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Hello everybody,haven’t posted here in a long time since I started advocating for the mother of our two kids (my ex-wife) was dx 2 1/2 years ago. gemzar/ cisplatin/tarceva for last 2 years. I discontinued advocacy for her after 6 mo due to the fact she was finally getting treatment after being denied and dropped by her insurance company, also my very time consuming advocacy was putting a strain on my current marriage ! I actually separated from my current wife for a year, but won her heart back ! Lost 2 , won 2.
Then 2 months after life was good again, my current wife was dx with lung carcinoid (neuroendocrine cancer). She has mets to: lymph’s, mediastinal, thyroid, pancreas, liver, pelvis, leg and arm bones, skull and most all the vertebrata in her spine! http://www.anncan.net
I am now also back to advocating for my ex-wife as well. http://wepay.com/godonnago
She (ex) has been doing great, her ca-19 is 30-40. Pets look good, no mets of note…..however she has been battling infections for months now and is in the hospital while they scratch their heads trying to figure it out….
I’m thinking cholangitis and replace the stent that’s over 2 years old ? Suggestions welcomed ?
And I have just have to say a big thank you to all of you for being here and helping . You make a difference, and today there are hundreds if not thousands who are alive because you took the time to care and share your knowledge and your compassion. For me personally, it gave me the tools to be an advocate and caregiver to two of the most wonderful women I have known. Their alive today because of all of you. And I (think) I have become a better person for it. Thank You! And God bless you. Gary
My ex-wife and our children’s mother was diagnosed almost 2 years ago….prognosis:” Go home be with your loved ones”.
That was it, no cure or treatment, nothing. Her insurance turned her down for surgery to resect. That was it for me I got busy and found this truly amazing resource. A whole forum full of people wanting to help, people who should be dead. What was their secret?
I don’t know for sure but I came across “Andi’s list” and that started my own research, a lot of it on Sloane Kettering’s botanicals and herbal pages, and PubMEd. One day a light bulb went off, and this male chauvanist, skeptical 50 year old did a 180 degree about face….I’m not religious but doesn’t the bible say God gave us all we need, around us? didn’t Hippocrates say “let food be thy medicine and let medicine be thy food”.
You see what you come to realize is this, Chemo and radiation aren’t cures, sure they can shrink and even sometimes kill tumors, along with your immune system and healthy cells.
The best thing to do is stop putting crap in your body and boost your immune system. Empty out your pantry and fridge, eat fresh, nothing pre-packaged. Cancer is primarily a modern/western/civilized/culture, disease.
I’m no Guru or do-gooder. But bless the people here who showed me and many others the way.
My Ex- wife did get chemo: gemzar+ cisplatin+that ” A” pill.
Her Oncon is scratching his head. Her numbers are down to nothing, same with pet scan……no adverse side effects….Hmmmm?
Coriolus Versicolor….Turkey Tail….the “magic mushroom” ? You decide.
That along with many other supplements (based on Andis list) I believe is the reason she’s still here and healthy. Oh and yes Now I do believe in miracles, and Andi.
Here’s a link: http://www.mskcc.org/cancer-care/herb/coriolus-versicolor
The best supplier I found are these guys: http://www.jhsnp.com
Good luck, stay focused, stay positive and research………..Gary:
Good morning Tom, I have read many of your posts and like your approach and tenacity in dealing with this disease (and thanks to all your responses to my posts).
I have looked at the LEF website and will give them a call, sorry to hear about your bad experiance with the “magic” mushrooms like me you probably had high hopes for a good result.
My wife has been complaining lately of a non specific back pain below her right shoulder blade ? Wondering if this could be from the cancer going into her Liver?
She is going in to have a port installed this morning.
Supposed to start IMRT/Grt radiation on Thursday, which is the same day that we go back to the Oncologist to go over the results from her petscan last week and then I believe she starts On Gemzar/Cisplatin next week.
I still have mixed feelings about the whole chemo/radiation thing, I have tried to do my best to inform her about everything out there.
She still, even after 3 months (wow! That long all ready?) has not looked at this or any other websites…..prefers me to do all that stuff, which is fine but I hate to feel like I’m micro managing her life especially since she is my ex wife, hard to juggle that situation in regard to my marriage now, she was supportive at first but says she feels neglected, understandable given the time I’ve devoted to helping out my Kid’s Mom. I will have to do something to make her feel special ! But I have to do what I do, as Donna (my ex) has no one else.
Didn’t plan on being her caregiver, didn’t even know that term untill a month or so ago.
This site has been a godsend to me, found it early on but didn’t realize that there was a forum like this until a month ago.
Sorry to go off topic and rant like this, I guess sometimes we all need to let our feelings out sometimes.
I won’t lie, its been the toughest time of my life, I never knew I could cry so much, just comes over me in waves, I can’t imagine my kids without a Mom. this lady is so dear to me and loved by many, definitaly a very good woman,
even my wife now, Ann has all ways been on good terms with her, even shopping occasionally together.
So I will carry on and do what I have and continue to educate myself and inform her of all options and try not to preach (hard not to, when we know what we do).
At the end of the day its her life and her body, Have to respect that. One thing that I have learned on this website is that there is NO standard of treatment, every body must make there own decisions on the treatment that’s right for them.
I recently printed out and gave her a copy of the Desiderata to put on her fridge, Think it helped me as much as her !
Here’s a link to a good printable image: (url)http://inverhousemanor.ca/Invernews/Desiderata-1.JPG
Much thanks to all of you, all ways appreciate your advise to me and others too Marion.
Hope you all have a blessed day !……. Gary
Thank you all for your response’s, well this week she is going to in to see the oncologist and radiologist in preparation for Gemzar/Cisplatin and IMRT to start in about a week (I think!) . My question now is this: She is taking a supplement regime similar to Andie’s (and many of you).
So now, I am wondering which of the supplements she should take (and dosage) and which are bad ?
I know there is not a lot of agreement amongst Doctors and the scientific /research community out there…….I have seen many conflicting reports,…….. ie: Selinium, Milk Thistle, Vitamin D/C/E and others…..Which supplements help with side effects from Chemo/Radiation ? Which ones Help/Negate the the effects ?
So what are you thoughts and experience’s with this? Thanks Gary.
Kentucky Jack, Thank you! I remember in the past seeing many stories about Suzanne Sommers battles with cancer, I am definitely going to get that book. Nutrition is one of my other concerns right now, not just the fact that she has to adjust to a low fat diet (she’s a stubborn woman) but I truly believe that diet is a key element of health and it is a fact that many foods have proven curative effects, I have also been reading some posts on this site to that effect. The surgery she had was done by a well known Doctor who USED to be the head of UCI’s Liver transplant program, and now has a hepto/bilary practice. sounds good but when I read what happened at UCI I realized that this guy had some issues from his past, but she was desperate to finally get the surgery, and when I met him (post op) I got the impression that he was a beaten man, I know he is capable of brilliance,I read all I could find on him, just don’t know that he has the will anymore to use his god given gift. May be I am thinking to much on all that, just wrestling with why? It’s probably likely that he was right and he did all he could. But after looking at all the alternatives I know that some of the top research and Doctors in this field are just a short 45 min drive from here down at Moore cancer center at UCSD. I have sent her files and talked to them and they would like her to come in for a consultation, I will have to pay out of pocket as the not good insurance she has will not cover outside of our county, but I think its critical to get more opinions, I have been told that their surgeon thinks outside of the box. While its likely that further surgery might not be possible right now, we have to find out her options, like most here chemo is a big hope to manage the tumor’s with hopes of more time….Its a long road Jack but every day offers new hope and an appreciation of the gift of life.
Andy, congratulations! That is fantastic ! Your story gives hope to us all. Thank you. I am going to print this out and show it too my Wife who’s tumor (Klatskins) sounds similar to yours. Gary
Thank you all for your replies,
Kate I am not sure about the staging, or even the type of tumor as we have had little info from the doctor I have only talked to one in the last 2 months, and that was after the surgery for about 3 minutes !!
But from ALL the medical reports I have in my possession I think it is considered a Klatskins tumor, it is I believe from the Gall Bladder and cyst duct back up to the hilum at the porta hepatis, and I believe at least one lymph node and the portal vein are also involved, The surgeon said that the Gall Bladder was all but gone, shrunk to the size of a grape and that the tumor had spread beyond the bile duct to the outside of the wall and that there was some involvement of the blood supply, I asked why he didn’t take out all or what he could and his reply was “Why, it wouldn’t have changed anything”. Looking at the Pathology report from after surgery, they did a liver biopsy and the fatty tissue was positive for carcinoma and the “spots” on the liver are benign Quote “Benign Liver and Metastatic Carcinoma of Fat”. I have started looking at the reports on resection of Klatskins tumors and the USC has a good article on it. Basicaly it depends on the involvement of the portal vein and hepatic artery and which side , obviously I am not a doctor so will have to wait to see the Oncologist on Wed (who has limited CCA experiance) and hopefully get more imaging tests done. Appreciate any and all advice on (A) good Oncologist in Orange County California, ( What are the best tests for imaging at this point, PET scan or? What chemo does most insurance cover (especially local county, indigent insurance) (C) Does the type of surgery she had Roux en Y (not done laproscopicaly) have an impact on the cancer growth ?
I will keep searching here and elsewhere for the answers. It feels like, as bad as its been the fight has just begun. It’s comforting to know your not alone , Thanks, Gary
Also Andrea I have many fond memories of Dudley Zoo and Castle. Good luck with your Dad, Some people in this country might think National Health is a bad idea, ( I don’t, I have good insurance here) I would give my left arm to have Donna be there and be eligable. My Aunt who lives in Litchfield has been battling cancer for 2 years and speaks very highly of the healthcare she is receiving. I was there last year and went through Dudley,still miss England. Gaz
Thank you, Lainy and Andrea, wow that was quick, you have both lifted my spirits on this Sunday morning, I awoke early (again) and may be this was a good thing this time as I am at a point where the support this site offers is much needed. I will keep you all up to date on Donna’s progress and look forward to a better informed “round 2”. Thanks again and Andrea I am also a Brit, been here a long time, but still go back a lot I’m originally a “Brum” but most of my family is down Bournemouth way. I hope the NHS is doing OK by you. Gary