Topic: Fiance Newly Diagnosed

Hello!  My name is Sonja and my fiance (Jeff) was just diagnosed with CC a few weeks ago.  He first found out that the growth on his liver was Cancer on the 17th of August, the same day he proposed to me.  Since then life has been a whirlwind of doctors and frightening statistics and dismal attitudes around us.  He is 38, doesn't drink or smoke and was in the best physical shape of his entire life before this.  I know cancer doesn't care about all of that, I just hope it will help him have an edge in this fight.
     His CC was caught in stage 2B, is unresectable at this point, and so we are just doing whatever the doctors tell us.
     Jeff started Gemzar two weeks ago this past Thursday and so far his treatments have been ok.  Of course he is fatigued, but for the mostpart has avoided all but one spell of nasea.  He has had a weird hiccup reacton following both treatments, which of course are painful, but otherwise he is tolerating things ok.
     I have been hearing that the goal is just to keep this at bay, and that frightens me.  The term "buying time" is even more scary.  We are just so frightened!  I did get on the phone with the Mayo Clinic in Rochester two days ago and have him set up to see them in two weeks.  The encouraging thing about this appointment is that they have given me hope and said there were "options".  So, that's where we are at right now.  Sorry for rambling, just still am a little numb at this point and glad to have somewhere to vent!
     I look forward to getting to know everyone better!

Re: Fiance Newly Diagnosed

Hi Rhodymn- I am so sorry to hear that your fiance was diagnosed with this illness. I lost my precious Dad this January 13th to this disease, he was 69.  He was also healthy and never really complained- he was diagnosed at Stage 4 and within 10 weeks was gone.

I believe Jeff's age and health are factors in his favour.  I also know that your love and support will help him tremendously.  Jeff G. on this board has been living with this illness for eight years, I believe. So... never lose hope. I believe that as long as a heart beats, there is hope.

I only found this board after my Dad passed away, but I have been on here since, sharing my anguish, trying to offer support to others... this board has helped me tremendously and I am certain you will find many useful resources here. More importantly, you will find support from individuals who truly understand what it is like to travel this path.

My thoughts and prayers go out to the both of you that the doctors may be able to help Jeff in the best possible way.

Bright Blessings,

Missing U

Re: Fiance Newly Diagnosed

Dear Rhodymn, so sorry to hear your man has been dignozed with CC. And what spectacularly bad timing! YOu must both be very upset and very scared, when this should be the time you look forward to the rest of your lives together. So sorry.
As MU says, hopefully his age and fitness will be a defining factor in all this. I hope his treatment continues to go well, and let's hope the Mayo Clinic are able to offer you more.
Much love to you both.

4 (edited by jules Sun, 07 Oct 2007 05:46:52)

Re: Fiance Newly Diagnosed

Rhodymn

So sorry to hear about Jeff. I hope that the Mayo Clinic is able to offer him some treatment options.  I would keep getting surgical opinions if I were you.  There are some surgeons out there who are willing to operate on large 'inoperable' tumors. 

It is difficult to weigh up treatment options - I would just find a Dr you feel you can really trust, who is prepared to think out of the box and has plenty of experience with this disease - go in there with a list of questions, it is such an emotional time it helps to think beforehand about what needs to be asked/clarified.  I used to go into the appointments with my Dad with a list and also research articles that I wanted to discuss with the Drs, I also made it clear that we wanted aggressive treatment and that we were prepared to try more experiemental procedures/treatments.   I think with cc they rely too much on statistical data.  Ask them what they are giving pancreatic cancer or bowel cancer patients now (most of the drugs used on these more 'common' cancers are eventually used to treat cc patients - are they prepared to include cc patients in trials for other gastrointestinal cancers?)

be strong,
Jules

Re: Fiance Newly Diagnosed

Sonja,

Your husband is young, in otherwise good health and you are going to visit Mayo Clinic to find what options are available.  That description fits my wife (who was diagnosed at age 39) and she is still doing well more than five years later.  There is reason for hope despite all the statistics and history of this disease.   

Good luck to you and your husband.

Bill

Re: Fiance Newly Diagnosed

Hello Sonja,
As others have said, your fiance's health and age are great factors in his favor -- the fact that he's stage 2B is also wonderful, as the cancer isn't too far advanced. I feel certain that there is a lot of hope there and the chance for resection would be available with the right surgeon or maybe the right treatment to shrink the tumors first.
Many people on this board have pretty long survival with the right treatment, especially if it's caught early. Don't give up hope - there are lots of options! Keep reading the positive posts and stay away from the negative ones from people like me who have lost a loved one - usually they're stage 4 when diagnosed, so you have a totally different situation!

Much hope,
Joyce

Re: Fiance Newly Diagnosed

Sonja, I have been following this board closely as one of my best friends has been battling cc for 19 months and has tried various types of chemo and has participated in several clinical trials at M.D. Anderson (see Martin blog).  Please view the video at www.curedoflivercancer.com as an option.  I saw this a week ago, told her family about it and they emailed Dr. Canady.  He called them the following day and asked for her records.  Once he received them, he called again and said he would like to see her next week to run a 3D MRI to see if she is a candidate for his surgery.  We are all so excited and praying that this is the answer for her.  I would encourage anyone with cc to do the same.  I have been studying and researching ever since she was diagnosed, and this is the most exciting thing I've seen.

Re: Fiance Newly Diagnosed

Hi Kap,

I just had a look at the video. It gives so much hope. However, which hospital is Dr Canady attached to? Is he working independently? I wonder whether we should contact him too to send him my dad's info. I was also wondering, was your best friend in a clinical trial with the Anderson clinic with Herceptin? This is something they might offer my dad as he is being treated by the Anderson in Madrid. I hope all the best for your best friend and wish you all the best of luck. We send as many positive vibes from here (London in the UK and Madrid in Spain) as we can.

Katia

9 (edited by Sara Sun, 07 Oct 2007 18:10:55)

Re: Fiance Newly Diagnosed

Hi, Sonja.  I'm sad to hear that your fiance has been diagnosed with cholangiocarcinoma.  I'm glad you found this community, but I sure wish you didn't have a reason to be looking for us.  You guys are definitely included in my thoughts and prayers.  If you are going to the Mayo Clinic, I highly recommend you see Dr. Steve Alberts.  He's an oncologist who is very focused on cholangiocarcinoma, highly regarded among his peers, and he's extremely kind.  He's definitely someone you'd want on your team from Mayo. 

Katia,

I'm butting in a bit on your question.  It appears that Dr. Canady is with the Institute for Advanced Biological Technical Sciences in Hampton, Virginia, USA.  He also has a company dedicated to selling his argon plasma coagulation device - Canady Technologies.  I assume he must have privileges at some hospital(s) if he is performing surgeries with this device, although it is not immediately clear.  I'm guessing it's somewhere in Virginia.  I am a bit skeptical, mostly because everything I'm reading on the net and medical publications seem to be focused on marketing his patented device, and I have yet to see news flashes on the cancer sites linking the 3D-imaging & argon device to increased survivorship with liver cancers.  I hope I'm just being paraoid.

Edited message to include the link to Dr. Canady on the Monongahela Valley Hospital in Pennsylvania, USA.  http://www.monvalleyhospital.com/findph … sp?alpha=c

30-something caregiver

Re: Fiance Newly Diagnosed

Sonja, I don't recognize the name Herceptin, but I don't know all the drugs she has tried.  I know that she has taken Sorafenib, 5FU, Gemzar and several others.  You can check them out on her blog.  She's pretty much been on some type of chemo since she was diagnosed.  Her problem is that she has allergic reactions to almost all of them.   Chemo may have prolonged her life, but the quality has certainly suffered.

Sara, in response to your comments about Dr. Canady, he is in  the Pittsburgh area at Monongohela Valley Hospital.  I'd like to think of his approach as visionary, and at this point, my friend is about out of options.  We'll know next week if he is the answer, but she's tried almost every chemo there is for this type of cancer over the past 20 months and is getting weaker by the day.   He may be financially motivated by his invention, but who wouldn't be proud of something they invented that might save lives?  I just hope he's the answer!  There's also a thread discussing Dr. Canady on cancercompass.com. 

Good luck to all who are battling this horrendous cancer.  It has been an emotional roller coaster the past 20 months, and this is just a good friend I'm watching suffer with it.  May God bless all of you whose loved ones are affected - I hope a cure is right around the corner.

Re: Fiance Newly Diagnosed

kap - I apologize if I come across as a downer.  I genuinely hope that Dr. Canady can offer a viable option for all cholangio patients - especially your friend.   At the same time, I do think it's responsible to note to the community on this site that Dr. Canady's only publication on Pub Med pertains to his patented device (published in 2006), and there haven't been any late-breaking notices from the cancer institutions regarding the combination of 3-D imaging and resection with the argon "knife."  Again, I hope that I'm being unnecessarily paranoid.   I'd love nothing more than for Dr. Canady to be able to offer the surgical cure that eludes so many cholangiocarcinoma patients.

30-something caregiver

Re: Fiance Newly Diagnosed

Certainly no offense taken, Sara.  I know we're all trying our best to help all cc patients, and it's completely natural to question something that's out of the ordinary like this.  I'll update late next week after she sees Dr. Canady and let you know what they found out.

Re: Fiance Newly Diagnosed

Well, my friend saw Dr. Canady, and she is not a candidate for his surgery.  She has too many tumors in her liver, and there's not enough healthy liver to work with.  It's probably going to be more of an option for someone who is newly diagnosed - she has been fighting this for 20 months and it has progressed too much.  Not the news we hoped we'd hear so it's back to the drawing board to look for more options.  Good luck to you and your fiance, Sonja.

Re: Fiance Newly Diagnosed

Hi Kap and Sara,

Well it turns out we too have contacted Dr Canady regarding my dad and he has told us that he wants to see him. We have booked our tickets for this Saturday all the way from Spain to see him on Monday. My dad is quite tired and on antibiotics so it will be a difficult trip for him but we feel that we need a second opinion (following JeffG

Re: Fiance Newly Diagnosed

Hi, Katia.  I am sorry to hear of the bad experience in Spain.  It's really a rough road, and I hate to hear that it's further complicated by people who are supposed to be part of your team.

Regarding Dr. Canady, I have guarded optimism at this point.  I really hope that Dr. Canady can provide a surgical answer.  At the same time, I am nervous that the news piece featured on the curedoflivercancer.com website may create false hope for many on these boards.  We've seen numerous times that some surgeons are willing to operate, only to have the cancer recur in a few months.  We also do not have any follow-up information regarding the patient featured in the news  story on that website.  Therefore, the news piece presented many conclusions that may or may not be the case, so I do remain guarded.

Looking at Dr. Canady's listed credentials on the hospital website, he is listed as a "general surgeon."  The surgery involved with resection is really radical surgery.  Therefore, I would personally want someone highly specialized in liver surgery, and certainly someone who has seen many cases of cholangiocarcinoma in his career.  But that is my personal preference, and it certainly does not make it right.  Only your dad knows what is right in his case.

If your dad is truly up to a trans-Atlantic flight, and the jet-lag that comes with the flight, then I would try and schedule a third opinion as well.  Ideally I would go to Sloan Kettering in New York.  However, if that is too much of a trip, I would go to one of the cancer centers in Pennsylvania:

Abramson Cancer Center
Fox Chase Cancer Center
University of Pittsburgh Cancer Institute

All my thoughts and prayers are with you and your dad.  Godspeed to you both on your journey.  Please keep us updated.

Hugs,

Sara

30-something caregiver

Re: Fiance Newly Diagnosed

Hi Katia,

My friend was not a candidate for Dr. Canady's surgery, but they were very impressed with him and his kindness to them.  He talked to them for 2 hours and explained many things that had not been explained to them before.  I think the problem is that people wait until it's too late to seek him out, and when the liver is totally involved, there is nothing left to work with.  If the patient can see him before the cc has spread through the liver so much, there is a better opportunity for the surgery.  My friend has been battlihg cc for 21 months, and he told her that chemo is what has kept her alive this long.  She will continue with chemo as long as she can - she is a fighter.  Good luck to you and your dad, whichever path you choose to take.  There are many out there, and you just have to find what works for him.  My prayers are with you as they are with all cc patients and their families and caregivers.

Kap

Re: Fiance Newly Diagnosed

hi rhodymn, so sorry to hear bout ur partner, glad u found this site has it helped me imensely, even tho i didnt have much time to post while i was on here the people here are fantastic and are like part of a big family. its fantastic theyv'e caught this beast at an early stage gives u both much better hope, i lost my mum in april she was stage 4 wen diagnosed and lasted 8 wks at the age of 52, i really hope u get the advice and treatment he needs , my prayers and thoughts are with u god bless u.

Re: Fiance Newly Diagnosed

Katia,

Please trust your instinct . You flew from Spain to get help for your father it is not in the form of Dr Canady . Please since you are in pa go to UPMC . A world renowned cancer center. Do you not find it funny that he is not with them he is not because they do not want him. Go to the Hillman cancer center get anothe opinion . He will kill your father in the long run . I speak from the heart and first hand Jerome Canady is not going to help you . I am sure he has given you the sales pitch and charmed you with all his care he cares about himself . Ask him what your Dad will b elike post op . Ask him how many people he has had die . Ask him why he is not wanted  at the hospital he is at ask him why they want to get rid of him ask him.  Why if he is so great is he limite dto one small hospital . Please let your father live the rest of his days with his family that live him . Not in a bed . Do not be conned by this man  I saw you on the news today so much hope you have in a man . I know you are looking for a life line and he will throw you one -but at what cost . Go back to Spain or go to UPMC do not go to Canady