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Wow, you’ve been through a lot – and in such a short time period.
I know this wretched condition can and will take a toll on John, you and the rest of your loved ones. It’s a journey I wouldn’t wish on anyone.
In my husband’s case, the surgery failed. This was devastating to us b/c we know the only way to “cure” CC is either a liver transplant (my husband was immediately ruled out as a candidate) or bile duct resection – that’s the surgery that failed. I was told the surgery would be very long and that if I didn’t see the surgeon within an hour, everything was going according to plan. 90 minutes after surgery started I left for home to take care of my animals and take a shower , was on the freeway – when my phone rang. I pulled over and it was the hospital calling to tell me to return immediately. I knew that was bad news – when I got there the surgeon was waiting for me with his arms crossed across his chest- and I could tell the news was not good. He said the cancer was too close to the Vena Cava and he couldn’t do a thing so he closed my husband back up – and told me we’d have “one very bad year.” This was July of 2017 – another doctor told us my husband wouldn’t see Christmas let alone the New Year.
We were bitterly disappointed, of course. Those were dark days indeed, my husband was very depressed, said he’d lived a good life and had no regrets. But, he also said he wanted to fight no matter what.
There was a long recovery from the (failed) surgery – the surgeon did remove his gall bladder, I’d say at least six months – he started chemo in September after he’d recovered enough. After that, somehow the cancer started to retreat! The scans started getting better and better – along with the liver numbers and CA 19-9 – husband quit chemo in January of 2017 – and his latest scans two weeks ago (PET/CT, MRI and CT) were marked “improved” with no lymph node involvement. The oncologist told us this past week that the cancer isn’t kicking up – but the stents continue to be a problem (they’re stable at the moment and slated to be switched out at the end of December).
What I did during those bleak days was to try to keep life as normal for us as possible. I told my husband’s family members to call and text as often as possible – this cheered up my husband tremendously – I also massaged his feet and hands every night to help him relax and relieve his anxiety. We also went out to dinner, visited friends (I drove us everywhere) and just got out of the house, even walking our dogs helped. This helped alleviate the dark mood that had descended in our home. I didn’t know what else to do except put one foot in front of the other. I was planning for widowhood, believe me – we discussed what music my husband wanted at his funeral and began the transition for me to take over everything that he did as far as mortgage and bills. It had to be done.
The latest scans from two weeks ago have given us hope for the future – the original almost 12 cm mass is now of “indeterminate size” the oncologist said there still might be “microscopic cancers in there” – we know every day is blessing and things could change quickly (as in your case and in ours – we’ve had several after-midnight trips to the ER).
I wish you the best and for John’s speedy recovery. You must keep hope alive and put on a brave face every minute of every day (hard to do at time, I know, I had a massive, unexpected breakdown – a real crying fit – in front of a houseful of company- I couldn’t help it and everyone understood – had another breakdown in a restaurant, couldn’t be helped! I expect there will be more).
Keep life as normal as possible, try the massage and keep connected with family and friends. This is what helped us.
All the Best to You!
Bon
I am very very sorry for your loss.
I understand exactly what it feels like to have a husband with cholangio. It took a long time for my husband to be diagnosed – he was experiencing symptoms for two full years – mostly pain under his rib cage. The doctors told him it was either pancreatitis or gall stones. It wasn’t until his urine turned dark and he was starting to get jaundiced that an MRI was ordered – and a klatskin tumor was suspected. It was the ERCP that caught it. All 11+ cm. of it.
This was March of 2017. We were told to expect four months by two doctors, a year by another doctor. My husband was fortunate that the cancer hadn’t spread into his liver or anywhere else. Still, we were deeply depressed – or at least I was. My husband put on a brave face and said he had lived a wonderful life. I was near hysterical – we do everything together and have been married for 28 years. Very difficult time for us. Believe it or not, my dogs have been an incredible source of comfort for me – they get me out of the house and out and about, and snore by my side during the day and night – visiting family and friends helped too.
At the moment, the cancer appears to be in remission – one doctor is very pessimistic and reminds us at every visit that my husband is “terminal,” the other doctor is more optimistic – three recent scans show a tumor of “indeterminate size” and no mets anywhere (PET/CT, CT and MRI). The pessimistic doctor said she thought there was still “microscopic cancer” in there and wants him on chemo at all times. The optimistic doctor says no to chemo. We are, as always, hopeful – but still meet with a palliative care doctor every six weeks.
All we can do is carry on as if life is normal, but it will never be the same again.
Please take care of yourself and any children if you have them. It’s really tough and I though I’d be a widow by now, we were told last year husband “wouldn’t see Christmas” let alone the new year. I planned for a future alone – and still think about it. We know every day is a blessing and things could change tomorrow.
Best to you and yours,
Bon
Hello Ryan –
I am sorry you are a part of this group. I hope you find comfort here. The personal stories, IMO, are far more valuable than anything any doctor has ever told us – which has been all over the map. I told my husband your and your wife’s story last night while we were walking our dogs. There are many survivor stories here that have given us – unlike the doctors – great hope.
My husband was diagnosed in March of 2017 with CC – his doctor also thought he had gallstones or pancreatitis after he complained of pain under his rib cage. They told him to “go home and rest” – a scan showed no gallstones. Later, the doctor thought he had pancreatic cancer, but his pancreas was clear. Meanwhile, we were losing valuable time and the insurance nightmare – I don’t even want to get into – delays, approvals (or not) and more delays.
By February of 2017, his urine had turned dark, he was becoming jaundiced and his blood work was abnormal. An MRI caught the biliary tumor – all 12 cm. of it. One lymph node was involved but otherwise he was clear, there were no mets in the liver.
My husband was able to switch insurance at this time and fortunately we have double insurance from my job, I have a much better plan that opened up new doctors and new possibilities. He was ruled out almost instantly as a candidate for a transplant, which, we were told, is the only way to cure this monster. His age was the biggest factor (60). We were disappointed, of course. Surgery was approved – husband was opened up and closed – the surgeon told me the cancer tumor was too close to the vena cava to do the resection. More bitter disappointment. This was in July 2017 and we were told he would be lucky to make Christmas, let alone the New Year – that and chemo doesn’t work well on this type of cancer. Those were some bleak days.
The doctors suggested the Gem/Cis – and husband refused at first, because the chemo doctor told him chemo would only buy him four months – and those would be miserable months. He did finally relent but gave up after a few rounds because of the neuropathy in his hands and feet. He switched to an oral chemo but quit that too – last dose was January, 2018.
A relative – and I started doing a lot of research on supplements, etc. and immediately started my husband taking them. At this point, we had nothing to lose – two doctors gave him four months, the surgeon “one very bad year.”
Fast forward to November 2018 – husband is far past his expiration date (as I jokingly tell him) – he just had three scans – a PET/CT, another CT and an MRI. All three were clear – the mass in his biliary duct can no longer be defined (!!) and all other organs are clear. The pessimistic doctor we see said “there may still be microscopic cancers in there” – but the other doctor we also see said he didn’t think my husband had cancer any longer. Unfortunately, he still has the stents in and really wants to get them out – they’ve become infected at times which means a large dose of antibiotics, oral and IV (given at home with a port).
Anyway, that’s our story. It’s been a difficult journey and we know we’re not out of the woods yet – if we’ll ever be. But right now, everything is stable and we hope it stays that way.
All the best to you, your wife and your family!
Bon
Dear Jonathan.
I am sorry to find you here but this is one of the best places for you to be considering the circumstance.
My 58-year old husband was diagnosed with cholangio in March of 2017. Two doctors told us four months, eight with chemo, which often doesn’t work on this type of cancer; the third doctor told me “one very hard year.” Not too encouraging. Surgery was attempted but failed.
I’ve have many low moments but reading the personal stories here has helped me immensely to deal with this terrible diagnosis. I’ve read many accounts aloud to my husband, others I’ve told him about while walking our dogs. The doctors we’ve dealt with are wrong: there IS hope, there are survivors of this. We’ve searched and found better, more hopeful doctors.
Initially, the klatskin tumor was almost 12 cm, with “satellites” (doctor’s word). Fortunately, there was no spread, one possible lymph node involved but nothing else. We were lucky, very lucky as we found out.
Husband did a couple rounds of gem/cis, hated it and switched to an oral chemo for several weeks. January 1st, he decided he’d had enough – the neuropathy in his hands and feet had become intolerable. By February, the tumor had shrunk to 3.5 cm and wasn’t large enough for proton therapy, which we were all set to do.
So here we are, November of 2018, husband just had a PET/CT scan plus another scan (MRI, I believe) – tumor is now 2.5 cm and areas that lit up along the biliary duct are now cancer free. The questionable lymph nodes are clear. The scan was marked “improved” over the June scan which was marked “improved” over the January scan. Our wonderful doctor at the Disney Cancer Center in Burbank (Dr. Jacobs) told us to do nothing- no chemo, no radiation, no clinical trials. He thinks we may be able to go for a cure – or if not, treat the cholagio as a chronic condition.
We accept that.
We try to keep life as normal as possible, husband retired, we visit family, are fixing up our home and going on a family trip to Hawaii in a few weeks. My husband says he feels great and looks completely normal again. We are making long-term plans going forward.
So, with that said, hang in there. Cholangio doesn’t have to be a death sentence as many people here have attested. Treatment options are better and there is a lot you can do with diet and lifestyle. WE certainly believe the changes we’ve made have contributed to my husband’s prognosis and progress.
Bon
So sorry to hear about your husband Ian. Hopefully he found peace at the end and was surrounded by love (sounds like he was!).
I know how terrible this diagnosis is – my husband was diagnosed with CC in March of 2017 and it’s been an up and down battle ever since, about equal I’d say. He did the Gem/Cis routine – although several doctors told us this doesn’t work well on this type of cancer – he was opened up for a resect, and then closed back up and we were told by the surgeon it couldn’t be done. That was a tough blow to take. He is also not a candidate for a liver transplant.
The Gem/Cis seemed to shink the tumor and it’s been stable ever since – last dose of chemo was the 1st of January, and he says he won’t do it again. Scan show stability, for which we are thankful. Every single day is a blessing. Husband just had another ERCP two weeks ago and the surgeon told me the cancer is either spreading into the liver or his stent was backed up. I sat on pins and needles until the GI doctor came out to speak to me, he said husband did well – I asked if there were anything else I should know (doctor is a complete straight shooter) – and he said “no.” Husband appears to be recovering but is tired. His urine and eyes have cleared up so I take this as a good sign.
We know we are possibly in a losing situation here but there is always hope and each case is completely different from the next – we have double insurance so we have seen a lot of doctors, had a lot of consults and it’s ranged from positive to dismal.
I hope you find peace in all this. I wish you the best.
Bon
Dear Lili-
I was very glad to hear you are using dietary/supplements along with conventional treatments. I read Dr. Blaylock’s Natural Strategies For Cancer Patients right after my husband was diagnosed with inoperable biliary cancer in March of 2017. Dr. Blaylock writes that many physicians are uninterested, if not opposed to diet/supplementary adjuncts to conventional chemo. I told my husband to stop mentioning anything about it because we were met with such hostility. All, except for one, told us “none of that works.”
Two doctors gave him four months, one a “very bad year.”
Only one doctor spoke to us about diet – when he looked at my husband chart, his CA 19-9 number had dropped from 250 all the way down to 55 and he wanted to know how “we got that number so low” – I told him it could be from the diet/supplements/juices, etc. – and he told me he was writing a book about the link between sugar and cancer. He 100% believes that sugar feeds cancers (which Dr. Blaylock’s book explains very well). This is Dr. Chang from Sloan-Kettering in New York.
For a little background, after my husband’s diagnosis, we visited many doctors and health facilities in Southern California – USC, UCLA, Loma Linda, Kaiser and more – we are very very fortunate to have double insurance and relatives who were willing to fund second, third and fourth opinions. Husband was opened up in July of 2017 by a surgeon who believed he could do the resection. It was not to be, and he was closed back up. We were bitterly disappointed, of course.
I stuck with the supplements/diet and juices that I got from Blaylock’s book – husband did two rounds of Gem/Cis last October-November and couldn’t take it any longer. He was switched to an oral chemo and gave that up after a week, this was the first of January.
Fast forward…no chemo since January, we see two doctors regularly, scans every four months – CA-19-9 is 27 and all other numbers are in the normal range – although they’ve risen slightly the past week, we believe because the stents need changing out. Loma Linda had him all set up to do the proton therapy – to the point where the mold was made and ready to go. I got a phone call at work, I was sure to tell me the proton therapy schedule – only for the doctor to tell me the cancer was so small there was nothing to focus the beam on! This is shrinkage from 11cm down to 3cm. This was back at the end of February. You can’t imagine how we celebrated.
As an LOL, for writing pretty much this same comment on a British cancer site, I was banned for promoting dangerous “alternative medicines.” I went back later and a lot of desperate people were asking where I was and wanted to know more about the supplements (curcumin, probiotic, DHA, Maitake Fraction D, Vitamin D3) – and how I made the juices. My posts had been taken down. The moderator told me their dietician said it was OK to have some sugar if you wanted, red meat was OK (NO, it is loaded with cancer-feeding iron).
We’ve passed along this information to two other acquaintances, one with metastatic prostatic cancer, who told me after taking the supplements and making the juices, giving up sugar and red meat, his PSA number fell for the first time in two years (no chemo or other conventional treatments).
We think it’s working.
To Kasia:
I am in Southern California and Dr. Fung came highly recommended from a doctor we had a consultation with from Sloan-Kettering in New York – he’s at City of Hope, I believe.
Unfortunately, neither my insurance, nor my husband’s cover City of Hope.
We were told upon diagnosis that the tumor is inoperable – but both a USC and Kaiser surgeon said it is absolutely operable. USC surgeon tried in July and wasn’t successful – wants the tumor shrunk more before he attempts again but said he’d “like another crack at it” – that surgeon told me that Kaiser wouldn’t operate – but when we switched over to my insurance (Kaiser) the liver surgeon told us she’d absolutely do surgery. So it depends on the doctor and medical system – why medicine is an “art” and not a science.
Fortunately, husband’s tumor hasn’t spread. He’s on his second set of stents, installed over this past weekend.
He’s going to start chemo on Monday and then a round of proton therapy at Loma Linda after two cycles, back on the chemo and hopefully by then the tumor will have shrunk enough for the surgeon to remove it.
Yes, it’s been up and down, up and down – from extreme highs to extreme lows.
Hang in there!
Dear Jeff:
Yours is the first comment I read and you have given me hope for the future. I understood every word of your post as far as medical terms, treatment, etc. because my husband is going through the exact same thing.
Husband was diagnosed in March of 2017.
I read too much on the Internet and the first doctor we went to gave him four months to live (!!!). It is now month 5, he’s doing OK and, according to the latest CAT scan the cancer hasn’t spread. Surgery was unsuccessful – but the surgeon told us that with chemo and proton therapy to shrink the tumor, he’d like another crack at it – so there is hope.
Husband’s insurance was terrible – we had to wait for approvals and then appointments were made three weeks later, even though my husband’s chart was marked URGENT in all caps, just like that. We spent a lot of time waiting around for tests, specialists, surgeons, oncologists, etc. We were constantly told “someone will get back to you in 24 hours” – and then four days later and five phone calls from us and no one had bothered to call. That and the insurance was starting to increasingly deny treatment and dr.’s appointments.
Finally, my husband switched over to my insurance (my employer covers spouses 100%). My insurance is Kaiser and they got right on it – doctors called back immediately (not the office), within a day a team was working on my husband’s case (Thank God). He’s had the best care and I have no complaints. The stents needed to be changed and Kaiser did it that very day (the other insurance we had to wait for an approval and then it was weeks after that).
Chemo starts on Monday, it’s been delayed twice b/c the liver enzyme numbers were too high. The last surgeon only put in one stent, the doctor this weekend said two should have been installed and did that procedure on Saturday. Husband went home the same day after the ERCP.
It’s been a rocky road but reading your post has given me hope for a cancer-free future. We’re hoping the chemo/proton therapy will shrink the tumor and the surgeon will be able to take it out after that.
Are you taking any supplements or following any special diet? We are and I can tell you about that if you’d like – husband thinks it’s the only reason he’s still alive.
Best to you and your family – I also have two children who are grief-stricken and terrified and I’ve had to calm their fears (along with my own).
Hello I am new to this board.
I am a caregiver to my husband who was diagnosed with bile duct cancer in April of 2017 – all I’m reading is true: There are tremendous highs along with the lowest of lows – depending on the day and which doctor we’ve talked to. I’ve felt everything from hope to hopelessness from encouragement to despair down to the darkest loneliness and isolation. I’m in another discussion group that is strictly for carers and that has given me tremendous comfort to know that the emotions I’m feeling are normal for this type of horrible experience.
Surgery was attempted in July but was not successful. That was a devastating blow b/c we thought that would take care of it. Husband is on second set of stents – he seems to be holding his own and according to the latest CAT scan, the cancer has not spread.
Chemo is going to start next week. Husband has lost a lot of weight but is still strong and has energy. He has depression at times but has only lashed out at me once (I know this is normal, those with this will lash out at those closest to them). He is righteously angry and frustrated. And don’t get me started on the insurance issues! Husband finally switched to my insurance which has improved our medical care by 100%.
I did not sign up for this and I want off! But this is my reality. In sickness and in health, right? And I’m here.
I enjoy reading other people’s stories and hearing their experiences, good, bad and ugly. I’ve gone through a lot of them, in fact, husband was hospitalized this past weekend b/c the last surgeon put in one stent instead of two and he needed two. My life has been hospitals and doctors’ appointments, one after the other. Sometimes I want to run away but I must stay calm, strong and positive for my husband, myself and my family.
I’m no good to anyone if I run myself ragged.
Thanks for listening.
Bon
