lulu07
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Peony….So happy to hear your husband is feeling better…..being a patient of Dr. Hirschfeld I know exactly how you feel…..he’s compassionate, caring and he has a pretty good sense of humor also….besides being a terrific Dr. Glad you found your way to him he is a special person…wishing only the best for you and your husband and will be praying for the same! Nancy
Hello to all….just wanted to update on what has been going on with my treatment…..I finished 5 cycles of chemo which consisted of Xeloda, Gemzar, Nexavar and Abraxane….not an easy combination for me I think the Abraxane is what I lost my hair from…thought it would be more devastating but they make some very nice scarfs,turbans and hats so that didn’t bother me much. Nexavar caused hand/foot syndrome which is not so nice…rock hard, red, very tender feet and hands…lots of lotion with urea for that which helped but then all the skin peels off…good news symptoms for me at least only lasted 3 to 4 days. My ocologist raised my dose of Abraxane from 125mg to 200mg after 2 1/2 cycles of that I had to ask for him to dial it down back to 125 which he did. I didn’t get out of bed for 6 days after infusion one week. Thats my chemo story…..Went for my CT scan yesterday at Mt Sinai…then I had my visit with my surgeon Dr. Schwartz to check on the 2 lesions that I had….well after reviewing my scan I guess it was good news the chemo kept the lesions stable they did not grow…I figured with how lousy I felt during this chemo cocktail it must be doing something right? I guess its true when the Oncs tell you that you don’t have to experience side effects for the chemo to be working. Dr. Schwartz said that the 2cm lesion did not have a good blood supply so he was not surprised at no growth….he then looked at me and I asked well what can I do now….he said that he would like to operate and remove the lesions…he feels he can get them both with clear margins…I was speechless so my husband chimed in and said oh we are definitely ondboard for that! I did ask about RFA and he explained that the lesions were to close to the hepatic artery and portal vein to risk that. Needless to say I’am feeling extremely blessed today. My surgery is scheduled for August 13th. Thank you to all for the positive thoughts,prayers and just being here…I do follow although I do not post that much. I’am getting a second chance at kicking this cancers butt and I’am going to do all in my power to make it happen! Of course having my family, friends,faith and all of you with me will make me that much stronger. Thank you all!
NancyPam
So so sorry to hear this news but Lauren is young and that is a big plus and she sounds like such a strong and positive person. I have just finished 5 cycles of Xeloda plus 3 other chemo meds…I can tell you I had no side effects from the Xeloda I did experience hand/foot syndrome but I’m not sure if it was from the the Xeloda or the Nexavar it is listed as side effects for both. I will tell you though that you will want to get out ahead of it…my feet and hands turned red…got rock hard on the soles then cracked and peeled it made it very painful to walk for a few days. I was sent from Nexavar a cream that contains Urea and socks that were all cotton and very padded. They both made me a little more comfortable. Slap that cream on every chance she gets it will help. Good news is the pain was usually gone in about 2-3 days and I was only left with the peeling. I hope this new chemo zaps those tumors and that in time Lauren will be able to have that resection! Praying for you and Lauren.
NancyHi Percy and Marion…thank you for your replies….after my scan on the 20th I have a list of questions to ask Dr Schwartz and the possibility of RFA is at the top of my list….I think I was just so shocked hearing I had a recurrence after 2 years that I just wanted to do something/anything pro-active….I have completed my cycles of chemo and am just waiting to have my scan so I’m praying and staying positive. I do fit all the criteria as of my last PET scan where as I have no other mets anywhere else even lymph nodes all arteries to liver are patent and CBD is wide open. Thanks again for your input I will let you know the good news!!! See staying positive!
NancyPeony
I received chemotherapy from Dr. Bruckner….I actually saw Dr. Hirschfield who is also wonderful after my resection in 2010. He was at NY Dowtown Hospital at the time I had 6 months of adjuvant chemo which I tolerated extremely well….practically no side effects at all I went 2 days in a row. Unfortunately they moved to the Bronx as I’m sure you are aware. i now have a recurrence of my CC with 2 mass lesions in my liver. I live in Phillipsburg NJ and when I did go for an appt with Dr Bruckner it took me 3 hours with GWB traffic…..not thinking I could handle that kind of traveling I was referred to a new oncologist in Morristown who I like very much. However the chemo regiment I’m on is very grueling and I’m experiencing most of the side efffects. I go for a rescan with my surgeon Dr Myron Schwartz July 20th..to see if they can be removed…which I pray they can…if not I have spoken with my family and if I need to receive more chemo I have decided I will go back to Dr. Bruckner and Dr. Hirschfeld….the low dose is really alot easier on the body and I for one don’t want to spend days in bed with side effects…Best of luck to you and your husband I will keep you in my prayers.
NancyChica…Woooo Hoooo and a woot woot for good measure! This is such wonderful news for a very wonderful person!
NancyEileen..After my resection in 2010 I was on 5-fu along with 4 other chemo meds…I received the 5-fu through an infusion pump over a 24 hour period. I did not have an side effects from any of those meds and I had a very good appetite which I think I can attribute to the steroids they would give me before treatment. I now have a recurrence after 2 years of clean scans. My tumor markers CA 19-9 CEA were never abnormal. I’m currently receivng Nexvar, Xeloda, Abraxane and Gemzar. I ‘am experiencing the hand/foot syndrome from the Nexavar and Xeloda combined. My oncologist did order an alpha-feta protein lab which was slightly elevated he seems to think this is the best tumor marker for CC. I wish you and your husband the best of luck in seeking treatment that will help with his nausea. As always praying for all affected by this disease.
NancyRoni and Percy….Thank you very much…it looks like I have a decision to make. I will call my surgeon and ask why this was not mentioned.
NancyPercy
Thank you very much for the information. This is a brief description of the lesion from my CT scan and then PET scan. CT showed mass lesion left hepatic lobe measuring 2.1 cm similar lesion along inferior aspect of the surgical margin measures 1.1 cm also concerning for malignancy. PET scan showed lesion in the inferior aspect of the liver which corresponds to a lesion seeen on recent CT with SUV maximum 5.0 versus 3.0 in the surrounding liver parenchyma suspicious for metastic disease. Impression on PET states a hypodense large lesion seen on recent CT consistent with recurrent cholangiocarcinoma, the small hypodense lesion seen adjacent to the cut surface of the liver on recent CT is not appreciated on this study. So I don’t know if I’m reading it wrong but to me it seems like the lesion look alot bigger on PET than CT….I don’t know why RFA was not mentioned I do know that my surgeon called my oncologist to discuss his protocol for chemotherapy and I will be having a CT in 3 months…these are all good questions you pose and I will certainly be asking them…I did have intrahepatic CC so again you raise a good point! None of my arteries or bile ducts have any kind of blockage and there is no lymphadenopathy anywhere…Thank God…how long after your first resection did you have the other? Thanks for all the information…I’m starting my first cycle of chemo tomorrow so I will update on the side effects etc..
@Kris…. I would love to meet with you anytime…praying that your surgery will be soon and a complete success….@Margaret….. Thanks so much for sharing your Toms experience with chemotherapy that is why this board is so unique. Its just the best!
NancyKris:
I did receive Gemzar before and after my resection and had no problems with that at all…I had my surgery at Mt Sinai hospital in NY…Dr Myron Schwart was surgeon I still see him every 4 months and that is where they picked up the recurrence…after my surgery he recommended Dr Howard Bruckner for my adjuvant chemo at that time he was at NY Downtown Hospital and I did have 6 months of chemo there…problem is he moved to the Bronx…past Yankee Stadium right by the NY Bontanical Gardens…I did have 1 visit there and it took me 3 hours…traffic at the GWB is always a beast….Dr Schwartz called an oncologist at Morristown Memorial Hospital…a Dr Stephen Schreibman…I saw him on Monday and I like him very much…this is a much better commute for me it is only 50 minutes..I will have chemo for 3 months and then re-scan to see if the lesion can be removed….praying for that and for everyone else who is struggling with this disease…Where is Willow Grove? I’m 5 minutes from Easton PA and about 20 from Bethlehem PA.
NancyLainy…Thanks so much for thinking of me…you give so much of yourself to this website…it is truly a beautiful thing! God Bless..
NancyRandi
I’m so thrilled at the news of your clean scan and bloodwork….You do give hope to others everytime you post in this section! Lets keep it going for many, many more years! We’re in this together friend…
Nancy
