March 26, 2018 at 2:57 am #96771middlesister1Moderator
The only “symptom” was a rise in her CA-19. We never thought it was a good indicator for her since it always stayed high 30s to low 50s, but with the recurrence it was up to 71. Although she didn’t have surgery, we thought we had beat the odds. Once thing we did find, was I would push for a PET scan at least once a year. Mom had a lone growth that was lose to the bowel and very hard to differentiate from it. They also at first with CT missed where it had come back at the original site. She had her CA-19 tested again the surgery to remove the abdominal growth and it was down to 51. Since then, she had 15 proton radiation treatments. We go back April 10 for another scan/blood work and will see how it worked. Mom’s only complaint with the radiation was the fatigue.
CatherineMarch 23, 2018 at 11:02 pm #96769spokanemomSpectator
I hope that your mother is doing well and that her treatment is proceeding smoothly. Could you possibly share what symptoms (if any) she experienced before her recurrence was diagnosed?
VictoriaNovember 25, 2017 at 12:57 am #96139debnorcalModerator
thank you for posting your mom’s update. Of course I was sorry to read of recurrence, but I am hopeful that the new treatment plan will allow your mom many more years of good quality of life. As you point out, treatments have changed over the last few years. We have many members whose CC is successfully managed as a chronic condition, and I hope that will continue to apply for your mom.
wishing her successful treatment and quick recovery so that she can enjoy Christmas with her family.
debbieNovember 23, 2017 at 6:55 am #96127molly_maySpectator
I get so much strength and hope from you and your Mom, for as Gavin says, you are both fighters, which is what we all need to be. Its awesome that she is here to see your daughter get her PhD, and I wish you both the best on this new journey down what I hope will be a less bumpy road.
Sunshine and hugs,
MollyNovember 22, 2017 at 11:34 am #96124gavinModerator
Thanks for the update on how your mum is doing and what a fighter she is! Yes stable is good but I can understand her frustration about hearing “stable” and not NED. But hopefully in a few days or so she will get over the news and come out with the boxing gloves on ready to kick some CC butt once again! Sounds like the treatment plan is all in place now and you know I will be keeping my fingers crossed for you all.
Yes I agree with you that things do seem a bit quieter around here since we made the change over on the boards and the site and it seems to have coincided with some long standing members standing down from the boards for various reasons. You are so right in that they all added so much heart and knowledge and their legacy here with the work, help and support that they all gave will never ever be forgotten. I have a ton of memories of an awful lot of people that put so much into getting the CCF from where it was to where it is today. As I said, no one will ever be forgotten here.
The search forum function will always throw up their postings, insight and knowledge for many many people for years to come. I just still need to get used to telling people that it is now on the right hand side of the page instead of the top of the page! Change takes time to get used to sometimes does it not! Ha!!
I am not American as you all know, but at this time of the year I always like to wish all of you, my American family a very Happy Thanksgiving indeed and hope that you can all enjoy it as best as you can with your families. I know that this time of the year can be so hard for so many and indeed I lost my own Dad in December. But I do hope you can all enjoy it as best as you can. Hope you and your family have a good one Catherine.
Hugs to you and everyone else as well,
GavinNovember 22, 2017 at 9:56 am #96119middlesister1Moderator
I seems like the board has not been as active since we went over to the new format. And, we have lost some key members who added to so much heart and knowledge. For those of you who are newer, many of the founding members and key contributors were people who lost loved ones to CC a decade ago and wanted to make a difference- which they did. I also see some great FB groups, but I still do and will continue to come back here for the community, and also for the contributions of so many that have left a legacy and a wealth of knowledge and experiences. The search function ( now on the right side- easier to find on computer instead of phone) is invaluable. Mom will be going through proton radiation, so I will be searching to see others’ experiences.
So- the Mom update- after 3 years of NED, she has recurrent growth in original site and one tumor in abdominal wall. She finished up 3 cycles gem/cis 2 weeks ago. She was upset yesterday that unlike 4 years back, tumors did not shrink- I and the ONC had to tell her that stable and not new growth is wonderful. Next step- on/about Dec. 20, they will surgically remove the abdominal tumor and send it for foundation one testing. They will also while in, place a barrier between liver timor and other organs. Then, after recovery from surgery, she will have 3 weeks of high-dose proton radiation to locally target the liver/bile duct recurrence. After all is finished, she will need an additional surgery to remove the barrier.
We were hoping for laperscopic surgery, but not possible with the barrier placement for the radiation. Good news is that if the tumor board came to a consensus on this treatment plan, they must agree that putting her through the surgeries is worthwhile. If all goes well, she’ll be released from hospital Christmas Eve or Day, so we may have to adjust our typical menu.
However, before surgery, she will be flying out with us to IN to see her granddaughter get her PhD on Dec 16- it was a dream we didn’t think possible in 2013 when she was DX. We’re hoping that going through these next few months will again give us years of quality life. So very different even since 2103 on the treatment options and prognosis. We’re going in the right direction, but still so much further to go and I wish it would happen more quickly for all those afflicted with this lousy disease.
I wish all here, your families and loved ones a Happy Thanksgiving. Please message me at any time – with all going on I don’t log in every day, but will see email.
Love and hugs,
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