Hello from a frustrated wife
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Diana,
I’m very sorry to hear the news. What chemo did they suggest? I had Gem/Cis and it dropped my blood counts, but I felt pretty good on it.
Best wishes and keep us posted,
Susie
Diana:
4 years ago I felt much the same as you! I was my husband’s caregiver during his almost 4 year battle with CC. I too had never heard of that type of cancer. We do not know where it came from, all we knew was ‘not much’ at all. I did tons of reseach and before I let any doctor do a resection I found a good doctor that we trusted. He had two drains after surgery for almost 8 months. Then he had a good 18 months, started turning yellow, and was given 6 months or less. He lived another 2 years, will lots of good intervention by his oncologist. My husband passed away almost 4 months ago, he was 64.
As the caregiver, I can tell you that YOU have to take care of YOURSELF as well. Take time out of your day for yourself. Even if it’s only 20 min. a day. You earned it, you deserve it.
My thoughts and prayers are with you both.
Hugs,
MargaretDiana…..My heart is with you. I hear you and so do the many others others in similar situations. Unfortunately, for this disease we do not have any early detection methods in place – neither are scans able to pick up the minute spread of lesions (less than 1 cm.) Therefore, as it happened in your husband’s case, the true extend of the disease can only be determined during open surgery.
Please, know that abandoned surgery happens frequently due to the very same reasons you are describing.
The good news is that your husband is young and that life predictions are estimated on statistics from years prior.
Once the shock wears off and your husband and you have time to digest the information given, you will come up with a game plan.
I am sure for others to chime in and share their thoughts with you also. Stay with us, lean on us, and know that we are in this together.
Hugs and love,
MarionSo very sorry to hear the result, but don’t give up hope. Need to get with an oncologist to start the chemo routine to start shrinking those tumors. So far, I’m tolerating the Gemzar/Cisplatin chemo well and since your husband is close to my age I’d hope that he will have similar results. Wishing you the best with prayers coming your way….
Dearest Diana, I am so very, very sorry about this update. The only thing I can suggest is asking the ONC, “how much time COULD the Palliative chemo buy”. We were told a month past the 6 month prognosis and that is when Teddy decided after 3 days of pondering that he rather have quality time rather than the exrta month. In Teddy’s case the Docs were spot on. It is a very hard decision to make. Teddy was 78 at the time. I know very well how you are feeling and wish I could do something for you. The best I can tell you do to is to be strong and love like you have never loved before. Strength and love will get you through. You never know how strong you are until “strong” is the only choice you have!
Update time. Wish I had better news.
The resection didn’t happen as hoped. The surgeon got him opened up and discovered a bunch of smaller tumors that weren’t visible on the scans. It’s Stage 4, spread to the outside of his liver, his diaphragm and colon and lymph nodes. So the doctor removed a few lymph nodes that were obviously hit and closed him up.
Now the only option left is palliative chemo. He’s back home, and once he’s back on his feet they’ll start that, with the hope of buying him some more time. But at this point, he’s not curable.
We don’t know how much time he’s got. Untreated, he might last 3-6 months. With chemo, it’s up in the air, depending on how he responds. The numbers they gave were averages, though the majority of patients in his condition were considerably older, so his age is in his favor.
I am still utterly in shock.I agree with Jim, can’t worry about what you don’t know. I just thought to mention what actually happened to me since it sounded like the surgery your husband was having is going to be so similar to mine. Wish you guys tons of luck and prayers!
Diana, you should know Derin’s experience, at least amongst the resection patients I have talked to, is unusual. While some infections are not too rare, going home with a bunch of drains with the ensuing complications is. I think my own experience is much more typical of resection patients. You can’t worry too much about what you don’t know, and in any case, you’ll probably worry about the wrong things anyway. Have faith your doctors know what they’re doing and just roll with it.
Good luck again.
Thanks everyone.
Derin, that’s some ugly stuff you went through, but thank god you got through it. While we’re trying not to scare ourselves unnecessarily, I’m glad you shared it. Your situation sounds similar so it’ll help to know what warning signs to look for.Jim,
So far, I don’t have hernia’s, and considering I’m back at the gym moving close to the weight I did before the surgery (225 on incline bench for 4-6 reps, 225 flat bench 6-8 reps, shoulder press on heavy set was 185 for 4-6 reps), I don’t think I’ll end up with one. Sit ups are still slightly uncomfortable with my 14″ scar, so I don’t do them. But every exercise sort of forces the abs to tighten up. Triceps with the cable machine pressing down is the one exercise where I can’t go heavy because it messes with my abs.Amen to the surgery option, if you can do it, go there, it’s the best option to get rid of everything in one fell swoop!
Eli,
I didn’t necessarily have an ‘infection’, I wasn’t put on antibiotics or anything, they just had to kind of lance the thing. They had a Q-tip with a 6″ or so wooden part and the freakin’ doc started poking and prodding and broke through the thin healed skin and I was thinking “what the heck is this guy doing”. All of a sudden, there was only about an inch of the wooden part showing, the other 5 inches he shoved into me and I was really freaked out a bit. The fluid buildup was released and the pain stopped, so I dealt with it. The packing of the thing afterwards wasn’t the greatest, but it did heal. I’m hoping that the indentation will eventually go away. I think I’ve put on too much weight and may need to lose a few pounds but with the chemo I was worried I’d have bad side effects and lose weight so I put on what I could… I guess I shouldn’t have added so many pounds!!Diana,
The important thing is your husband gets to do the surgery! That’s the best situation hands down. We wish your family the best and hope for a great surgical outcome!!!Diana:
Best of luck with the surgery!
Jim:
My wife’s incision got infected too. Radiation and medical oncologists had the same firm stance: chemo radiation is a NO-GO until the incision is fully healed. The surgery was on July 4th. Chemo radiation started on Sept 12th. More than two months delay thanks to the wound infection.
Derin, your surgery was a real mess compared to mine. I had no drains, just got infections in three spots in the incision wounds. The chemo got in the way of healing and I ended up going to a wound care practice for about 14 months. I ended up with three really big hernias, which I’m not considering getting fixed. In spite of any post surgery problems, surgery is a great thing, if you qualify.
Diana, good luck and I’m expecting you to have a good outcome.
Great news! As your husband is apparently having a procedure very similiar to mine and we’re close to the same age (I’m 40, 41 in April), I can tell you that I was in the hospital for 9 days post surgery. I had 3 complications afterwards as follows:
1) The drain that was placed during the main surgery was removed prior to my leaking bile resolved itself (600ml a day initially in the hospital, first day at home about 300ml a day, when they pulled it out I was still making about 130ml a day of bile), so therefore I had an abscess form and they had to add a new drain that was in for about 3-4 weeks.
2) The incision from the surgery at one spot formed a slight abscess right below the surface that resulted in a trip to the ER where they poked it and released the buildup of fluid that was causing the pain. This resulted in the at home nurse ‘packing’ the abscess with gauze every day for 2 weeks until it was healed up all the way. My scar is ‘indented’ at this point and the only uncomfortable part of the scar that I have right now.
3) My drain mentioned in #1 above stopped producing bile so they ASSUMED that the bile leakage was done and pulled the drain out so I could go home a week later. For any drain that is present, DO NOT let them remove it without getting a CT or nuclear study done. It turns out the drain was blocked and I was still producing bile but no one knew it. I went home to Florida on 11/1 and 11/2 was admitted to Sarasota Memorial with a 5″ abscess of fluid that required another drain right in the middle of my chest that stayed for 7-8 weeks until it finally stopped on its own. Another hospital stay for 5 days. I couldn’t start chemo until the drain was out as I was on antibiotics for the whole time the drain was in…
I hope this info helps you with your upcoming surgery. I certainly wish I found this website prior to mine, but I didn’t know it was cholangiocarcinoma until after the surgery anyway! Wish your husband the best of luck. Make sure you get your prescriptions for yourself before the surgery date, it will help!
Hi Diana,
Thats great to hear that your husband will be getting the surgery and of course I will keep my fingers crossed and hope for a succesful out come to it. Please stay positive and remember that we are all here for you.And please let us know how it goes.
Best wishes to you and your husband,
Gavin
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