mariane wrote:Hi!
I was diagnosed with rectal cancer with metastases to the liver (10+) in June 2015.
I am originally from Poland. With the extensive spread of my cancer I was offered only palliative therapy. I found online Dr. Kemeny from MSKCC (Memorial Sloan Kettering) in New York who is successfully treating liver mets. My husband sent my scans from Poland to MSKCC . First attempt was unsuccessful. The person who picked up the phone refused him. After a few days he tried again and a nurse ( whom I will be forever grateful) showed my scans to Dr. Kemeny. She scheduled my appointment a week later. I was lucky to respond well to chemo ( systemic and administered directly to the liver via hepatic pump) and I have been NED since my last surgery in May 2016.
The problem for you might be an insurance. However, I would still try. Dr. Kemeny is seeing patients from all over the world.
Hepatic pump is also offered in France but I don't have too much info about it. There was a patient from France a few years ago who thought about pursuing it. I also know a lady from Germany whose mom was seen by Dr. Kemeny. She is also a European crc researcher and is very up to date with all the info. I will contact her if you are willing to .
Good luck!
juliej wrote:kspoon17 wrote:Have been receiving treatment in Lyon, France where they're planning this MSS Immunotherapy combo. My onc' mentioned this one yesterday saying that this may be an option for me. Will let you guys know.
Kilian, yes, please let us know if you get in the trial! Also, if you decide to go for the HAI pump first and have any questions about it, feel free to send me a private message. Like you, I was young when I was diagnosed with Stage IV CRC and I honestly feel like the pump saved my life. I had it implanted at Memorial Sloan Kettering in NYC.
AlexandraZ wrote:Wow, thank you all for your responses! The HAI pump is very interesting, but are you eligible for it if you have extra-hepatic spread? My boyfriend has lung mets too, and I thought they only accepted patients with isolated hepatic metastasis. Anyone know?
Jesper will have his 12th FOLFIRI (with Panitumumab) this week, and then we are planning on taking a break. Half a year of uninterrupted full-dose chemo seems like enough for now!
Does anyone have experience with liver AND lung mets?
juliej wrote:AlexandraZ wrote:Wow, thank you all for your responses! The HAI pump is very interesting, but are you eligible for it if you have extra-hepatic spread? My boyfriend has lung mets too, and I thought they only accepted patients with isolated hepatic metastasis. Anyone know?
Jesper will have his 12th FOLFIRI (with Panitumumab) this week, and then we are planning on taking a break. Half a year of uninterrupted full-dose chemo seems like enough for now!
Does anyone have experience with liver AND lung mets?
Hi, Alexandra!
I was diagnosed with liver mets (in all lobes) AND lung mets (in both lungs). I had 14 months of chemo and then sought a second opinion at MSKCC in NYC. They resected my liver, removed my primary tumor, and implanted an HAI pump. Three months later I had double-lung surgery for my lung mets. So it's definitely possible to get the pump with extra-hepatic spread. I'm NED now and truth-be-told, I would not be here now writing you if I hadn't went to MSK and Dr. Kemeny in particular. I owe them my life. No one else would even consider me for surgery because of the sheer amount and spread of my tumors.
You said Jesper had a 50% reduction in only 8 rounds - that's a very good response! I'm sure part of the reason I was seen at MSKCC was because I too had such a good initial response to chemo. They also favor healthy patients, ideally without comorbidities, and it sounds like he fits that profile too. I think it would be worth your time to get a consultation at MSK if you can while you're in the US.
Has Jesper had genetic tests done? Genetic tests should include KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH. Additionally, testing for MSI or MRI status (MLH1, MSH2, MSH6, PMS2) lends information for the option to use pembrolizumab (Keytruda), a PD-1 inhibitor, and part of a new set of exciting immunotherapy drugs that are coming out right now so make sure he gets it too.
Hope this helps!
Juliej
mariane wrote:Hi!
I was diagnosed with rectal cancer with metastases to the liver (10+) in June 2015.
I am originally from Poland. With the extensive spread of my cancer I was offered only palliative therapy. I found online Dr. Kemeny from MSKCC (Memorial Sloan Kettering) in New York who is successfully treating liver mets. My husband sent my scans from Poland to MSKCC . First attempt was unsuccessful. The person who picked up the phone refused him. After a few days he tried again and a nurse ( whom I will be forever grateful) showed my scans to Dr. Kemeny. She scheduled my appointment a week later. I was lucky to respond well to chemo ( systemic and administered directly to the liver via hepatic pump) and I have been NED since my last surgery in May 2016.
The problem for you might be an insurance. However, I would still try. Dr. Kemeny is seeing patients from all over the world.
Hepatic pump is also offered in France but I don't have too much info about it. There was a patient from France a few years ago who thought about pursuing it. I also know a lady from Germany whose mom was seen by Dr. Kemeny. She is also a European crc researcher and is very up to date with all the info. I will contact her if you are willing to .
Good luck!
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