middlesister1
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Kris,
Good wishes coming you way that leftovers are what they are.
Take care of yourself as well,
Catherine
Fred,
Successful surgery is so wonderful to hear! Wishes for his speedy recovery as well.Take acre,
CatherineDear Anne,
Welcome and thank you for sharing! I am so happy that your husband is feeling better and is getting his appetite back. Having his pain lessen must also be such a relief for you.
We are very excited and can’t wait to hear how his scans look in another 6 weeks!
Take care,
CatherineHi,
Not sure if this will help; Mom was diagnosed 18 months ago and although we were not aware of it at the time, we have been told by multiple doctors that when they do the biopsy, they automatically keep a specimen of the tumor. We brought up testing again and the ONC said that as long as there was enough specimen saved in 2013, they could use it for the testing.
Good luck,
Catherine
Dear Aiste,
Welcome to out group. My mother was diagnosed at 74 years young, and I know it is devastating to hear, and even more scary when you learn about CC. Fortunately, 18 months later and she is feeling great even though she couldn’t have surgery. It is so wonderful that your Dad’s was found early and that he can have surgery. I wish the best for you and your family.
We will be thinking of you on Monday, please let us know how everything goes.
Best wishes,
CatherineHi Elaine,
We so enjoy hearing great progress reports! Thank you for sharing – we are all excited for you and looking forward to more great reports.
Take care,
CatherineDear Matt,
Thank you for sharing the information about the Neulasta. I am so happy that you were able to take the family vacation. It looks beautiful. Have a wonderful time and safe travels.
Catherine
Aana,
We did see some shrinkage on the first scan (about 4 weeks in), but more on the one 3 months later And with my mother’s tumor (only one), it was never a round mass,but instead very misshapen so that on one report they had a hard time with actual dimensions. There was also a point where it had not shrunk much, but some of what they were measuring was dead tumor. Even now, there is an approx 2 x 3 cm area of dead tumor tissue (necrotic). We also had areas in the earlier results where the doctor said some of what they were seeing could be inflammation. I guess it wasn’t until they brought up the results and moved it around showing different glimpses and angles of Mom’s tumor on the screen that I realized what a mess it was and that dependent on the person reading the results, they would easily report different “measurements”.
The last round, Mom was extremely fatigued for at least 6 weeks, but pain wasn’t very bad for that long (besides adhesion pain which seems to be getting worse from 2013 surgery).
We only had problems with eating when she was on chemo and then she would like egg salad, mashed potatoes, jello- or whatever sounded appealing we would get. Many here mention carnation instant breakfast and other supplements.
I hope your Mom starts feeling better soon.
Catherine
Hi,
My mother has had great results with the Y90 (you can see my recent post under good news).
She first had 3 cycles of Gem/CIS in and then her first Y90 in Feb 2014. Although it worked well and had a nice treatment free break for 6 months, we decided to do it again with the hope of killing the whole tumor and the left lobe of the liver rather than just shrinking it.
For the second Y90, they put her on xeloda two weeks ahead, one week off, and then two weeks after. They said that the chemo makes the tumor absorb even more of the radiation. We also felt good in case there was anything that had started to spread but was too small to show on the CT.
I’m sorry I don’t know about the gemzar- we haven’t tried that yet. At the appointment yesterday, they decided against maintenance chemo since based on what can show in CT and PET, she has no viable cancer showing. When did you Mom have the Y90? We were told that it continues to work for a few months afterwards.
Best of luck,
CatherineYIPPEE!!!!
CT results today; the SIRT continues to work for Mom. Her scan showed no change, Still no mets and tumor still appears dead. We even heard the word remission from her IR. We met with ONC and IR, and they both agree that she should enjoy treatment free life and come back in 4 months for another scan.
Catherine
Dear Dai,
Welcome to our group. Please don’t second guess yourself on trying the surgery. My mother also had an unsuccessful surgery, but with CC it does give a chance for a cure, so most think it’s worth trying. I think the trial mentioned here may not be accepting more CC patients, but there are other clinical trials and treatment options.
We were devastated when Mom’s surgery didn’t work (Nov 2103), but she is still feeling great today. You will see other good news stories here.
If you get an opportunity, you might want to copy your post under introductions. Hopefully there will be others who can chime in and may have further suggestions.
Also, on the homepage is a link with suggestions on how to proceed after diagnosis.
http://cholangiocarcinoma.org/newly-dx/
I hope your Dad has a quick recovery from the surgery; you’re right that that is the first priority.
Take care,
CatherineFor some ca19 does not help as an indicator. Mom has been between 42 an d 47 since DX. Also, some have warned here on the board that levels may rise when treatment is working since more of the cancerous cells are being sloughed off into the blood from the tumor.
Dear Karen,
My company should be arriving any minute, but wanted to give a quick welcome to out group. There is hope. Mom should be here soon, and it is 6 months later than she was told she be around for.
We are here for you-
Catherine
Dear Anna,
Welcome to our our family. My mother was diagnosed in Oct 2013 and had hoped to have surgery, but once they opened her up, they saw it wouldn’t be possible to remove the tumor. This journey is a lot of highs and lows. Some doctors are jerk faces, but the majority of doctors and nurses we have met have been wonderful.
Congratulations on the wedding; I’m sure you mother treasured being there with you. We’re fortunate that after chemo and two Y90 treatments, Mom is doing well and we continue to appreciate this time- I wish the same for your family. As Lainy mentioned, they should do all possible to control your Mom’s pain.
Please continue to keep in touch and let us know how your mother is doing.
Catherine
