Carrie, my husband ( was 42 when diagnosised) too had high numbers. I believe his was around 25000.
With treatment his did get as low as 70 but now are back up to 363.
It's scary but hopefully with treatment is numbers will lower.
Sending hugs your way,
Carrie, my husband ( was 42 when diagnosised) too had high numbers. I believe his was around 25000.
Lainy, I wish it was possible to switch his doctor to the other ONC but she's a fill in and she's from India. Very smart lady. Boy do I wish she was her to stay cuz we would diffently switch. She's returns to India in June.:(
That was a very cute story you had. Made me laugh.
Thanks, much needed.
Well got ct results back and it shows everything is stable. But we had to see a temp oc doc because his normal doc was out of town. The temp was great! Liked her better then the normal one. Any way she wants a pet scan done. Just like I have been asking for him to be able to have. But his normal doc always said there wasn't a good enough reason to request one. This temp doc said there is since his tumor markers are on a steady climb. She even so much went and called my husbands doctor while we were setting there and told her that one needed to be done. Sounds like he should be getting his pet scan done at the end of the month. Just waiting on the appointment date now. We were both soo happy that he's able to finally get this done.
She also mentioned that if his pet scan comes back clean maybe he could have a break from chemo or just do maitance chemo which would be 1 xeloda a day. That would be great. Now just the waiting game until everything gets done.
Re: 37 year old male diagnosed with stage 4 CC - welcoming any advice (35 replies, posted in General Discussion)
Jason, sorry u had to find us this way. Everyone here is wonderful. My husband was diagnosed with stage 4 cc in August of 2009. He was a candidate for surgery. He had a recurrence of his cc in June of 2012. He's still fighting. He too was on the same cocktail of chemo as you. It worked really well. He's now on xeloda and gemzar. He leads a normal life, works and his normal activities. Some days he's get tired but he's a fighter.
We have 2 kids also, a little older than yours but our kids I believe is what keeps him fighting.
Be stronger than the cc. Prayers being sent your way for you and your family.
You found a great place to come for support.
Dorien, I too have the same fears and thoughts going through my mine none stop. I deal with a lot of anger, thinking why my husband. This wasn't suppose to happen to us. And trying to deal with all the questions that come from my 2 kids always asking why my dad!
My husband and I have talked about him passing on but when we do its hard for me to believe that it's actually really happening.
All I can say I take everything one day at a time. That's all you can do. I do believe some how some way things will all work out. Even though I have many days I wonder how.
I enjoy every day that I have left with him and thank God for it every day.
Sending prayers and hugs your way,
Update on tumor markers. My husbands CA 19-9 went up again. It is now 353. They also checked another tumor marker called CEA and that's at 10.9. The previous checking on that was normal a few months ago. The doctor now has scheduled a ct scan for Thursday and we will get the results on that on tHe 10th.
Praying everything is fine. It sucks that they make you wait so long for the results on scans . I wish they would just call and give the results over the phone.
Other wise he looks good and said he isn't feeling bad. Which I think is good.
Will update once scan results come in.
My husband see Dr. Welling, who was his liver surgeon back in 2009 and Dr Zablubski for oncologist. Our oncologist here at home keeps in touch with them at the U of M and they talk back in forth. We were just at the U of M last month to make sure the doctor here was doing what she should be and they are. All of it just seems to be one big nightmare. Having 2 kids at home makes me keep it together. I have to for them.
Pam, glad to hear things are going well for Lauren.
We have had a second opinion and it seems they are all pretty well much on the same page as of what direction to take. If the tumor marker is up again on monday then the doctor said she would order a ct scan to see if there is something active. From what I understand if its just caused from the chemo it should bounce up and down. He's isn't doing that. So from there I guess if he needs a ct and it shows anything then it will get switched again, maybe to flofox. Has anyone had much success with this type?
Thank you everyone for being here for support. I have thought about going to the doctor for help with nerves but afraid of getting addicted to pils. So I try to deal with it in my own way. Sometimes it's a lot of crying but I manage.
I haven't written on here in a while so here's he update on my husband. Since December his tumor marker has been on a steady rise. December it was 70 now it's at 339. Not sure what to make of it. His doctor today rechecked it and we have to wait until Monday for results. She's hoping to see a decline if not I guess some tests will have to be done because she's thinking that maybe something is going on then. Other wise he has been doing great. Week on week off with his gemzar and xeloda(which they have him taking 6 morning and night). He's doing amazingly well in tolerating it so far. The oncologist from U of M would like to see 9 morning and night but the doctor here thinks its going to be too much. I'm trying to take things day by day. Sometimes I still find myself in denial with everything then it hits me like a ton of bricks. Just having a hard time excepting this is happening. Well that's it for now.
Ultra sound showed no fluid it belly but they said they seen dilation in one of the biliary ducts. Now Friday he goes in for a ct scan just to check things out. All liver levels and bili levels are still normal. Only bad thing is he gets the ct scan and they make you wait a whole week before he gets results. Can't stand that. So scan on 15 results the 22nd.
Thank you, it's so nice having a place where people know what your going through. I don't know what I would do without the support and advice from everyone on here.
Doctors office just called, no results yet from ultra sound but the Ca19-9 results were in and it went up again. It was 72 then 98 now 145. I don't know what to make of it. Suppose to see the doc Friday. Praying its not bad news.
My husband just had CA19-9 checked again last Friday. He ended up sick with the flu going around so they waited an extra week before checking. So now when he went in Friday the 31st they decided to orderan ultra sound because they thought his belly is looking too extended. I didn't get to go to the appointment with him but they told him they were looking for fluid in the belly or to see if its the cancer spreading. All liver levels are normal but they said they still wanted to see if it spread. I guess it will be a few days before we get any results. So I'm trying not to get myself too worked up and trying not to think the worse but it sure is hard and scared to death.
My husband had a liver resection in 2009 and in 2012 he had scar tissue build up where the surgery had been performed which they called conclusions so his doctors did what they called a ballooning which was performed a few times. It was to stretch it ducts back open and once they were comfortable with how the stretching was going they stuck in stents. But while all this was going on they had a tube in the liver for external drainage because he was turning yellow. It seems to have worked so far. But he also had a reoccurrence of his cancer then too. He's been doing chemo since then. Don't know if any of this helped.
I've known another person who has had similar problem too.
We have seen a few doctor. Even seen one from the U of M and they told us his only option now was chemo. It's so hard to set here and feel helpless. Life's just not fair. Thank you everyone for your thoughts, I appreciate.
Thinking of you. Prayers sent your way
Lainy, my husbands 46. His cancer came back last year in June. The only thing they told us that for him to do chemo to help prolong his life. I don't know how much longer its suppose to prolong it. He asked his onc doc 2 weeks ago how long they thought he would have to be on chemo and they told him he would be on some type for the rest of his life. He expects the to tell him how long he had but they won't. He's not in bad shape and to look at him you really can't tell. It's just he's getting tired of the chemo and even though he's been off the cisplatin he's experiencing a lot of side effects from it. He's always been the type of person that's had to be busy doing something and he's having a hard time adjusting to getting tired from doing not much of anything. Now his tumor marker jumped a little that'd bothering him. The nurse told us not to worry about it because sometimes them markers don't mean anything. His belly is really round but we have been told its nothing and the last ct a month and half ago showed nothing. He's always feeling his stomach. I ask him if its bothering him and he says no. Sometimes I just have a hard time believing this is all happening. Just seems like a bad nightmare.
I'm glad this discussion group is here, it sure helps.
My husband wanted me to ask if anyone has an idea how long a person can be on chemo? He's thinking that eventually his body will get immune to the chemo or take a toll on his body. We were told he would be on some form of chemo for the rest of his life and he's wondering if its worth it. Especially with the side effects. Anyone have any ideas?
Thank you Pam. I'm trying to call the doctors office but I always end up talking to a nurse. Very frustrating sometimes.
My husbands been doing really well. He had a few side affects from the cisplatin, feet tingling and some hear loss. He has been off it for a little over a month now. Just taking gemzar. His CA19-9 even come down to 70 when it was tested 3 weeks ago. Now just last Friday they checked the tumor marker and it jumped to 98 but all the other liver tests were normal. I don't know if its a reason to be worried but I am. I'm afraid that if all liver levels were normal and the tumor marker is starting to go up does it mean that the cancer could be else where? The tumor marker had been on a steady decline so I'm not sure what to make of this. We weren't scheduled to see the doctor for another 3 weeks. I had just called on the results. You would think the doctor would call.
Topic: Drainage tube removal with stents palcement (0 replies, posted in General Discussion)
Well went back to the U of M yesterday for my husband to get his drainage tube out. They went in and placed 2 stents but said they wanted to leave the tube in for 2 more weeks just in case he has any problems for them stirring things up.
They ballooned 3 times prior because of the scar tissue from where he had his resection. They figured they needed to put stents in due to the fact of thats where the cancer is also.
Has anyone had anything like this done and if their stents ever blocked off?
They wanted to get the drainage tube out since he's had the tube in for 6 months and he's developed an infection from it once.
Pam...My husband had Dr. Wellings for his liver surgery back in 2009. He was really good with us. We also seen him a few times this year but once he told us about the lesion on the liver and the swollen lymph nodes this past June he told us there was nothing more he couod do and for my husband to have chemo and said that it could be done closer to home. The U of M is 4 1/2 hours away other wise my husband would have had Dr. Z just like your daughter. He went through chemo in 2009 after his surgery and that was just in case there were cancer cells left behind. The he took Gemzar with the Xeloda pills and he did really well. This time around is kicking his butt and he's only had 2 treatments so far.
The sugar did seem to help some. He was happy for the advice on that.
Today was the worst day so far. He had to take his antinausa pills were the time before when he had chemo he never had to take them.
Days like this his postivity is low. He starts telling me about the what ifs and what I am suppose to do. It's so hard to set there and listen to him tell me things like this but also I know I need to listen. I try to stay postitive for him but it gets hard.
Thank YOu everyone
Marion...Thanks for the help. I'm so happy I have found all of you.
Marion...thanks for the advice. He just woke up again with them. I will suggest this to him.