Michaela
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Hello Mary,
Hope you are well! Many thanks for your kind message as always. My mum indeed feels better, despite the fat that she still has an inflammation her body took the chemo very well, almost no side effects for the moment – obviously we know this can change in minutes.. but still remaining hopeful! She has now her third cycle and soon they should perform some examinations and scans to fin out what impact has the chemo had so far.
It is great to hear that there are really cases that underwent the surgery after taking chemo even if they were initially told the tumor is unresectable. Our oncologist told us as soon as she has the scans she will be the first one to consult it with the surgeon and the committee of surgeons, oncologist and gastrologists. As well there are some clinical trials available in Spain – immunotherapy + genomic therapy (dont know a lot about this, she just told us it is a targeted therapy but there is not a big chance of having this mutation). They told us my mum will be tested if she is a suitable candidate after she takes the chemotherapy (that this is a condition of both trials)
We are trying to remain positive and hope for good news however it is very hard, my mum is not the same as she was before, she is very depressed and cant cope with the disease. To be honest me neither… but I am trying to keep her up and keep telling that it is not over and she has to live the life not just survive. And that I a sure there is a possible way of treating this, the medicine keeps evolving and I just cant accept the fact that it is not curable. But you know how it is, when she opens the websites telling all the statistics and facts about this disease she loses all hope… This discussion board gave me hope and I can see a “light in the dark tunnel”.
Thank you I will read the story from vtkb right after.
Kindest
Michaela
Hello Ayhan,
Very sorry to hear your story. I am in a very similar situation, my mum was diagnosed in April/May 2020 – the worst part was the information that it is unresectable. She has had a serious long lasting inflammation in her liver – hence for a long time could not undertake any treatment. The inflammation never was never really gone, but got much better and controlled hence we took the risk and now she is having her third cycle of chemo. Exactly as you said – I am not trying to find out how possible it is she can reach the point and be resectable however I would appreciate it if anybody who experienced this would give us a hope. Is there anybody who was initially told that the tumor is unresectable and after taking chemo it shrunk and became resectable? This is my only hope + of course some minor possibilities of taking other treatments such as immuno/genetic after finishing all the chemo cycles. I am trying to persuade myself that there is still hope of surgery so then I can support my mommy and persuade her as well.
I wish you good luck Ayhan and hope you share any news with us. I feel you, for me this is the hardest part of my 25-year long life. But the only thing we can do is to believe and hope cause this is the only way we can continue to LIVE and not just SURVIVE.
Kindest
Michaela
Dear Mary,
thank you very much for all the important information you gave me in only two messages. I will check it all and for sure we will ask about the molecular testing again.
I was also wondering if there is anybody who was told the tumor is not resecable at the moment, was given the Chemo and after that the surgery was possible? The doctor was honest with us and told us the possibility is very small but I believe everybody is an individual and also the chemo has a different impact so I still try to believe we could possibly reach that point. Any similar experience shared here would be appreciated.Thank you again.
Dear Mary,
thank you very much for your kind message. Regarding the genetic testing – our doctor mentioned it to us but she said first the chemo needs to be given and then they can do the tests.. do you please know if this is something they do automatically or do we need to request it additionally?
My mum is treated in Spain and we have been very lucky cause the health care here is really amazing and our oncologist has experience exactly in the field of bile duct cancer, moreover she is a reasercher as well in this topic. Fortunately the cancer is only in her bile ducts now, they did not confirm the metastasis. Is this a better sign?
I keep telling my mum the stories from this discussion and encouraging her everyday. I am glad I found this foundation and appreciate a lot to be part of it.thank you once again, take a great care!
michaela
Hello everybody,
Thank you very much for approving my application to become a part of this community.
My name is Michaela, 25years old, from Slovakia, living currently in Spain and unfortunately the story with cholangiocarcinoma began for us (my mum) this year in February/March. My mum is 53 years old, full of live and the best person in this world for me. In february she got only one of the symptoms – jaundice. We were afraid she got hepatitis, that time however we did not know how happy we would be if it was true.. all the examinations, placing the stent, months in hospitals, neverending story until the final diagnosis came around 2 months ago – Klatskin tumor IV not resecable, max one year of life..moreover she almost died from sepsis caused by huge inflammation + abscesses of the liver which is btw still present.. hence she was not able to get any of the treatments.. now she is still on antibiotics, the inflammation is much better however still not gone.. please, has anybody had the same/similar experience when the inflammation even after some months of antibiotics, months in a hospital is still present? They gave her first chemoterapy this monday but warned us it can have fatal consequences.. but she got a choice – either waits but then maybe no cure at all or she takes a risk, starts chemo and if her body takes it well maybe it will open the door for some possible other treatments, trials, or maybe but really only MAYBE surgery … i cant describe how proud of her I am that she was so brave and wants to fight.. so this is my story very briefly.. the reason I applied to be part of this community is that I feel really desperate I think I dont have to explain it to all of you, cause I am sure I am not the only one.. I love her so much she means a world to me. And I would do anything to help her and that she is here for many more years. I would like to know if any of you have/had similar experience and maybe can give us more hope that there is still a chance to not only prolong her life but a chance of having our life back again amd overcome this horrible disease? To be honest I spent around 3 evenings reading the stories here and I have to say it gave me so much hope and energy that I simply wanted to be part of this discussion and gain even more of it. Thank you.
Hello everybody,
Thank you very much for approving my application to become a part of this community.
My name is Michaela, 25years old, from Slovakia, living currently in Spain and unfortunately the story with cholangiocarcinoma began for us (my mum) this year in February/March. My mum is 53 years old, full of live and the best person in this world for me. In february she got only one of the symptoms – jaundice. We were afraid she got hepatitis, that time however we did not know how happy we would be if it was true.. all the examinations, placing the stent, months in hospitals, neverending story until the final diagnosis came around 2 months ago – Klatskin tumor IV not resecable, max one year of life..moreover she almost died from sepsis caused by huge inflammation + abscesses of the liver which is btw still present.. hence she was not able to get any of the treatments.. now she is still on antibiotics, the inflammation is much better however still not gone.. please, has anybody had the same/similar experience when the inflammation even after some months of antibiotics, months in a hospital is still present? They gave her first chemoterapy this monday but warned us it can have fatal consequences.. but she got a choice – either waits but then maybe no cure at all or she takes a risk, starts chemo and if her body takes it well maybe it will open the door for some possible other treatments, trials, or maybe but really only MAYBE surgery … i cant describe how proud of her I am that she was so brave and wants to fight.. so this is my story very briefly.. the reason I applied to be part of this community is that I feel really desperate I think I dont have to explain it to all of you, cause I am sure I am not the only one.. I love her so much she means a world to me. And I would do anything to help her and that she is here for many more years. I would like to know if any of you have/had similar experience and maybe can give us more hope that there is still a chance to not only prolong her life but a chance of having our life back again amd overcome this horrible disease? To be honest I spent around 3 evenings reading the stories here and I have to say it gave me so much hope and energy that I simply wanted to be part of this discussion and gain even more of it. Thank you.
