August 20, 2015 at 7:20 pm #88792
Went to Oxford today to see oncologist who was talking about an option for Kim to do a clinical trial
A trial looking at oxaliplatin and 5FU for advanced biliary tract cancers (ABC-06)
I also discussed the possibility of sirt and they are going to review again but because of ascites and her resection she might not be eligible. Without treatment a prognosis was given of about 6 months and they cant guarantee whether she will get the chemo option on the trial. Can anyone else shed some light on the trial proposed? Is this something that has been offered in the US? Kim is Stage 4 now and her liver has about 7 grape sizes nodules/tumours? . She also has lymph node involvement around the abdomen and ascites.
Bitter sweet day as her daughter had a GCSE results today which were fantastic.
Love to hear of anyone in a similar situation or been through these options themselves xAugust 19, 2015 at 8:01 pm #88791
I know that you are in bits right now Mizzey, we unfortunately all know what that feels like and can so feel your pain. Yes please try and stay as positive as you can and your sister will need you there with her throughout everything. And know as well that we will always be here for you too.
GavinAugust 18, 2015 at 10:05 pm #88790
Thanks Gavin in bits right now but gotta stay positive and have spent the last few hours going through other journeys on this amazing site which give hope x Feeling blessed to be part of such a supporting caring groupAugust 18, 2015 at 8:34 pm #88789
I am very sorry indeed to hear the news you have about your sister. I know how hard this will have hit you both and I so wish that I could say something that would help right now. I am glad to hear that she has an appointment to see about a trial and I do believe as well that you have made the right decision in supporting your sister no matter what she decides to do about all of this.
I so hope that your sister will get some good news at this meeting and please let us know what is discussed if you can. And please know as well that we are all here for you.
GavinAugust 18, 2015 at 7:07 pm #88788
Thank you all for you kind words. I totally agree that it my sisters decision and we will do what we can to support her. Just heard today that she has an appointment in Oxford this Thursday to discuss clinical trial options. Her view is she will go and find out more information and I have said to her we will support her in whatever decision she makes.August 18, 2015 at 3:36 pm #88787
HI! Sally so good to see you but keep wishing we didn’t have to keep meeting this way. Just wanted to butt in here and say good wishes to your Sister who is fighting with such strength, dignity and grace! She is a role model for others as well. Looking for better scan reports this next time! HUGS!August 18, 2015 at 3:30 pm #88786sallypaMember
hi mizzey, I do agree that you should let your sister choose the best path for her treatment. you can tell her what you think but ultimately it is up to her. my sister has been dealing with this disease for 5 years now. she has been thru 3 surgeries, different chemos and radiation. we thought things were going good but we just got her latest test results and the cancer continues to spread. it is a frightening thing to go from good reports to difficult ones almost overnight. we are looking into clinical trials now as my sister wants to continue the fight. we support her decisions as we move thru and offer advice but not to the point of pressuring her. we continue to pray for a cure and hope for better treatments. that is the reason she continues to fight. she holds out hope that the researchers will find a cure. my advice would be to enjoy everyday. when my sister hasn’t been doing treatments we have gone places together and just spent time together. we recently went to visit our other sister in Sweden and had a wonderful time. hang in there and just be there to listen to your sister and enjoy each others company. that will be a big help to her. she is blessed to have you in her corner.August 17, 2015 at 11:54 pm #88785marionsModerator
Mizzey…….I am so sorry to hear of the latest developments. My heart goes out to all.
I realize it won’t cure your aching heart, but it might help to understand what indeed it means to have “stable” disease.
Tumor measurements follow a criteria for evaluation, In your sister’s case, stable disease was identified; because the tumor did not decrease by 30%, but also did not increase by 20%. (These measurements reference to smallest tumor at onset of disease.)
Additionally, scans have limitation however; at this time, it is the best we have. I have learned that the plate of scans measures 1cm in thickness, hence anything smaller is not identifiable. Therefore; it is possible to have disease progression not visible on scans and this in turn confirms the fact the the surgeons eyes allow for the most accurate way of disease identification.
Has the physician discussed molecular profiling in where tissue is analyzed for molecular aberrations and possible treatment based on those findings?
Certainly it would not hurt to investigate a clinical trial. As Lainy mentioned, ultimately it will be your sister’s decision to make, but her decision must be based on education and clinically sound information.
MarionAugust 17, 2015 at 9:37 pm #88784
Dear Mizzy, I am so very sorry to read about Kim. This CC is the biggest Monster there ever was. Most of us are strong believers that a patient has the right to decide what they prefer to do. This means that everyone needs to support their wishes and do the best they can to keep a happy face on and enjoy their time together. We were not born with expiration dates stamped on the bottom of our feet so we really never know when our time has come.
How about having a family meeting and listen to Kim and what she feels. Honestly the more you can talk openly about everything the more it helps everyone. I read and re read what she posted in her Blog and it sounds to me like she has accepted what ever will be. If she has then it is up to the rest of you to support her wishes. She sounds very stable and accepting of what may come. I feel this is her gift to all of you.
Have the Doctors suggested anything else? Hang in and hang on as You never know how strong you are until “strong” is the only choice you have!August 17, 2015 at 8:25 pm #88783
Kim had a scan in August and just got results a couple of days ago. The cancer has spread in both left and right lobes and in one lymph gland. It’s hard to believe that within 3 months the cancer has spread so quickly when only last month we were looking at a stable condition. The next stage is to look at what clinical trials are available that can help. Shocked at how quickly this cancer grows x what happens now? Just how quick is this cancer. She has ICC and how can one minute it be completely stable and then the within 3 months able to spread so quickly. Reaching out to see who else has been in this situation and what treatments have helped at this particular stage which is secondaries. How fast does it grow and what happens if she doesnt select chemo? Deep within me I know she wont give up but it is a year exactly that she was diagnosed and recently wrote the following blog:-
A year ago today I was told I had a 9 cm tumour in my liver, however I strongly believed I would be okay. 2 weeks later I had major surgery in which 4/5 of my liver was removed. Nothing could have ever prepared me for that operation, emotionally or physically. But at this awful time, I was totally blown away by the kindness and support of my wonderful family and fantastic friends. I was going to get through this!!
Then in December came the news that made my blood run cold! The cancer had returned. After six months of chemo there were signs that the tumours had shrunk so not totally given up hope yet.
Here we are year on and 2 days ago I was told my cancer had grown and spread and there’s not much more to be done. I’ve been so lucky to have such great support and love. I hope you all reading this never take a person, a day, a moment in time for granted. A lot could change in a year and the thing that stands out the most is the love, kindness and generosity I have been shown.
I know I am loved and for that I am grateful xx
Please help me as not only a loving sister but patient carer what I can do to help? I am at a loss right now and need some help and guidance xx
I want to fight and keep pushing her to take on the clinical trial but am I doing the right thing? I cant imagine our lives without her and that is such a self egotistic view but what do i do?
xJuly 2, 2015 at 1:51 pm #88782
Daisy, sorry for the return of the monster but sounds like Mom has a great team working for her. I love hearing the fighting news! One day we will totally win over this CC with brave people like your Mom! Go, Mom, Go!July 2, 2015 at 4:15 am #88781daisyParticipant
My mother had a resection late July in 2013. The 7cm tumor was removed but 3 nodes were involved. She had 6months of gemniside and was in remission till this past June ….then mom’s cancer re- appeared and 2 nodes were (hot) dr’s terms and a tumor. she just underwent 3 months of gem/cim and the nodes are now clear YEAH:) but the tumor did not shrink at all. She will now have radiation to blast the tumor and then perhaps she will be back in remission (if such a thing exists) but no complaints because she was given 6 months to live almost exactly 2 years ago… And it ain’t even close to over yet!!!! Hope this information helps.June 21, 2015 at 6:00 pm #88780
I’m pretty certain as well that here in the UK someone who is going through treatments of whatever type, chemo, radiation etc will have bloods taken quite a lot throughout that treatment. My dad had blood taken quite a bit before his PDT treatment but he did not do chemo so can’t share anything specific as to that and bloods etc. But I am sure that if your sister was to start a treatmnet, SIRT etc then they would be doing bloods before and after.
And just let me say that you are so doing the right thing here in seeking as many answers and info as possible for your sister and I know how much that she will appreciate all of that. Never be afraid to ask questions Michelle!
My best to you and your sister,
GavinJune 20, 2015 at 7:27 pm #88779iowagirlMember
During chemo, I had blood checked for basic stuff….liver function, red blood cells, hemoglobin, kidney function, white blood cells, bilirubin, and a few others that are in standard blood profiles.
They watch some of this for toxicity that might signal a need to stop the chemo, but also for white blood cells, to make sure you are able to fight infections….or need treatment for that…or to sit out a week or two from treatment.
I did sit out one week toward the end of the chemo, because my hemoglobin dropped so low and the white blood cells were also very low. That one week worked wonders even though the last chemo I received knocked me back again. It was a good decision to make, IMO, to sit out that week and let my body recouperate a little more.
Before each scan I have, they do a basic blood profile, checking all the same items, to see if there is any change…better or worse. I never did have anything out of normal before diagnosis….liver function, billirubin ….everything was normal. Since my CA 19-9 test was also normal prior to diagnosis, they don’t even bother with it nor any of the other tests they did prior to diagnosis, since all were normal and didn’t indicate the cancer was present. They have told me that there is no point in repeating those tests as they aren’t likely to show anything if the cancer returns, either.
Julie TJune 20, 2015 at 11:28 am #88778middlesister1Moderator
Gavin can probably answer for what is normal in the UK, but I think it is very standard here to have the blood checked, specially during treatments. Before each chemo cycle and radiation, they looked at readings which told how her liver function was doing (and many other tests). I have heard of patients having to delay receiving treatments if the blood work showed problems, but fortunately we did not run into that.
They still take the blood before each scan. One other thing they test for is the CA19 which for some people serves as a tumor marker and can rise and fall greatly based on how the cancer is going. With Mom, we have not seen the very high readings, but instead it has ranged from 42-59 since diagnosis (some do see readings in the 1000s).
- You must be logged in to reply to this topic.