our group. I am not very familiar with Distal CC (my husband had Hilar CC), but we also live in the Bay Area and initially had medical insurance through a large regional HMO that did not have much experience with Cholangiocarcinoma. We also consulted with UCSF, and ultimately changed health plans so that my husband could undergo a resection with them. That was two years ago, and the surgeon at UCSF saved my husband’s life! The entire team there is beyond outstanding- can’t endorse them enough.
We also were disheartened when we looked at five year survival rates for this disease. Through this board, we learned that you can’t assume that those statistics will apply to your individual case. Remaining positive and making the best decision based on the information/situation occurring at the moment has huge benefits- it allows the patient to get the best treatment available. Plus, increasingly, new discoveries and treatments are surfacing. Many of these are promising. We have many patients on this board that are living happy, productive lives with this disease as a chronic condition. A number are also living with NED!
I wish you didn’t need to be on this board, but am glad you found us. Please keep us posted on your husband’s progress, and of course, reach out for help whenever you need.
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