Italian CC in search of hope!
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- This topic has 14 replies, 7 voices, and was last updated 12 years, 9 months ago by pcl1029.
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January 22, 2012 at 4:52 pm #50413pcl1029Member
Hi,
Hilar CCA metastatsized to the liver ,microwave RFA can be one of the treatment choice.
In the States, radioembolization may be an option to consider first
.God bless.January 22, 2012 at 7:42 am #50412marionsModeratorFederika…good luck with the upcoming treatment. May the tumors shrink away.
All my best wishes,
MarionJanuary 19, 2012 at 3:25 pm #50411lainySpectatorDear Fede, welcome back! It is always good to have options and another game plan to try. May I ask what the Doctor meant by “be quiet”? I had never heard of Microwave except to cook with. Please keep your hope up as we need lots and lots of hope and we really need to be strong! Best of luck and please keep us posted.
January 19, 2012 at 2:37 pm #50410jim-wildeMemberFede, this is a long process, and there will be some good news and some not so good along the way. Try to not get too discouraged by the bad and not too up with the good news. It sounds like your mom is getting excellent care.
Good luck on the journey!
January 19, 2012 at 11:41 am #50409federicaMemberHello! Do you remember me? After 8 gemox rounds my mom improved her situation, the 6 Liver injuries became 4 smaller and the lynphonode was smaller too. She continued with gemox another four rounds and this monday the rmi has shown this situation: the lymphonode is desappeared (good news), but the 4 tumors are bigger than the last time….how is it possible? The same drug improve a situation and worsens another….so, on monday we are going to Padua and the Next step will be a treatment with microwave…we trust this doctor who told us to be quiet, he is outstanding in his field….
We fight and pray…i don’t want Delude myself, but i want to feel positive!May 28, 2011 at 12:32 am #50408marionsModeratorFede…good luck with the upcoming other opinion. And, thank you so very much for sharing the link of the Italian Center with us. It will be of benefit to others from your country. Please, keep us posted about the outcome of the visit.
All my best wishes,
MarionMay 27, 2011 at 3:16 pm #50407federicaMemberThank you Jukka for your reply and I wish you the best! Mom has started Gemox (the first round) and so far so good! Of course, like you said we hope that it will work! Also next week she is going to Padua, where there is a center of excellence for liver and bile ducts to get another opinion on her case
For Europeans I put the link although is an italian sitehttp://www.fegatochirurgia.com/
Bye, FedeMay 23, 2011 at 10:43 am #50406jukkaMemberFederica,
I’m having GEMOX and do not have so many side effects, mostly littlle fever for couplle of days just right after the infusion and some neuropathia during the first week, it occurrs after touching something cold like Coke can etc.
For the results so far, I not able to tell any news as I have had so far just two rounds and will have two more before having the next MRI.
I trust that it will work as planned.
Greetings from cold and rainy Finland
Jukka
May 20, 2011 at 5:46 pm #50405marionsModeratorFrederica…..Alternative medicine does not require clinical trials in order to establish the effectiveness of the treatments. For example, I gave my husband mistletoe injections (under doctor’s orders) simply because I felt it might be of benefit to him. Did it help? No one knows. But he wanted it and he was entitled to receive it.
Different organs in the body have different functions, and the bile duct sort of transports all the toxic garbage out of the liver and into the stool, and so you would expect those cells to be pretty resistant to toxins.
I am not a physician therefore; everything mentioned by me should be discussed with the treating doctor.
Others also have much information and I am hoping for others to chime in and to share their thoughts with us.
Additionally, you might want to enter the GEMOX in the google search function, on our top bar. Several discussions will appear.
All my best wishes,
MarionMay 20, 2011 at 2:32 pm #50404federicaMemberThank you Marions, we also started to give mom a melatonin and a syrup of aloe & myrra. She alredi took for 1 month potassium ascorbate….I believe in alternative treataments in addition to traditional therapies…could all these things to fight the growth or reduce the metastasis? Any experience? And what about GEMOX g1 and g2?
Regards
FedericaMay 19, 2011 at 6:39 pm #50403marionsModeratorfrederica….this is a difficult disease to overcome however, no one knows the outcome at this time. Surgery is not considered to be useless rather, it allows for the possibility of a cure. Often times the cancer returns and, often times it can be held back. The metastasis may respond to treatment may it be, radiotherapy or chemotherapy. Only your Mom’s physician will be able to determine the next step to take.
Hang in there. Many questions still are unanswered.
All my best wishes,
MarionMay 19, 2011 at 11:08 am #50402federicaMemberThanks for the answers! Today the oncologist told her that she ‘ll come to start the chemo next week. I think with gemox. We don’t read yet the MRI result but I think that there are 6 met in the liver….A friend of my mother has just call me cryng and saying that mom has few time of life, it’s impossible to fight the desease, all therapy are useless, vain…Also the surgery was useless….I was schocked, because I know that it’s a bad desease, but I ask all of you: is she right?
Do you have some experiences about metastasis in the liver after surgery?
I feel lost…..May 17, 2011 at 5:53 pm #50401ronidinkesMemberhttp://pathology2.jhu.edu/liver/geschwind.cfm
he offers radiation ablation and many other options. please check him out.
May 16, 2011 at 3:53 pm #50400pcl1029MemberHi,
Do not worry,as far as I know,Italy is in the forefront of treating and researching in the cholangiocarcinoma. Try to check out the web sites of the Fatebenefratelli hospital in Milan or the medical oncology dept.,A.O. San Carlo, in Potenza or the oncology unit at Azienda Ospedaliera Giovanni Paolo II Sciacca at Palermo Italy. All of them had done research on CC.You are the first one that I encountered with a Precise diagnosis stage(T3,N1,M0) and you also indicate what type of CC.(Hilar CC);This helps me a lot in trying to find good information and answer for the problem for you.
According to
ESMO(European society of medical Oncology) guidelines;
Options included PDT (with chemo if a large mass is visible radiographically) ,palliative chemotherapy alone or concurant chemoradiotherapy. chemotherapy .
NCCN(the National Comprehensive Cancer Network) suggested the use of 5FU-based chemoradiotherapy with conventional fractionation radiation therapy (EBRT).Conformal treatment planning is preferred if available.For recurrent CC, EBRT, brachytherpy,
stereotactic radiotherapy(SBRT),PDT(photodynamic therapy) and systemic chemo.
PDT shows good results for ductal CC;Chemoembolization with RFA show comparative good results for spots in the liver smaller than 3-4cm .(as compare to liver re-resection).
So,do not worry too much,there are still a lot of treatment options for your mom compared just 5 years ago;and Italy is a good place to start for CC treatment.You are in good hands in Italy .
I hope the info. helps.
God bless.May 16, 2011 at 2:12 pm #5152federicaMemberHi, I’m Italian from Rome, and sorry for my english..
Thanks to Lainy who suggested me to post here!I discovered this intresting site becaus of my Mom’s desease. (she is only 58 years old) Hilar CC resected after 9 hours of surgery in september. The classification of CC was T3, N1, M0. It was aggressive enough! The resection went well and my mom has come back home after almost 2 months in the hospital. Today after 7 months without terapy the MR has shown 2 or 3 little lesion in the liver and a linpho node growth near the resection margin. Biliar ducts are not compromised but it’s necessary a teraphy: loco regional chemo…but we are waiting for the oncologic visit next friday….I don’t know what can I hope..I read more succesfull cases here but I see all difficult…I’m very afraid, I’ll give birth to my 2nd son the next month and I don’t feel well because of this situation. Thank for this site and for your experiences!
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