alicia
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Deat Anne,
I lost your phone number, I just wanted to write that my mother passed away on Monday evening. She got worse and passed away within 3 days. It was a huge schock, but at least she didn’t suffer. The chemo just never worked. She didn’t even finish one cycle.
Thank you for all your support. You have been very generous with sharing information and experiences that you have from your husband. And above all you have shown great warmth. I wish both of you the very best. With you by his side, your husband will fight this.
Jag skickar er många många kramar!
AlicaHi Anne,
I found this study, which takes patients also in Norway. It’s about Keytruda, that I saw was discussed in another topic, in case you haven’t seen it. Maybe of interest for you and your husband after the study in Denmark (which I hope will be sucessful and there will be no need for participation in other studies!)
//Alica
Thanks for this explanation Anne!!
Actually, the oncologist don’t give any of the information that you have posted or linked to. At least the oncologist in my mother’s hospital, since they don’t offer this, i just think they believe it’s not relevant to give this information. Also, I think they just don’t have time. Usually we get 15 min meetings. Only the first time it was 45 min. Without you and your posts, I would never have understood this.
My mother’s main problem is lack of strength. She is now admitted into the hospital for a few days again to recover…so we’ll see how it goes.
I hope your husband is coping well!
//AlicaThank you so much Anne!!!
I sent an e-mail to Iulia at EMEA.concierge@lifetech.com.
My mother is really taking hard the gemcitabin/cisplatin even though she only had three therapies, so I hope there is something else for her.
Many hugs,
AlicaHi Anne,
I sent an e-mail to Ulrik Lassen about a week ago asking about whether any of his studies are open for new patients,, but no reply yet,
Also, I contacted Fisher on the phone. They gave me an e-mail, europeservice@thermofisher.com.
They asked me to specify in the e-mail what type of service I needed. The options she gave me on the phone were very technical/Medical, so I could not really understand what the difference is.
She also thought it’s for a study or project, and after some explanation she realised it’s for only one patient.She told me that after I write more about what service I need they will then try to put me in contact with one of the service providers.
I think I will write them that it’s a single patient tumour that we need to be DNA-tested against all cancers? I’m not sure how to specify this, did you write any type of ” service order”?
About the information in the link, no, this is not something that the hospital gave us. In general, the doctors that we have spoken to have given us very limited information about the cancer itself and treatments. They only give information after we ask questions. We are happy with the care in general, but we get very little information.
//Alica
Dear Anne,
thank you for this very valuable information!!
I have asked in Sweden my mother’s oncologist to do DNA-testing and she said that the question has been asked before by other patients, but she said that “the older professors” said “we don’t do that here”. It’s very strange and I will try to investigate more on why they don’t do this, or maybe it’s only in my mother’s hospital.Please keep us updated on how your husband is doing!
My mother (69 years) was diagnosed in April 2015, with Klatskin’s tumour. She underwent a liver resection (about 75 % of the liver was resected + bile ducst) in Karolinska hospital. They are very good in liver surgery.
She was cancer-free for about 8 months, and then they found out she has a tumour near the liver (which they deem unresectable ).So now she has chemo, gemc/cisplatin.
They didn’t give her chemo after surgery, but I have read the most recent recommendations where it says that doctors should consider to give chemo after surgey, for preventive reasons.In Sweden, we have national cancer-programs, which are national recommendations for a type of cancer in order to make care equal in the country.
The program on cholangocarcionoma is here (only in Swedish)Thank you again for all information about DNA-testing!
Take care!
/AlicaDear Anne!
thank you so much for contacting me. Very kind of you!!!
I will definately look into the information that you have given me and contact the doctors in Denmark to see if they could include my mother.
I truly hope that the study in Denmark will help your husband!
Many hugs
AlicaDear Anne,
I have read all your posts and am very interested in what type of treatment your husband is recieving at the moment?
I live in Sweden (Stockholm) and I am looking for possible treatments or clinical trials for my mother, also in neighbouring countries like Norway or Denmark.
Did you get hold of pembrolizumab for your husband?
And was it possible for your husband to have his tumour DNA-tested?Here in Stockholm they have only offered us Gem/Cis as treatment and nothing else.
Also, I hope that your husband’s treatment is working and wish you all the best.
//Alicia
