My Dad is fighting for his life…..
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- This topic has 4 replies, 4 voices, and was last updated 13 years, 11 months ago by kimcirucci.
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January 13, 2011 at 12:12 am #46744kimcirucciSpectator
Hello my father’s daughter. I have had experience with Gemzar/Cisplatin, had innumerous swollen lymph nodes in my chest & abdomen which were considered metastatic (but weren’t), had resection by ex vivo technique (which there is only one dr in NY who performs this, who was my dr) and just had a CT Scan 5 mos out from surgery, which seems to be ok, but I’ll elaborate on that after. So the bottom line is, every case is different and every radiologist who reads a CT Scan, etc. doesn’t always know what they are reading. You can hear more about my story on this site under the intro section listed as “My inspirational story”. As far as Gemzar/Cisplatin are concerned, the regimen didn’t work for me. My cancer at the cellular level actually doubled while I was on that treatment. However, there are many who have had success with it. Once again, everyone is an individual and each person reacts differently to medications. I was told that I was inoperable by many, many well-reknown physicians, but I didn’t listen to any of them. By the hand of God, I found a surgeon in NY who was not afraid to tackle my case & did remove my tumor. I underwent extensive surgery & thought I’d never feel human again, but almost 6 months later, I feel wonderful. My recent CT Scan did show something very tiny in my lung, but the radiologist wasn’t sure if it is infection related, inflammatory or a neoplasm. My oncologist isn’t very concerned. I believe it may be inflammatory since my lungs underwent a lot following surgery, but if it turns out to be a neoplasm, I will certainly make sure the doctors do whatever it takes to get rid of it. My oncologist agrees. All I can say is do your homework and believe in your heart that your father can conquer this. Take everything you’ve read and have been told with a grain of salt. Things aren’t always as bad as they appear. I’m so sorry your family members had to deal with wrong diagnoses. This just proves how unstable the medical profession is. If you have time, please read my story, and if you have any other questions, or just want to talk, please feel free to email me. I would love to hear more about your dad’s case, and hopefully my story will give you all some hope. I had a visit with my new oncologist today and he told his staff that I am the reason to believe in God. I was so moved by his statement. It made me feel like I’ve been chosen to be some type of messenger….Wow, how special is that. After being told by many that there was no hope for me, I guess I can say never lose hope. Miracles happen every day. I’m still here & yes they do. Good luck my friend. Hope to hear from you soon. I will keep you in my prayers.
January 12, 2011 at 11:35 pm #46743myfathersdaughter-2MemberHi, and Thank you
When my Dad was first diagnosed he had only a small liver lesion 5mm that was biopsied and was told he had pancreatic cancer by a cancer center in another state. I was present for the diagnosis there and they said it could be removed because of the pancreatic cancer not being operable. Since then he moved here to be close to family.
Ironically, my mother’s first diagnosis was also pancreatic cancer when in fact it was ppc/ovarian.
In both cases it was UW of Madison hospital that diagnosed correctly.
Both mom and dad where told that no surgery could be done and in both cases, they did indeed have surgery at UW. It gave mom four yrs instead of the two months she was first given.
Unfortunately Dad’s may have been too late, however we’re still working on it.the new cancer lessions have appeared recently and are very small but there are many. Apparently rogue cells had already been released before they were detectable and the same with the new lesion on his lung. He also has two enlarged lymphnodes that are near the liver. Very thorough tests were done days before the surgery. The Dr said she would not do surgery unless she was sure there was no sign of metastisies. So I beleive they did everything possible before surgery.
My Dad and i run a cancer and support group and cannot stress enough the importance for anyone to get a second opinion.
Mom was, and Dad is being treated locally but we go to UW for second opinions anyway and they happily confer with our local doctor.
I have all the faith in the world in our oncology clinic here in town and also cannot say enough good things about UWMadison.I won’t say where the misdiagnosis took place. But in neither case was it in this town where Mom received her treatment and Dad is currently receiving his.
Unfortunately running our support group does not mean I have all the answers i need or for anyone else, but I have read alot of the posts and am finding them very helpful and in many cases even hopeful and I thank everyone involved for that!
January 12, 2011 at 11:04 pm #46742lainySpectatorHello, Myfather’sdaughter and welcome to our wonderful family. It certainly sounds like you have done all the right things. Glad to hear about your researching, as to be forwarned is to be forarmed. I am upset to hear about all the misdiagnosis. Did the new CC appear in the liver after surgery or was it missed, as you stated it was still in his liver. Please know that you have the right to get another opinion. Just gather copies of his tests and etc and take them with you. You have been this route so listen to your gut and if it feels wrong it usually is. Do you mind telling us where dad is being treated? Take some time to read our posts and we have a search button at the top where all you need do is enter a word and posts will come up with information. Stay strong and we wish you the best. Please keep us posted.
January 12, 2011 at 10:34 pm #46741jennifersMemberI really have no advice to give you, I just wanted to say welcome and tell you that I SO admire your strength. Good for you for getting educated and researching – it’s definitely going to be needed for your fight against this cancer! I am sorry you lost your mother, and hope that you win the battle with your Dad… my own Dad was diagnosed almost a year ago, and although the Cisplatin and Gemcitibine have maybe helped slow the cancer down, it has not stopped it from progressing. Everyone reacts so differently to treatment, so saying it didn’t stop or shrink his tumours certainly doesn’t mean it wouldn’t for your Dad…
Thinking of you and your family….
Jen
January 12, 2011 at 9:50 pm #4610myfathersdaughter-2MemberMy father was misdiagnosed with another form of cancer and treated for 18 months. He was told surgery could not be done, when the tumor was still very very small. This past fall he was rediagnosed by a new facilty and had liver ressection. recently we learned that the cancer is still in his liver and now a spot on his lung.
Prognosis is not promising but the dr wants to try Abraxane.
I have read many good things about the Cisplatin and Gemcitibine on this chat board and wondering if as many people are still having goodluck with it and has anyone been in the Abraxane trials.
I lost my mother in april of 09 to ovarian cancer, which initially was misdiagnosed and have learned to do alot of research on my own. It was because of the research and a 2nd opinion that my mother was correctly diagnosed and treated. She survived 4 years before the cancer took her.
I was her primary caregiver and will also be for my Dad.Although I feel I am not ready for this again, I have to say that being Mom’s caregiver was a privilege and I found I had strengths I never knew I had and cherish every minute I spent caring for her. Just wanted to let people out there know for their own peace of mind, a caregiver has their own struggles but never should anyone feel that they are a burden on their caregiver.
Sorry, a little off track but I needed to reassure others that when the time does come, being a caregiver is an honor and privilege.I do know that when my Dad’s time comes I will feel and do the same but right now I want to make sure he is given every opportunity possible to have more time with his family. He is just not ready to give up.
I am hoping there is some promise out there for my Dad. It will be two years in April since we first found out about his cancer. he has been on folfox and tarceva with gemzar. The correct diagnosis was just made in Sept.
Any advice or experience shared will be much appreciated.
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